lupus

Leave a comment Posted on December 12, 2013February 28, 2014 Patient Talk

Vasculitis – inflammation of the blood vessels. How it can affect you and your loved ones. Help us raise awareness of Vasculitis.

Vasculitis

In my previous life as a healthcare researcher I had the dubious honour to be introduced to a set of conditions called Vasculitis.

At the time we were doing work with people who had various rheumatic disorders such as rheumatoid arthritis and systemic lupus erythematosus. Vasculitis, it seemed, was in some cases one of the symptoms of those conditions.

So for some time I have thought it would be of use to run an informational blog on the subject of Vasculitis. It is rare – around 15,000 people in the US are diagnosed each year.

So what are the main symptoms of Vasculitis?

1) A combination of fever and weight loss seems to be the main symptom.

2) Purpura – or purple discolorations of the skin.

3) Myalgia or muscle pain.

4) Heart attacks.

5) High blood pressure.

6) Sight loss.

7) Nose bleeds and bloody coughs.

As we said there are a number of different conditions making up Vasculitis. These include Polymyalgia rheumatica, Takayasu’s arteritis, Temporal arteritis, Buerger’s disease, Cutaneous vasculitis, Kawasaki disease, Polyarteritis nodosa, Behçet’s syndrome, Churg–Strauss syndrome, Cutaneous vasculitis, Henoch–Schönlein purpura, Microscopic polyangitis, Wegener’s granulomatosis, and Golfer’s vasculitis.

Getting good and straight forward information on Vasculitis is not as easy as one would hope. Many of the web sites dealing with the condition seem to be aimed at healthcare professionals rather than people who suffer from the condition. So we thought it would be useful to open up the comments box to people with Vasculitis to share more about their experiences.

You might wish to consider the following questions when framing your comments:-

a) When were you diagnosed with Vasculitis and what type of Vasculitis do you suffer from?

b) What are your main symptoms?

c) What caused you Vasculitis?

d) How have you been treated and to what extent has the treatment been successful?

e) How has Vasculitis impacted upon your lifestyle?

f) What one piece of advice would you give to somebody who has just been diagnosed with Vasculitis?

If you have any links you wish to share that would be great as well.

Please use the comment box below to share any thoughts with our readers.

Many thanks in advance

26 Comments Posted on December 6, 2013November 29, 2017 autoimmune conditions

Sjogren’s Syndrome – what are the early signs and symptoms of Sjogren’s Syndrome? Share your Sjogren’s Syndrome story!

Welcome to the latest in our series of informational blog posts which look at different medical conditions

Today I’d like to focus on a condition called Sjogren’s syndrome.I first came across it a number of years ago when it was widely reported that Venus Williams, the Wimbledon winning tennis player, suffered from the condition.

So what actually is Sjogren’s syndrome? It is an autoimmune condition whereby the body’s immune system attacks those glands which can produce fluids. Examples of this include the saliva and tear glands.

It is worth noting that doctors see two types of Sjogren’s syndrome. Primary Sjogren’s syndrome when it is a “stand alone“ condition. And secondary Sjogren’s syndrome where it is combined with another autoimmune condition such as Lupus.

The condition is very common – with around 3% of us suffering from Sjogren’s syndrome. Interestingly 90% of people with Sjogren’s syndrome are women.

The main symptoms of Sjogren’s syndrome are:-

a) Brain fog – and general cognitive issues.

b) Sinusitis and nose bleeds.

c) Dry mouth.

d) Tooth decay.

e) Difficulty chewing and swallowing.

f) Nerve pain especially in the limbs.

g) Dry eye. Eye infections are also common.

h) Vaginal dryness in women.

i) Gastrointestinal problems.

j) Bronchitis and pneumonia.

It you are in any way concerned about these symptoms and how they apply to you, it is vital you see your Doctor as soon as possible.

We are also very interested to hear from people who have suffered from Sjogren’s syndrome. It would be great if you could use the comments box below to share a bit more about your Sjogren’s syndrome journey. It might be useful for you to consider the following questions-

1) How long ago were you diagnosed with Sjogren’s syndrome?

2) What were your original symptoms?

3) How difficult was it to get a diagnosis of Sjogren’s syndrome? What tests were used?

4) What treatments have you received for Sjogren’s syndrome? How effective were these treatments?

5) What one piece of advice would you give to somebody who has just been diagnosed with Sjogren’s syndrome?

