Myasthenia gravis – What is Myasthenia gravis? What are the signs and symptoms of Myasthenia gravis?

Myasthenia gravis

Myasthenia gravis

Welcome to the latest in our series of informational blog posts which look at various different autoimmune conditions.  Today we are exploring Myasthenia gravis – looking in more detail at the signs, symptoms and treatments of this condition.  To find out more about autoimmune conditions in general please have a look at our previous post on the subject https://patienttalk.org/?p=939.

As always if you are concerned that you have any of the symptoms of Myasthenia gravis  we would advise you to see a healthcare professional as soon as possible.

So what is Myasthenia gravis?

It is an autoimmune condition which affects 1 in 10,000 people in the UK; according to the NHS.  Interestingly it seems to, typically, effect women under 40 years of age and men over 60.

Simply put it is a condition which leads to muscle weakness.  In particular voluntary muscles which control the movement of things like chewing and swallowing as well as the eyelids.  In more serious cases it can affect those muscles used in breathing.

Typical symptoms include:-

Problems with the eyes are often the first noticeable symptom.  This could include double or blurred vision.  Droopy eye lids are also common.

Dysphagia or difficulty swallowing.  This often leads to slurred speech.  Again a common symptom.

Breathing difficulties in bed or when exercising.

A myasthenia crisis can occur because of swallowing or breathing issues and leads to hospitalisation

Movement issues such as difficulty walking or a drooping head.  This makes physical labour harder for the patient.

Myasthenia gravis occurs because  the body’s immune system creates proteins which attach the muscle receptors.

Treatments typically consist of immunosuppressants and if symptoms persist a steroid treatment may be employed.  In a few rare cases, where the patient is over 60, it may be considered necessary to remove the thymus gland in an operation called a Thymectomy.  This operation can help the immune system rebalance itself.  Where problems with swallowing have become very serious then intravenous immunoglobulin therapy could be applied in a hospital setting.

Do you have Myasthenia gravis?  If so we would love it if you could tell your story.  Please use the comments section below to share anything you think will be of interest.  In particular please could you think about the following questions:-

1)      What were your first symptoms of Myasthenia gravis?

2)      How were you diagnosed?  How long did it take and were any other conditions ruled out?

3)      What treatments have you received and who effective were they?

4)      What was the effect of Myasthenia gravis on your lifestyle?

5)      What one piece of advice would you give to somebody who has just been diagnosed with Myasthenia gravis?

Many thanks in advance for all your help!

 

LyneneLGros I was 2 1/2 yrs old when i was diagnosed. Im 41 and have never lived with this disease. My mother was told i would die at 15. Im a walking and seeing miracle! God has healed me. Ill always owe him my life for giving me life.
mamajanie In my hubs case eye issue was in 2010…drooping lid double vision…dr. visit yeilded a prism in lens….over the years weakness…started c-pap june 2013 with developing jaw issues, and throat, allergies…ent dr. Found nothing…heart lung Dr. Foynd nothing…fell 2-3 times…neuroligist diag. Mg sep. 2013…intensive care un oct….ivig caused severe kudney failure…now on dialysus…mestinon helped tempirarily..steroids cause bad side effects…high blood sugar

Hashimoto’s thyroiditis. Signs and symptoms of Hashimoto’s thyroiditis.


Hasimotos

Hasimotos

Welcome to the latest in our series of informational blogs about various autoimmune conditions.  To find out about autoimmune conditions in overview please have a look at a previous post of the subject (https://patienttalk.org/?p=939).   We are also hoping that this blog will provide a forum for people with Hashimoto’s thyroiditis to be able to share their story.  Hopefully it can become a resource to provide support and encouragement for others.

Thyroiditis, by the way, refers to a swelling/inflammation of the thyroid. This can lead to either under or over production of thyroid hormones.  Thyroid hormones have a significant effect of the body’s function and can include:-

  • controlling your  body’s growth and its metabolism
  • heart rate and body temperature
  • and the ability to convert food to energy

It is worth noting that there are various different kinds of thyroiditis of which Hashimoto’s thyroiditis is just one.  Hashimoto’s thyroiditis is where the human body’s immune system attacks the thyroid i.e. an autoimmune condition.  This in turn leads to the swelling of the gland and the development of goitre.  Goitre is where the swelling of the thyroid leads to an abnormal lump in the throat.  Please note that 1 in 20 cases of goitre are related to thyroid cancers so please contact your doctor is you have any concerns.

In Hashimoto’s the damage to the thyroid takes place slowly but will lead to hypothyroidism.  Hypothyroidism is where the levels of thyroid hormones in the blood are too low.  The people who develop Hashimoto’s will present the symptoms of an underactive thyroid.  These can include:-

  • Depression
  • Fatigue or tiredness
  • Putting on weight
  • Constipation
  • Dry skin

To date doctors are not 100% sure of the causes of Hashimoto’s thyroiditis. Whilst there is no cure per se there are treatments which replace the thyroid hormones.  However in a number of cases patients have proved to be allergic to the treatments. As we said at the beginning of the blog we are very interested in hearing the stories of people with Hashimoto’s thyroiditis.  If you do have Hashimoto’s thyroiditis it would be great if you could share your story with us in the comments box below. You may care to think about some of the following questions:-
a)      What were your first symptoms of Hashimoto’s thyroiditis?
b)      How did your Hashimoto’s thyroiditis progress and over what period?
c)       How were you diagnosed with Hashimoto’s thyroiditis?
d)      What treatments did you receive and how effective were they?

Please feel free to include anything else you think may be of interest.  For example do you have any other autoimmune conditions?  We are sure what you have to share will be of great interest to our readers. Many thanks in advance.  


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

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

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!!!

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

Lupus Awareness Month