Multiple sclerosis! What is your worst symptom of MS?

Multiple Sclerosis

Multiple Sclerosis

As readers of this blog will know one of the topics we are interested in is that of multiple sclerosis?

We are particularly interested in the experiences of our readers with MS.  So today we are running a short poll looking which hopes to find out what for you is the worst symptom of multiple sclerosis.  It would be great if you could take part in the poll below to share your opinion.

Feel free to use the comments box to explain in more detail about your problems with that symptom of multiple sclerosis.

Many thanks in advance


Multiple Sclerosis Hug! Have you ever suffered an MS Hug?

One of the big topics surrounding the symptoms of multiple sclerosis is the MS Hug.

Multiple Sclerosis

Multiple Sclerosis

But not all people with Multiple Sclerosis experience an MS  Hug?

Today we are asking our readers to tell us about the MS  Hig via our poll below.

It would also be great if you could use the comments box below to share a bit more about what it is like to have had an MS Hug.

Thanks very much in advance


At what age were you diagnosed with Multiple Sclerosis? Follow up poll!

Multiple Sclerosis Awareness Month 2016

Multiple Sclerosis Awareness Month 2016

A couple of days ago we invited our readers to take part in a poll regarding the age when they first

presented symptoms of multiple sclerosis.

If you have not already done so it would be great if you could take part by going to https://patienttalk.org/?p=1364.

This is the follow up poll.  This time were looking at what age you were diagnosed with Multiple Sclerosis.  the aim is to find out the global disparity between the presentation of symptoms and the final diagnosis.

The poll is below.  Thanks very much in advance.


 

BrendaStapleton I was 40, nearing 41 when I developed optic neuritis. I had been treating for Fibromyalgia for two years at that point. One year later, I began to suffer from facial pain and was diagnosed with Trigeminal Neuralgia. I was sent to the ENT 4 months later for excruciating ear pain and vertigo to the point I was losing my balance. I already had balance issues from a nerve injury from an overstretched sciatic nerve in my L hip post hip replacement in 2006.
I was thinking it was all related to some weird phenomenon of the hip injury. The ENT suggested an MRI which indicated lesions on my brain. I was referred to Neuro and had multiple electro-magnetic tests done. My R eye showed damage to the optic nerve. I have no function in the Motor Nerve in my left leg, so that was down for the count. However, the testing to my spinal cord was completely skewed. My family doctor is very upset as he feels this may have been treating me for fibro when in fact it could have been MS. However, nobody really knows when it transpired.
All I know is the cause is unknown and so is the cure. If ever a cure is found, I will be more than happy to spread the word.

LeeFischer Although I wasn’t diagnosed for at least 12 years after the first symptom, it was wonderful not suspecting MS.  I thought I was falling apart because of age and had my symptoms treated by the appropriate doctor.  It wasn’t until I finally had to mention to my family doctor, I had a balance issue that I was referred to the ENT.  Two years later (quite a waiting list), the ENT ordered an MRI which found the lesions on my brain.  Unfortunately, this was a shock to my family doctor as I had always gone directly to the appropriate doctor for the “fall apart” symptom.  Now I keep my family doctor informed!

MS and Diet – Multiple Sclerosis and the Paleo Diet

MS and the Paleo Diet

MS and the Paleo Diet

While doing some research on the internet for another multiple sclerosis blog post I came across a very interesting article about MS and diet.  The article explained that Jack Osbourne was using the Paleo diet as a way of treating his multiple sclerosis.  You can read more here http://www.examiner.com/article/jack-osbourne-talks-with-dr-oz-about-his-multiple-sclerosis-and-paleo-diet.

As long time readers of this blog know we are very interested in natural treatments for multiple sclerosis (you can read a previous blog on the subject here https://patienttalk.org/?p=1152) so we thought we would investigate the Paleo diet further.

So what is the Paleo diet?