mommyknolls	My symptoms first started off as excessive dry mouth, eyes and arthritis. My PCP did blood work which confirmed his suspicions initially of it being Sjorgren’s Syndrome.
GenevieveGaea	MelanieLongManera That is soooooo weird. I totally forgot about that but I was supposed to get contacts when I was 13 and in the 8th grade. I wore them less than a week before they turned yellow, cracked, and were useless. Eye doctor said my eyes were simply too dry to wear contacts ever but never mentioned Sjogren’s syndrome. He just said it was very odd for a 13 yo to have such incredibly dry eyes. So jeez– maybe I don’t even know when it started. Maybe it’s just how I’ve always been until it reached such a debilitating level even the doctors couldn’t deny it. How crazy is that?
MelanieLongManera	I have never been diagnosed but have all the symptoms (since I was 19 years old; I’m 50 now). I have APS (antiphospholipid antibody syndrome). I would guess my Sjogrens is secondary to that. It started out with me not being able to wear contacts due to dry eyes. I was diagnosed with APS in 1992 after 3 miscarriages. I definitely have the brain fog, the dry eyes, and dry mouth. Just wish I could wear contacts.
GenevieveGaea	In answer to your questions for people who have Sjogren’s Syndrome. 1) I was diagnosed in 2012 approximately 4 years ago. Sjogren’s syndrome is primary. 2) Fatigue, Dry eyes, Dry mouth, Brain Fog, Sinusitis & nose bleeds, All of my teeth extracted but still unable to wear dentures due to Dry mouth, trouble swallowing, chronic and frequent unexplained nerve pain, digestive troubles, skin rashes. 3) Fairly difficult. I’d been tested repeatedly since symptoms became more pronounced and extreme in 2001. It took more than a decade. And I’m quite sure I was ill for many years before that. I had many of these symptoms as early as 1990. They were milder and came and went in those days. 4) I’ve taken the recommended prescriptions but I had no luck with them. I took them in spite of the severe side effects for 3.5 years because the doctors told me it takes a very long time to see progress. Then I stopped taking them and I can say with authority that the medications did not increase my symptoms but refusing to take them did finally end the horrible side effects. Until they come up with better options, I will not be taking any more prescriptions for Sjogrens syndrome. It’s very hard coping but again I’m better off on nothing since they didn’t help. Also helps to add one med at a time and see for yourself by taking detailed notes what does what to you and if it is actually helping or not. If you begin the whole regiment all at once… you won’t even be sure what is a side effect and what is a symptom. And you should take notes because brain fog makes it really difficult to remember the details from day to day. In some people, certain medications will increase confusion. I sometimes wonder if the doctors only thought I was improving because I could not participate reasonably on some medications because I couldn’t remember how I felt from day to day. If you get so forgetful you can’t complain it doesn’t mean you have improved. It just means you’re no longer able to articulate it. 5) Be kind to yourself and be gentle with yourself. Reassess all of your priorities and lower your standards accordingly. It’s OKAY to have down days. But be sure before you trade a good day’s energy for any task that it’s YOUR CHOICE to do so. I mean seriously… do not prioritize your good day energy and use it for someone else’s standards of whatever… Figure out exactly which things YOU don’t want to compromise on for YOU. And don’t compromise if you can help it. Meanwhile, feel free to compromise on ALL THE OTHER THINGS because you are going to have lots of times you simply cannot keep up. Don’t be afraid to ask for help because people cannot see your Sjogrens. Likewise, push on the days you can so you get to hang on to your physical and mental abilities as long as you can. There will be a day when you miss them. Don’t fret about that day that is coming. It’s a waste of the good days and now. Don’t let the ignorant asshats push you around or make you feel bad about your best. And for God’s sake don’t be an ignorant asshat to yourself. You deserve better. Finally, no regrets. Regret just keeps you from using the good days well. I try to consider this journey through Sjogrens syndrome sort of a life lesson in how I changed from a type A personality into a far more flexible self-aware person with self-esteem that is not based on my usefulness but on my character. Good luck. You’re going to need that and heaps of introspection and tons of humor to get through this but the good news is… it won’t kill you. It can make you miserable for the rest of your life though if you let it. Don’t let it. A sense of humor can be the best tool in your arsenal.
KHealey	I was diagnosed Primary Sjogrens approx 23 years ago. Started off with swellings around my saliva glands. I had constant infections in my glands. After a whole load of tests and no conclusion, I was sent to a specialist hospital. Had lip biopsy, blood tests and Dry eye tests. I have since been diagnosed with Lupus, Fibromyalgia, maltomas, Rheumatoid Arthritis. Treatments…. hydroxycholoroquine sulphate, prednisolone, vit D, Rituximab, Methotrexate. Rituximab helped most but I had a severe reaction 4 treatments in so had to stop. Recently I’ve had a lot of eye issues and had silicone put in my drainage ducts. I use several prescribed gels and drops to try and replace the moisture in my eyes.
CharlieOsgood	Hi all I was diagnosed 7 years ago and I have lupus, RA, OA, DDD, cfs, iih, reynaulds, and fibro, im on hydroxychloriquinine and pain meds, I get lots of pain but don’t always know which condition is causing it, I get dry mouth & eyes and widespread pain in joints, dry sinuses too. I run a group on Facebook for uk members called Sjogrens support uk also I write a blog myimmunesystemattacksitself.blogspot.co.uk
MaryAnnLaihr	My ANA is always positive! But they say it’s because I have other autoimmune diseases, MS, liver disease, hypothyroid, roseca, etc. So the test would not even be worth it?
MaryAnnLaihr	I have Multiple Sclerosis. I have all of these symptoms but I bet if I mentioned it to one of my Dr’s, they would treat me like I was a hypochondriac? Or flat out say it’s just MS?
GlyndaRitchiePierson	I was diagnosed about 8-10 years ago. Started with my eye doctor. I have tried punctual plugs which progressed to punctual cauterization. I use Restasis for my eyes and about 2 years ago I started having trouble swallowing and was given pilocarpine. It is a daily battle that goes along with my RA
theoangel10	I was diagnosed with Fibromyalgia and Undifferentiated Connective Tissue Disorder approx. 7 years ago. My ANA test results kept coming back positive negative positive or negative positive positive but never had 3 positives so my rheumatologist at the time said she felt either Lupus or Sjogren’s was lurking in the background. I then moved and was diagnosed with Generalised Joint Hypermobility Syndrome in December 2013 as well as confirmation of the fibro by a new rheumatologist but nothing was said re the UCTD. As time has gone on my condition has deteriorated quite dramatically and I also suffer with a lot of the conditions that are seen as common with fibro and joint hypermobility such as IBS, leg/foot spasms, depression, burning sensations, migraines, extreme fatigue, severe pain, recurring bursitis/tendonitis. joint dislocation, brain fog etc plus I have osteoarthritis, recurring superficial thrombophelbitis which often causes cellulitis, degenerative disc disease, vasovagal episodes, compromised immunity, menorrhagia, high BP, panic disorder, asthma and severe anaemia. I have just recently been diagnosed with Laryngopharyngeal Reflux Disease (LPR) too ! I also get frequent bouts of bronchitis, have had pleurisy but no pneumonia, dry mouth often with soreness/ulcers, dry eyes with fairly frequent bouts of conjunctivitis/blephritis, nose bleeds every two/three months, swollen painful glands, have issues with my teeth breaking/chipping/pitting & discolouration to them and problems with my jaw (TMJ) and also issues with swallowing at times … I have told my GP that I am supposed to have ANA, CPR, ESR etc bloods taken every six months to check the levels etc but to no avail until last week when I saw a different GP so I am now waiting for an appointment to have yet more bloods done. I also see various consultants … gynae, haematology, pain clinic and ortho but don’t see a rheumatologist at the mo ! Would like to ask others opinions … Is this just my fibro/joint hypermobility plus other conditions mentioned or do you think as my original rheumatologist something autoimmune is lurking ??? Also I think with just the conditions I have I should have regular rheumatology appointments … what do others think ??? Many thanks x
topekachristal	I think I may have Sjogren’s. I’m meeting with the rheumatologist next week after being referred from the allergist. I’m only 24 but in the last four years I’ve been diagnosed with IBS, Narcolepsy, Chronic Sinusitis and Recurrent Bronchitis. Since I was a child I’ve had extremely dry skin, ADHD and every once in a while my limbs would turn purple and become cold. I’ve had to get plugs in my eyes because of dryness and no amount of lotion seems to help my skin. Ive also had migranes for about 1 year. About 8 months ago my back started to fall asleep and now it goes numb several times a day. I’m not sure if it’s related but it’s terrifying. The most recent and most upsetting development is my lips. One day I woke up and they were bright red and swollen. By lunch they were beyond chapped and by night the skin had cracked open and was falling off in chunks. It is very painful and extremely embarrassing. I feel that it’s worth mentioning that my mother has Ulcerative Colitis and my grandmother had Fibromyalgia. Does this sound like Sjogren’s to anyone else?
KatrinaRose	I was dianoised 5 years ago. I first went for hair falling out, no energy constant pain weekly migraines, and no weight loss after having a baby. Got diagnosed with hypothyroidism, but still had a lot of symptoms. It took three years to get diagnosed. I was diagnosed with fibryomaylgia 3 years ago. have been on plaquilnil, prednisone, lyirca, meloxicam, tramadol, cycbenzenprine, anti depressiants, and synthroid. My symtoms are brain fog, joint and nerve pain, bad teeth, dry everything, butterfly mark, bowel issues, migraines, low energy. I have symptoms of lupus but I dont have the markers for it. My best advice is listen to your body. Stop when you have to even if you feel guilty. Eat as healthy as you can, and tell people. Explain to your family and friends until they understand that you have to limit yourself. I sent the spoon theory to everyone and told others to get them to understand. There are no awards for taking on more than you can.
KarlWolfe	Please get tested for any type of fungal infection. The symptoms overlap when the condition exists in the chronic stage…can be overlooked as a cause of CNS issues. Any type of fungal or mold infection can be similar to other illnesses but is not often looked for.
TallBird	After a three year and a half year journey with a myriad of symptoms I was eventually diagnosed with Sjogrens Syndrome last week via a salivary gland biopsy. When I first became unwell I was experiencing gritty, puffy eyes, constant dry mouth, terrible joint pain in my knees and fingers, muscle aches and fatigue/weakness, skin rashes, one sided headaches, tingling in feet in particular and hands, flu like feeling, chest pain and shortness of breath, frequent urination (approx.20-30 visits to the loo every day), tinnitus, nausea and inflamed throat. I still have these same symptoms three years on but in differiing levels of severity. One of the most bizarre symptoms I had at the beginning but thankfully has gone was a feeling of being constantly ‘spaced out’ and not with it mentally. Going outside was a scary experience especially when trying to cross roads and judge kerb heights. It was as if my head was full of cotton wool. The ‘spaced out’ feeling started after a couple of weeks of continuous extreme headache and head pressure where it felt as if my head was going to explode. I only experience mild problems with processing information now thankfully. I have been prescribed Hydroxychloroquine and eye drops. I take my hat off in admiration to anyone who endures this condition – the medical literature in many cases seems to minimise the severity of the symptoms and the effects on the quality of life of those living through this.
crybabycry	I was diagnosed with Sjogren’s 2 years ago after I was just diagnosed with MS. However it may have been present earlier. I’m 40 and at 19 I was diagnosed with rheumatoid arthritis but after the initial episodes it seemed to have gone in remission. Years later my RA doc said no you do not have this but you have the trait. Don’t get tested any more for it as it will always be positive. So confused I went away thinking what was it all those years ago. Fast forward a year later I have my first bout of numbness, doc said oh probably carpal tunnel. I also had vertigo really badly. 3 months later it was gone. Another year passed and the numbness returned in my legs this time. It kept getting worse. I had dry mouth I had been complaining about for a year. Finally I get an MRI and the test suggest MS. LP confirmed it. But my nuero here’s the dry mouth stuff and the RA and he has me get a lip biopsy. This is how we found I also has SS. But it is secondary to the MS. I also realized it had been years since I’ve been able to cry with actual tears falling. My eyes burn but no tears fall. Hindsight this was also a sign. You never know…
rebeccavaughan	If you are immune compromised, then it is imperitive that you get the flu shot. It is not a live vaccine and can save your life . Do NOT however get the nasal one because it is a live vaccine , also you should not be around someone for a week after they have received this kind.
southbendlindah	BarbaraGraziano southbendlindah Barbara, I was also told that I shouldn’t get the flu vaccine. My family is encouraged to get vaccinated, and my husband gets his every year. Last year, I contracted a strain of the flu that wasn’t A or B, and it landed me in ICU for five days… 🙁
BarbaraGraziano	southbendlindah do you do a flu shot every year? I was told to avoid vaccinations. What is your experience with vaccinations?
southbendlindah	I was diagnosed with sjogren’s/sicca syndrome about 6 years ago, at 50. I have many sjogren’s symptoms, except I do NOT have the the dry eyes/mouth. Because I had a positive ANA antibody blood test on more than one occasion, Lupus is also suspected. I have a very weak immune system, and have since birth. I was tested for MS, Epstein Barre and several neurological illnesses in my 30s and 40s. I’m susceptible to Meniere’s disease-like symptoms, which causes a complete loss of balance and comes on suddenly, usually at night. I’m also susceptible to UTIs, especially when fighting a virus. I have intermittent neuropathy in my feet and lower legs which causes bee sting-like sensations, and have had Bell’s Palsy and am prone to C-Diff. I take care to eat properly, rest ALOT, take vitamins and try to reduce stress in my life, as a simple virus can land me in the hospital. I was on plaquenil for a couple of years, but a rheumatic specialist at Cleveland Clinic decided that the risks did not outweigh the benefits. I also have many of the symptoms of fibromyalgia/lupus. It’s been very difficult to pinpoint the exact illness I suffer from, and after many years, I have decided not to seek a specific diagnosis, and have learned to simply manage the symptoms. I am blessed to have a wonderful primary care doctor, whom I trust. I have an open order for blood work, which I can have done if I’ve been extremely fatigued for a long period of time with no known cause, as one of my fears is that I’ll ignore a potentially treatable problem. I also have Tamiflu, which I can use in the event I’m exposed to influenza. The only prescribed medication I take is Ziac, to control HBP, and Cymbalta, which is to control the pain in my extremities. I eat healthy, and take a good multivitamin daily, as well as Vitamins C and D3. When I’m feeling a virus coming, I double up on the C and D, and take care to rest whenever I feel the need. Stretching helps when my arm and leg muscles feel tight. Aside from the acute illnesses, the most frustrating part of my illness is the ‘brain fog’/memory loss and the constant fatigue. My advice for a recently diagnosed patient would be to 1) find a doctor that you trust; 2) ask questions, and make sure you understand the answers completely; 3) eat for good health, take approved vitamin supplements; 4) reduce your stress levels; and 5) get lots of rest.
BarbaraGraziano	Jenna66 Hi Jenna: if you haven’t already, have your dr refer you to a urologist for interstitial cystitis, another autoimmune disorder of the bladder.