Well its other name “the caveman diet” which rather gives the game away.  The Paleo diet (or Palaeolithic diet) is based upon the idea that the most suitable and healthy diet for a human is the one eaten by our ancestors before the  dawn of the agricultural age.  The idea being that one should try and eat a diet which can either be hunted (meat or fish) or gathered (mushrooms, fruits and berries etc.).  Obviously such a diet will be low on carbohydrates.  Followers of the diet typically drink water and also prefer their meat to be additive free.  In practice people following the Paleo diet eat meat and fish but try to avoid grains and pulses.

Okay all fine so far but how does this help people with multiple sclerosis?  According to its fans it can help with the symptoms of MS and other autoimmune conditions.

The rationale is that the changes in human diet over the last, say, 10,000 years have led to the rise of various different conditions in particular those associated with digestion such as celiac or IBS.  Further the view is taken that an improved diet can assist with diseases which were rare (or perceived as being rare) before we turned to agriculture for our food.  And this includes multiple sclerosis.

A quick trawl around the internet will give you plenty of examples of people who feel that they have improved since taking up the diet.  And this is where you come in.  We are really interest in your experiences with the Paleo diet for multiple sclerosis. Good or bad!

It would be really useful if you could share your story with other readers.  In particular it would be great if you could focus on the following questions.

a)      When were you diagnosed with multiple sclerosis?

b)      How long have you been using diet as part of your treatment for MS?  What sort of diet do you use?

c)       Do you use the Paleo diet?

d)      Could you describe a “typical” day’s menu?

e)      How successful has the diet been?

f)       How difficult or otherwise is it to keep to the diet?

Please can you use the comments box below to add your answers?  Feel free to add any links or any information you think will be of interest to other readers.

Many thanks in advance.

At what age did your first symptoms of Multiple Sclerosis (MS) present themselves? Please do take our poll

Welcome to our latest multiple sclerosis blog. Today we are continuing with some research with our readers regarding their experiences of

Multiple Sclerosis

Multiple Sclerosis

multiple sclerosis.  We would like to focus on the question of age when you first started to show symptoms of multiple sclerosis. Please note this is not about your age when you were diagnosed which will be covered in a future blog.

We are running a short poll on the question and it would be great if you could take part.

Feel free to use the comments box below to flesh out any thoughts about multiple sclerosis symptoms and age. Thanks in advance


 

sgrenyer was diagnosed end 2011 after doctors finally referred me to neurologist as I couldn’t and cant feel lower legs and feet. did have optic neuritis in early 1990’s  but no link made
TeaganBlythman I had my first major symptom at 23 and was diagnosed when I was 24. I am 26 now. When I tell people that I have multiple Sclerosis i usually get “but your so young” I then try to explain to them that I am at the prime age of developing the illness.
sally_martin I was diagnosed 2013, spent 4 months in hospital with it, came out in a wheelchair and now hobble about with a stick. My biggest issue at the moment is trying to get my driving licence back off the dvla due to m.s. my doctor and neurologist won’t help so what do I do now?
OmnaJoseph In reply to marshapennartz.marshapennartz

Hallo, pls tell me what is ” MS Recovery Diet, as I am also a  MS patient since 2010.