Obviously we are interested in anything you have to say so these questions are really only a guide. Feel free to add any links you think will be of interest as well.

Many thanks in advance.

43 Comments Posted on November 13, 2013June 25, 2017 Multiple Sclerosis, Patient Talk

Calling everyone with an autoimmune condition! Have you ever been infected with the Epstein–Barr Virus?

The Epstein–Barr virus is mostly known as the cause of glandular fever.

Autoimmune disease awareness

But in recent years it is also has been shown to be related to a number of types of lymphoma.

Increasingly it is believed the Epstein–Barr viral infection can mean a higher risk of certain autoimmune and other diseases. In particular Parkinson’s disease, Lupus (https://patienttalk.org/?tag=lupus) , rheumatoid arthritis (https://patienttalk.org/?tag=rheumatoid-arthritis), and multiple sclerosis (https://patienttalk.org/?tag=multiple-sclerosis).

While many people (maybe 90% of the population) have been infected with the virus very few of us show any symptoms.

The purpose of this blog post is to find out to what extent our readers with autoimmune and similar conditions have had the Epstein–Barr virus . Please take the poll to give us an indication.

It would be great if you would use the comments box below to say which condition you have.

Thanks in advance

Lindsay4	Strep several times in college (2001-2005); severe endometriosis (stage 4) at 28 that required surgery in 2009; have had 2 more surgeries since for endometriosis (stage 2 and 3 respectively); a very severe case of mono in 2010; in 2014, had my 3rd surgery for endo, and one month later I was diagnosed with LUPUS. I was only ever tested for Epstein-Barr when I got dangerously sick in 2015, and it came up positive that I’d had it. They said I didn’t have to do anything about it(???). They could never figure out what was wrong with me at that time though. Fatigue is insane. I take adderall just to be able to work, and I can STILL sleep all day on it. Don’t know what to do anymore.
Mamad03	I have MS, UCTD and Sjogren’s
GironLara	HELLO, Good-day To You All Dear Viewers Brothers and Sisters ,Friends ,I want to shear a testimony on how Dr Lugard help me cured a virus called herpes simplex virus, I am so very happy today because I am free from the disease/virus of Herpes, My name is GIRON LARA from USA , I have been having Herpes since the past two years now, and I have pass through many different processes in getting cured from the diseases virus of HSV2 but nothing was working out, a friend of mine on Facebook called Harry Lura introduce me to DR LUGARD,and also give me hes email address ( or ) http://drlugardspellhome.webs.com/ that he is the only one who can helped me get cured from my Herpes and any other diseases i may have , so I contacted him and have faith on him, All thanks to the gods of DR LUGARD , after sending me the herbal medicines which he has prepared for me, my life get transformed and everything was fine and Okay with me, till now I have been going to check up and its now going to tow-months now I am still negative. All thanks Goes to DR LUGARD and My Friend called Harry Lura for what she has done for me and my family… if you are also passing true problems, pains or any type of sickness or diseases i will advice you to contact DR LUGARD now by emailing him now at:( or ) You can also call him on these Mobile number okay . TRULY DR LUGARD YOU ARE THE BEST MAY GOD-ALMIGHTY REWARD YOU FOR YOUR GOOD WORK OKAY, I WILL CONTINUOUS TO TESTIFY OF YOUR GOODNESS UNTIL MY LAST BREATH IN THESE EARTH MY BEST REGARDS SIR. whats-app also now or on his web sit http://dr-lugardspellhome.webs.com/
IE	I have MS Primary Progressive, had mono as a teen and spinal tap revealed EBV antibodies.
lemonfoundation	aredmosquito MS is Lyme disease cover-up. http://www.cfsstraighttalk.blogspot.com
aredmosquito	I have MS, have never had mono, and was tested for antibodies to EBV which came up negative.
DebbyReaana	Relapsing Remitting Multiple Sclerosis.
RachelSouth	Fibro with other undefined and diagnosed with asthma last year, which is still not controlled.
andersoncarol1212	My name is Carol Anderson, I am here to give my testimony about a doctor who helped me in my life. I was infected with HERPES SIMPLEX VIRUS in 2010, i went to many hospitals for cure but there was no solution, so I was thinking how can I get a solution out so that my body can be okay. One day I was in the river side thinking where I can go to get solution. so a lady walked to me telling me why am I so sad and i open up all to her telling her my problem, she told me that she can help me out, she introduce me to a doctor who uses herbal medication to cure HERPES SIMPLEX VIRUS and gave me his email, so i mail him. He told me all the things I need to do and also give me instructions to take, which I followed properly. Before I knew what is happening after two weeks the HERPES SIMPLEX VIRUS that was in my body got cured . so if you are also heart broken and also need a help, y Unapprove \| Reply \| Quick Edit \| Edit \| Spam \| Bin

JosephDieva	I was dx with : Mono and Infectious Heppatitius in 1982 , dx with Eppstein – Barr virus in 1986 , dx with “Leaky Gut” in 1999 , dx with Hypo thyroidism in 2010 and dx with M.S. In 2013 ( my feet started to go numb in 2008 , a sign of M.S. to come ) !!!!!!
JackieBax	Fibromyalgia, Hypothyroidism
TinaMulhall tinamulhall@yahoo.ie 78.17.60.113	Ulcerative colitis. I had EBV and chickenpox as a child.
loulou02 lyndav1@live.com.au 49.181.78.27	I have fibromyalgia. Yes I have had EBV Ross River Virus and Barmah Forest Virus.
RandiLynnHart gimmedanger87@gmail.com 66.87.78.222	No EBV related anything for me.
Roxannestanbridge Roxanne_caldwell@hotmail.co.uk 46.254.249.208	Glandular fever at 18, MS diagnosed at 30 although had a few relapses from 18 yo
GinnyIckle pickledginger@gmail.com 208.103.65.134	Hx of Ebv, cmv, chicken pox, shingles x2, Lyme disease. Have celiac, multinodular thyroid, cf, fm, Sjogrens, t2diabetes, Dysautonomia.
Pam Crittenden plwc@comcast.net 98.209.15.5	Severe case of mono at 17 (1978) diagnosed with MS at 32 (1993).
GillianCunninghamWright gilldusty2@btinternet.com 86.146.4.251	I had EBV, chicken pox, scarlet fever, mumps, tonsillitis. Diagnosed with glandular fever in 2006, never recovered, now have M.E. Fibro and Type 2 Diabetes.
thequeenkat	I Contracted Mononucleosis When I Was 15, Which I Am Certain Was Followed By Me Developing Narcolepsy. I Also Have PCOS, Hyposmia, Auditory Processing Disorder And Now Am being Evaluated For Multiple Sclerosis. Narcolepsy And All Other Conditions Were Diagnosed In My Early Twenties, Although I Know I Had Them Most Of My Life. The MS Is A Recent Development. Sorry If My Post Is Typed Oddly, I Am Having Problems With This Android Phone.
KathyHastings	I was infected with EBV along with many other viruses in my body; prior to also dx with Celiac Disease.
JosephDieva	Yes , I was diagnosed with Eppstein – Barr Virus in 1986 !
CheyMcKenzie	Gladular Fever aged 13, diagnosed MS aged 41 but believed to have had it a few years by then.
JosephDieva	Was diagnosed with Mono and Hepatitis in April of 1982 , diagnosed with Eppstein – Barr virus in April of 1986 , developed first sign of M.S. IN SUMMER OF 2008 and finally diagnosed with M.S. in March if 2013 !
touzell	Had glandular fever 30 years ago.. 2.5 years ago diagnosed with psorathic arthritis and this year ensinophilic esophagus. Interested to further studies relating it all.
lemonfoundation	HIV-Negative AIDS: Is it CFS, GWS, or AIDS? Allied NATO Government is hiding millions of infectious NON HIV AIDS cases (like mine) under the “Chronic Fatigue Syndrome (CFS)” ICD-code. – Dr. Lorraine Day on Joyce Riley’s military show THE POWER HOUR (09/12): “…HIV-Negative AIDS cases falsely reported and treated as CFS cases may be one of the biggest cover-ups we have seen.” – In 1992 “…Newsweek made an even more shocking announcement: …CFS patients who had the same immune system deficiencies as the NON-HIV AIDS cases…”– Dr. Judy Mikovits stated on In Short Order (11/12) about CFS & Myalgic Encephalopathy (ME): “…consider this as NON HIV AIDS.” – Neenyah Ostrom’s book “America’s Biggest Cover-up: 50 More Things…CFS & Its Link To AIDS” cites: “Some CFS Patients May Be Non-HIV AIDS Cases.” My case goes up through the NIH, CDC, White House, WHO, to the UN. I testified federally in Washington-DC, and am published 24 times on 4 continents (including PEOPLE’S VOICE, FROM THE TRENCHES WORLD REPORT, PFLAG, & FUSE MAGAZINE). Everything about NON HIV AIDS (including my federal testimony): http://www.cfsstraighttalk.blogspot.com Or simply google “NON HIV AIDS”
NancyD64	Diagnosed with EBV at 16 after a year of being sick, missed a semester of high school. Diagnosed with RRMS just shy of 36 y.o. living, with it 14 yrs.
shurl Stirling	my son was diagnosed with neuro sarcoid, if was treated with steroids.if was diagnosed with other conditions because the neuro s mimics other conditions.checkout Joe Stirling on Google. He’s a rare case (less than 2 people suffer the neuro sarcoid in 100,000 ) nobody, not even professors know what causes it. ???? i can’t believe that.
virgo54	Had a very severe case of Glandular Fever over 30 years ago, was hospitalised for a week. 10 years ago developed Primary Progressive Multiple Sclerosis (PPMS)
CameoCamylMassey	Diagnosed with EBV in 1987. Had it for many years but none of the doctors knew to look for it. They just gave me antibiotics and amphetamines to keep me going, until my immune system collapsed. Wound up bedridden for 3 years, unable to use arms or legs, unable to chew food, no short or long term memory, lymph nodes swelled like ping pong balls and turned purple/blue, and would sleep 72 hours and still be exhausted. I finally overcame that and rehabilitated myself, but was then told I had Fibromyalgia and a compromised immune system. Since then I have had shingles that turned into MRSA, and a systemic infection that has led to 8 major surgeries to remove major parts of my body. Was just told by a Rheumatologist, that my Fibro is back in full flare.
graceg	In reply to MelissaKisnerSouthard.MelissaKisnerSouthard Hi my name is grace,what is Auto Immune Hepatitis,or can u tell me where to find the information on it. Thank you I have sle,ra,fibro, diabetes,etc. I have just found out over the phone about me having hep c. I just don’t get it?? Thanks for your posts. 🙂
Roxannestanbridge	I had glandular fever in 2000 and been treated for Labrynthitus x3 times since – until I got my MS diagnosis in 2011
Taneesa	I’ve had mono, phenomena several times and fevers out of the blue for no apparent reason since i was a child
KathyHastings	Yes on EBV, also Chicken Pox Virus, Herpes Virus; many were running rampant in my body, because my body was so busy trying to attack the gluten….all these virus attacked my CNS. Result Celiac Disease….anti-viral med….3yrs later….levels are down, but still considered high. So, I also have dx of CFS.
katieg	glandular fever at 18, hypothyroidism for 20 years, psoraitic arthritis over 10 years, MS diagnosed 2011 but optic neuritis in mid 1990’s
SallyNickle	I had Mono when I was 17.
MelissaKisnerSouthard	Yes! I had EBV when I was 18. never sick a day before that. Now I have Hypothyroidism, fibromyalgia, Lupus and Auto Immune Hepatitis. I have always thought it was connected to the EBV!!!

Leave a comment Posted on October 1, 2013 Patient Talk

October in Lupus Awareness Month – share to raise awareness please

This month is Lupus Awareness Month.

Lupus is part of the family of autoimmune arthritis conditions. To find out more about autoimmune conditions please check out our previous blog on the subject https://patienttalk.org/?p=939.

In fact different countries have different awareness days, weeks and months for different conditions. To learn more about Lupus check out our previous awareness blog here https://patienttalk.org/?p=270

For more information on events for Lupus Awareness Month please have a look at the offical web site http://www.lupusuk.org.uk/latest-news/lupus-awareness-month. There is a lot of useful information on the site.

Finally please feel free to share the graphic below which we have produce for Lupus Awareness.

Lupus Awareness Month

18 Comments Posted on September 26, 2013July 3, 2017 Patient Talk

Autoimmunity! What actually is an autoimmune medical condition? Updated with reader comments

Autoimmune disease awareness

On PatientTalk.Org we run an occasional series of blogs which try to bust the jargon used in the healthcare and medical industries. In today’s blog we are turning our attention to autoimmune conditions.

Autoimmune conditions are, to say the least, very unpleasant. Importantly they do not just appear in humans but in fact, in most organisms. Simply put autoimmune conditions are when the body fails to recognise one of its constituent organs as part of itself. This leads the immune system to, in effect; attack its own body or part of the body. This will often “present” as inflammation.

There are two main types of autoimmune disease:-

a) Systemic. This is where the sufferer’s immune system attacks the whole body. Lupus can be an example of this. To find out more about Lupus please see our awareness blog https://patienttalk.org/?p=270.

b) Localised. This is typically when an attack is made on a specific organ of the body. In the case of Celiac disease (https://patienttalk.org/?p=349) which affects the gastrointestinal organs or tissue.

Typical symptoms and signs of an autoimmune disease can include:-

1) Pain in either joints or muscles.