AngelaTackettMcKeever I was Dxed when i was 18. I lost my eye sight my hearing in my right ear i couldn’t walk barley swallow. Missed prom cause i couldn’t walk all my friends i grew up with left me as a friend cause i couldn’t do whatever it was thet were doing. My goal was to walk across the stage to get my hs deployment. ! It was scary and still is.
mariamalik i was diagnosed with MS in Nov, 2013…i had first clear symptom in july when i had an attack and my whole right side of body went numb..i went to docs but no one was certain what is happening and in nov i officially got diagnosed with MS
LindaCrisMendietta I was four when ms started showing up. My doctor dismissed me as a “clumsy child” I spent my childhood and teenage years always falling with sprained ankles and fractured bones. I passed out several times in school and the doc told me that I was over working myself. he didn’t listen to me until I was 20. thats when he sent me to an ent then from there a mri and then finally to a nuro. I faced three different possibilities (brain tumor, Lyme disease, or ms). on my 21st birthday i had a lumbar puncture and two weeks later i finally got my diagnosis. my mri showed over 10 different lesions.
jendie In reply to Heather Hoag.Heather Hoag I know what you mean about them not testing children for MS in the ’70s. I had balance problems and vision problems that cleared up on their own, so the doctors treated me like I’d been making up my sx.
GrammyApril In reply to dawnmariew.I am Canadian as well. There is not enough support or information. And most MS Clinics at the hospitals deal with RMS, or RRMS and not Primary Progressive MS or Secondary. I’m told it’s because there is less they CAN offer and little more they can do. It’s disheartening.
usafrnped while i was diagnosed at 61i am sure had symptoms way before then. we all have hindsight as to when we think MS started, just not the actual yes this is what you have!!
marshapennartz Mine began when I was 26…I had gone to two different Dr’s for back pain. They found nothing. I had some optic problems over the next few years and just thought it was allergies. I became pregnant with my son at 30 and had numbness in my right hand that wouldn’t go away. people just said “it’s probably the way the baby is laying. When my son was born my left leg started tingling. I went to a nero doc and said I needed an MRI. It only showed one lesion. I disregarded it and didn’t believe my diagnoses of MS. I continued to have symptoms much like Fibromyalgia so I assumed they made a mistake. I began falling in my 40’s and had problem with balance. I went back to the Dr. and began Copaxone. I really began to have problems and felt ill and had multiple infections. The shots were leaving huge knots under my skin (rock hard) the Dr. switched me to Rebif. I then experienced heart issues…thought every day I was having a heart attack. I got off and read lots of books. The MS RECOVERY DIET has really helped me. I also do water aerobics 5 days a week. Love it. I feel so healthy now and symptoms have slowed  a lot!! I will never let them give me any more meds. I think they ruined my immune system. I’m now allergic to..wheat…sugar…dairy…caffeine and many other things!! So embarrassing to eat at peoples homes.  I hope this info helps someone that is having the same issues!! God bless each of you on your journey!
mbergeron0707 I was FINALLY diagnosed after years and years of symptoms and feeling as though I was chemically imbalanced. My docs figure about the time the MS really started was when I reached 21. I was officially diagnosed at 28….it was a long long 7 years of torture and fear of the unknown.
KimDanielsSieberkrob I was diagnosed with RRMS when I was 40 years old . It took 10 years to get the diagnosis. I was so relieved when they finally figured out what was wrong with me, but also so scared and pissed off that I have to have this monster on my back. I’ve calmed down a little since them. I’m on Copaxone for 8 years now and doing fairly well, Compared to some others.
JohnDesautels I first think my first symptom happened when I was 15 or 16 after i went into a steam room/sauna at a presidents health club. I got very dizzy and dehydrated i had to get help walking to the pool to cool off.
MarciaStrausbaugh my son was diagnosed at 15 after presenting with stroke like symptoms.He is 26 now and is having more probs because gov says hes not disabled enough for any benefits.go figure right.
Heather Hoag In reply to sarah jane 1976.sarah jane 1976 That is the worst part, watching your family deal with the disease.  My kids aren’t concerned really right now (but I am doing really well right now) but my husband knows all that is happening and it’s hard to watch him try not to panic.
sarah jane 1976 I was just diagnosed with MS this last December at the 37 years old. I can’t walk without a walker and have had 4 flare ups this year. I can’t work anymore and I am a CNA. I can handle all that is and will happen to me, my son is just a little unsure.
CynthiaCollins When I find that I had MS my age was 31 yrs old
moz205 My husband collapsed on me one night. He subseqently passed a month later. The day after he fell on me I had trouble walking which continues today- 3 years later. When my symptoms worsened 2 years later and I fell out of bed knew I had MS. My MRI showed my brain lesions and incidentally lung cancer.