2) Fatigue.

3) Brain fog or cognitive impairment.

4) Numbness in the body’s extremities such as hands or feet.

5) Reoccurring rashes or hives.

Obviously if you suffer from any of these symptoms it is vital you see a doctor as soon as you can.

Interestingly autoimmune conditions occur more often in women than men. Indeed it has been estimated at up to 50 million Americans suffer from one kind of autoimmune condition or another.

There is, as of yet, no full list of autoimmune conditions but certainly they run into hundreds. These include multiple sclerosis (https://patienttalk.org/?tag=multiple-sclerosis), rheumatoid arthritis (https://patienttalk.org/?tag=rheumatoid-arthritis), psoriasis, Hashimoto’s thyroiditis, Graves’ disease, idiopathic thrombocytopenic purpura, and Addison’s disease.

Do you suffer from an autoimmune condition? If so it would be great to hear your story! You might want to consider some of the following questions:-

a) What autoimmune condition have you been diagnosed with?

b) What were your original symptoms?

c) What treatments did you use? E.g. Steroids. How effective were these treatments?

d) What one piece of advice would you give to somebody who has just been diagnosed with an autoimmune condition?

Please feel free to tell your story in the comments box below.

Many thanks in advance.

NicoleGoulemas	I have been diagnosed with rheumatoid arthritis. It started when i was 20. I just had a sore knee. Then 3 days later i had 2 sore knees. Went to the doctors and they gave me anti inflammatories. I went back a few weeks later with a sore jaw and he suspected arthritis so referred me to a specialist after doing a blood test which came back clear. The wait to see the specialist was around a year and in that year i went downhill fast. I lost my job because i took 3 days off in my probation period with a medical certificate. Their reason was i was unreliable. I spent most days in bed because i couldnt walk. Which took a toll on my relationship because i was unable to do household chores. My relationship ended and i moved back into my mums house where she became my full time carer. She prepared my meals and precut my meat (when i could eat it) by this stage (maybe 5 months) i had 2 sore knees, a sore ankle, a sore jaw that stopped me from eating and talking most of the time because i couldn’t open my mouth, a sore elbow and my hands had started to close up and i couldnt grip a knife or my hair brush. I had gone into a wheelchair coz it was too painful to walk and mum had to help me with personal care as well as cutting all my meals and having them prepared so all i had to do was reheat coz she still had to work. I got quite depressed as well. After my 21st i eventually got in to see the specialist who did more tests. It turned out i had seronegative rheumatoid arthritis. It didnt show up in a normal blood test so they did some other blood tests and found it. My arthritis is worse in the warmer months so I’m a little back to front. My gp had me on a mix of pain killers and anti inflammatories until i got into see the specialist. They then stopped the painkillers and started me on methotrexate and anti inflammatories with prednisolone. I was able to get out of the wheelchair and walk again and then my hands returned to normal. I still had pain and a lot of it. They then introduced another medication (i cant remember what one now) and it didnt work so they put me on arava with the methotrexate. The arava gave me a bad allergic reaction and i was hospitalized for 5 days. After that i was on methotrexate and sulfasalazine for the next 5 or so years. After about 3 years i kept feeling very sick. I told my specialists (each year i got a new one) and they didnt really do much to help. I complained for 2 or more years about it until one listened and i got in to see a biologic rheumatologist. The biologic rheumatologist was also the dr who diagnosed me when i was 21. So it was nice to see a familiar face. I started taking humira that stopped working after a knee arthroscope. I then got put on enbrel that i was allergic to and now im on actemra infusions and they work. Ive been on them for about 2 years now. Through all that i have been on and off prednisolone as well. It was a very long and bumpy road to finding a treatment that worked. I am a new person now and i can even work again. Some days are hard to work as i work in retail which was probably not a smart choice haha. I still battle fatigue and brain fogginess especially after a long day at work and sometimes i have to just sit in the car because i hurt but it doesnt last long because my meds work so after a good nights sleep i am ok again the next day. Advice i can give is never give up. It may be a long hard road to finding treatments that work but dont give up. The road will make u stronger and when u look back on where u have come from u will be proud of yourself. Every small victory gets u closer to the biggest victory, meds that work and a happier life. It may seem like there is no light at the end of the tunnel but it does come trust me. Its a hard depressing battle but when u can get back to work and have a better life it will have been worth the fight. And get a good support network. If anyone is negative get rid of them from your life for a while or permanently. Try to stay positive and go easy on yourself. If u need help ask for it. Dont feel bad if u cant get out of bed things will get better when u find the right treatment.
Mser1986	I can remember as far back as age thirteen or fourteen of having pain and weakness in my feet and legs. Sometimes I would cry from the pain. Playing volleyball was very hard on me but I loved the game. As I got older the pain and weakness got worse. My first hospital stay was when I was twenty two. I was there for about two weeks before the doctors decided that they didn’t know what was wrong with me. I was hospitalized a few more times before my doctors told me that I needed to see a psychiatrist that it was all in my head. My dad had to help me walk out of the hospital. Then an elderly neighbor told me about a MS specialist near my home to see. That was in 1987 the year I was diagnosed. When I finally found out what was wrong with me, I was relieved. I had a name for what was wrong with me. My new normal has me taking life one day at a time. Pain, weakness and fatigue are a part of who I am. But it does not define who I am. When I’m tired I lay down. When I feel MStrong I babysit my one and two year old grandsons. They are a huge handful but I love it. I’m from a family of thirteen children. I have six children and ten grandchildren. My advice would be this: take one day at a time, own your MS diagnosis, don’t let it own you. If you feel fatigued, then lay down and rest. YOU DONT OWE ANYONE AN EXPLANATION. Live life don’t wait till you feel better, that may never happen.
Sweett588	I was diagnosed with RRMS ( relapsing remitting multiple sclerosis ) in 2004. My neurologist now thinks it has progressed into Secondary progressive ms. I did not come out out my last relapse even after IV steroids ( solumedrol) and a month of prednisone. My original beginning symptoms were difficult to diagnose. They were numbness in fingers/ toes. Tingles/ electrical like impulses in my lips especially, but throughout my body. Weird sleep paralysis. And MAJOR fatigue. I was initially told by my family doc I had anxiety and given anti anxiety meds!!! But I knew something was not right with my body. I got an MRI and it showed 5 lesions on my brain, although my spinal tap came back negative. I had a 2 1/2 year old son , and we wanted 1 more child after I made sure it was safe. No one in my entire family either side has ever had MS. I had another child in 2006. Then I started Rebif. I immediately had an allergic reaction. Couldn’t breath! Switched to copaxone. I’ve been on copaxone ever since. I tried Tecfidera briefly after studying it during trials, but once it was clear it causes PML I went back to copaxone 3 x a week. I am JVC positive. My one piece of advice would be to study each drug carefully. They all have terrible side effects! Pick what is right for you. Start ASAP. STAY ON IT. SEE NEUROLOGIST MONTHLY AND GET BLOODWORK REGULARLY! Eat well also!

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RobynSmith1980	I have Mixed Connective Tissue Disease(MCTD). I was diagnoised in 2003, after I had my second child. MCTD is lupus, RA and one other autoimmune rolled into one. Some days I flare with lupus others with the RA. I have been on a whole bunch of medicines and hate taking them. Currently I am taking CIMZIA for the RA, that seems to be helping. I should also be taking methodrexate, planquienl, folic aicd, mutlivit. and I also suffer from depression. I take abilify for the depression sometimes. I am the only one in my family that has been dx with MCTD so I don’t know where I got it from. At first the drs thought that I was crazy saying that this hurts and that hurts, but finally my internal medicine (PCP) did some tests and said I think this is what you have. It was an eye opening for me. I had my third child and when I went to the rheu after she was born they told me that I should not have had her, because of my MCTD. Well my previous rhue did not tell me that! I was furious but glad to have her. I had a host of other medicial issues with the third child and it seemed to be never ending. But now I can say that I am much better. I do have to pace myself and make sure that I dont do to much and get plenty of sleep.
CindiBootheHancock	I have had M.S. for 34 yrs. My father, his first cousin, me, my daughter, my sister..we all have it. There may be more in my family I don’t know about. a) What autoimmune condition have you been diagnosed with? Multiple Sclerosis b) What were your original symptoms? The first symptom I remember was my hands not working to fasten my oldest daughter’s stroller strap. You remember, those that had the two circles? Was 34 yrs ago. Then when I was pregnant with my second child (born in 1981) my legs kept going paralyzed! Doctor kept saying it was because of the baby! But it continued after his birth. Then when he was 5 months old (late 1981) my feet were going numb but tingled up to the midcalf. Doctor finally said he wanted me to have tests for M.D. Yes, he knew MY father had M.S. but remember that back then it was NOT hereditary at all. And was considered terminal. I knew what was coming and said NO! So I did NOT get officially diagnosed till 1992 when I HAD to because I suddenly could not walk and one arm went dead. Yup was M.S. My eye doctor saw the symptoms in 1982. c) What treatments did you use? There were times I used Steroids for some symptoms. I tried Rebif. How effective were these treatments? Steroids, now I will not. They mess up my eyes. Rebif I had terrible injection site reactions, got depressed, had the flu, cold, bad fatigue. For 6 months. Then I said to heck with it and decided taking a med that I had to take meds for the symptoms….not cool. I quit. Now I take COQ10, B complex, ibuprophen, Vitamins E/D, iron, potassium, fish oil, and a multivitamin. As long as I take them regularly, get enough sleep, avoid stress when possible and don’t over due, no one can tell I have M.S. When I last saw my neuro he said “NO ACTIVITY” Don’t stop what ever I am doing! First time in 30 yrs I heard those words! I ALWAYS had active lesions! d) What one piece of advice would you give to somebody who has just been diagnosed with an autoimmune condition? Get doctors you trust, do your own research. DON’T STRESS!! And take care of YOURSELF….no one else will do it for you! And if your support system won’t support you, GET ANOTHER ONE!
DaphneRoberts	greetings everyone. i have multiple sclerosis and have been dx since 2002. it happened shortly after i had my third son with a recurring blind spot in my right eye, but this time it did not leave. i had been trying to find out what was wrong with me since i was twelve. i had recurring blind spots, but because i was born with congenital cataracts, they mis-dx me with glaucoma for years. i would get terrible tingling and pain in my legs, extreme fatigue in the summer, numerous headaches and so on and so forth. they couldn’t find anything wrong so they said i was just a hypochondriac. it wasn’t until my son was born that the scars actually showed up. i take Copaxone, baclofin, and an anti-depressant for the attacks and pain. i was taking steroids, but all of a sudden my body has had a very bad reaction to them. if i could give any advice, it would to be your own advocate and be kind but be assertive. it is after all your body and no one knows it, even the drs, like you do. if no one listens or disregards you keep at it, keep reminding them, and keep telling them. be persistent while being kind. God bless you all daphne roberts

RobynSmith1980	I have Mixed Connective Tissue Disease(MCTD). I was diagnoised in 2003, after I had my second child. MCTD is lupus, RA and one other autoimmune rolled into one. Some days I flare with lupus others with the RA. I have been on a whole bunch of medicines and hate taking them. Currently I am taking CIMZIA for the RA, that seems to be helping. I should also be taking methodrexate, planquienl, folic aicd, mutlivit. and I also suffer from depression. I take abilify for the depression sometimes. I am the only one in my family that has been dx with MCTD so I don’t know where I got it from. At first the drs thought that I was crazy saying that this hurts and that hurts, but finally my internal medicine (PCP) did some tests and said I think this is what you have. It was an eye opening for me. I had my third child and when I went to the rheu after she was born they told me that I should not have had her, because of my MCTD. Well my previous rhue did not tell me that! I was furious but glad to have her. I had a host of other medicial issues with the third child and it seemed to be never ending. But now I can say that I am much better. I do have to pace myself and make sure that I dont do to much and get plenty of sleep.
CindiBootheHancock	I have had M.S. for 34 yrs. My father, his first cousin, me, my daughter, my sister..we all have it. There may be more in my family I don’t know about. a) What autoimmune condition have you been diagnosed with? Multiple Sclerosis b) What were your original symptoms? The first symptom I remember was my hands not working to fasten my oldest daughter’s stroller strap. You remember, those that had the two circles? Was 34 yrs ago. Then when I was pregnant with my second child (born in 1981) my legs kept going paralyzed! Doctor kept saying it was because of the baby! But it continued after his birth. Then when he was 5 months old (late 1981) my feet were going numb but tingled up to the midcalf. Doctor finally said he wanted me to have tests for M.D. Yes, he knew MY father had M.S. but remember that back then it was NOT hereditary at all. And was considered terminal. I knew what was coming and said NO! So I did NOT get officially diagnosed till 1992 when I HAD to because I suddenly could not walk and one arm went dead. Yup was M.S. My eye doctor saw the symptoms in 1982. c) What treatments did you use? There were times I used Steroids for some symptoms. I tried Rebif. How effective were these treatments? Steroids, now I will not. They mess up my eyes. Rebif I had terrible injection site reactions, got depressed, had the flu, cold, bad fatigue. For 6 months. Then I said to heck with it and decided taking a med that I had to take meds for the symptoms….not cool. I quit. Now I take COQ10, B complex, ibuprophen, Vitamins E/D, iron, potassium, fish oil, and a multivitamin. As long as I take them regularly, get enough sleep, avoid stress when possible and don’t over due, no one can tell I have M.S. When I last saw my neuro he said “NO ACTIVITY” Don’t stop what ever I am doing! First time in 30 yrs I heard those words! I ALWAYS had active lesions! d) What one piece of advice would you give to somebody who has just been diagnosed with an autoimmune condition? Get doctors you trust, do your own research. DON’T STRESS!! And take care of YOURSELF….no one else will do it for you! And if your support system won’t support you, GET ANOTHER ONE!
DaphneRoberts	greetings everyone. i have multiple sclerosis and have been dx since 2002. it happened shortly after i had my third son with a recurring blind spot in my right eye, but this time it did not leave. i had been trying to find out what was wrong with me since i was twelve. i had recurring blind spots, but because i was born with congenital cataracts, they mis-dx me with glaucoma for years. i would get terrible tingling and pain in my legs, extreme fatigue in the summer, numerous headaches and so on and so forth. they couldn’t find anything wrong so they said i was just a hypochondriac. it wasn’t until my son was born that the scars actually showed up. i take Copaxone, baclofin, and an anti-depressant for the attacks and pain. i was taking steroids, but all of a sudden my body has had a very bad reaction to them. if i could give any advice, it would to be your own advocate and be kind but be assertive. it is after all your body and no one knows it, even the drs, like you do. if no one listens or disregards you keep at it, keep reminding them, and keep telling them. be persistent while being kind. God bless you all daphne roberts
ibumpn2thngz	Do you suffer from an autoimmune condition? If so it would be great to hear your story! You might want to consider some of the following questions:- a) What autoimmune condition have you been diagnosed with? MS, February 14th 2000 b) What were your original symptoms?l had many migrane headaches as a teenager, but the only thing that made me go see a doctor was the day I awoke, deaf in my right ear, change in sence of taste/smell and numbness that progrssively caused my to become imparied in my right leg (my driving was not possible because I could not judge where my feet where in relation to my body..I had to look at them to make them work or go in certain directions (very upsetting) but moreso with the numness of my “lady parts” being 18 years old I knew it was a problem!! bY THE time it was suggestive of MS I had gone through several other diagnosises!! 1st was “too much ear wax” uh, nope I bought and used an earwax removal kit and not a thing came out-oops, then I paid to go see an ear nose and throat doctor due to my hearing loss and it was determined then that I had an Acuoustic Neuroma Brain tumor…Nope ultimately after MRI’s and an LP it was concluded definatively that it was MS…my life was over, well the hopeful part of being a successful woman, rather a single woman with 2 children she loves very much with no support rom thier father…shm… c) What treatments did you use? E.g. Steroids. How effective were these treatments? The one thing my PCP did, saved me and it saved me good!!!! by mouth steroids but in large doses..lt wasnt as quick as the solumedrol IV but pre-diagnosis and going through so much that wasn’t what it was, was really great!! However, though my hearing was a little bit improved and my arm and leg and foot were on there was for repair I didnt let it go becuase I had the 18 year old paranoid as crap thing…Though I HATE IT SO MUCH, I am glad I was able to be diagnosed within months versuses years!! d) What one piece of advice would you give to somebody who has just been diagnosed with an autoimmune condition? The one thing I would have done differently would not be so paranoid of a flare-up, worst thing ever and l know how bad they are and can be lve went through so many that l know now my risk of permanant disability in those areas is immenant (if that’s how you spell that). Anyhow I wasted SO MANY OF My GOOD DAYS BECAUSE I WAS AFRAID OF THE BAD DAYS…. ADVISE IS TO LIVE!
rohrback2	In reply to Karen Brown.Karen Brown You are the first person that I have ever spoke to that has both Lupus and MS. I was told that I had Lupus at age 30. The MS came many years later at 50. I tried many of the Lupus and MS drugs, Never had much luck. Doctor placed me on Rutuxan and it worked for 6 years. Then I lost the drug because I was in a drug trial. Have been without it for a year. Increased optic neuritsis and MS and Lupus flares. Now looking at trying to get into s stem cell program at Hopkins… Good Luck with your battle Karen Brown
Northwood101	In reply to JulieHolland.Julie! I have hypoglycemia and was just diagnosed with MS in September.
Karen Brown	I have Systemic Lupus since age 19. Joint pain, pleurisy, pericarditis, pulmonary edema, mini-strokes, tremors, weakness. Naproxyn, Ibuprofen, steroids, aspirin therapy – many hospitalizations. Age 34 my legs went numb & I couldn’t walk. MRI didn’t show MS tho Dr suspected it. Recovered from that except some residual nerve damage infect. Was treated with steroids. Woke up one morning with numb right arm & lumbar puncture done. So in ’98 I was told I have MS. Steroids are typically the treatment for flares, whether Lupus or MS. I was on Copaxone 4 awhile. For years and years every new Dr I’d see, they questioned diagnosis. Yes u have it! No u don’t have it! One time I was put n hospital with apendicitis… Being prepared for surgery & then surgeon came n 2 room & said “It’s not apendicitis, it’s Lupus!” I know whether flare-ups are from MS or Lupus, treatment is generally the same… Steroids to clothe inflammation. I know stay out of the heat, rest more if I feel worse, try to avoid stress, & pace myself. I personally dislike meds due to side effects. Quit Copaxone & take Baclofen as needed, pain med as needed, & Adderol as needed. Taking Vita D3, B-12, folic acid, evening primrose oil. Fresh pineapple reduces inflammation. I have symptoms that now just are staying & slowly getting worse. Family members have auto-immune diseases…
ChipTori Munk	I have Hashimoto’s Thyroiditis which occurred after a head trauma in 1995. I had a goiter and had put on 30 lbs in less than a month. My TSH was only slightly elevated but my antibodies were off the charts. Then I was diagnosed with MS in 2012 after a neck injury. I was just diagnosed with Fibromyalgia and possible Raynaud’s. I was also told in 2010 that I have Hughes Syndrome (sticky blood syndrome). Thyroid issues run in my family, but none of the others. It’s been a few interesting years.
mandy1968	i had to have my thyroid removed because of hashimoto disease, i had a lump on my thyroid which tests indicated it was possibly cancerous, it was awful being told that and i just wanted it out of me, but after removal it was found to be hashimoto disease instead and i was told i would be more prone to other auto immune diseases, my husband also has progressive ms, i worry for my grown up children and my grandaughter incase autoimmune disease can be hereditory