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Do I have Multiple Sclerosis? I hope not!

Hi to all!

Early February 2013 during a trip in Asia I started to feel brief episodes of unsteadiness and loss of balance. After a couple weeks, this sensation of “feeling drunk” or “floating” was no longer temporary as I was feeling it constantly. I went to see an ENT specialist thinking it could be a problem with my middle ear but he found nothing.

After Asia I traveled to Europe in May (4 months later) where I started to feel pain in my arm and leg muscles. It was the kind of pain you’d feel after doing an intense physical workout like weight lifting. This pain would come and go; sometimes I’d feel it just in my left forearm, an hour later it would travel to both my legs then disappear, constantly changing. This lasted for three weeks and hasn’t been back since, thank god!

After researching my symptoms online, I found multiple sclerosis could be one of causes to my troubles. For this reason, I took an appointment in Paris with a neurologist and got an MRI of my brain (See MRI images attached). Unfortunately, the results were not as I had hoped and the images showed anomalies (lesions). The doctor didn’t have much to say without doing additional tests. On the report, he concluded by saying “These lesions are not very specific because of their number (4) and the absence of any lesion on the posterior fossa.”

I’m back in Canada now and I need to follow up by doing more tests: MRIs + lumbar puncture etc… I’m worried that the health care system in Canada won’t properly take care of me. Its 2-3 months to get an appointment with a neurologist! WHAT! It was 1 week in France! The waiting time for an MRI in public hospitals is 8 months minimum or you need to pay 700$. So I just signed up for a personal health insurance but I had to lie on the form about my symptoms otherwise they would have excluded any expenses related to my condition. I hope they don’t find out I had these symptoms before signing up! It’s when you really need help that it’s the hardest to get! That’s crazy!

The good news is that my symptoms currently are very minimal as I just feel minor unsteadiness. Some days I feel totally fine! I’ve learnt to live with my tinnitus which started 4 years ago and I could learn to live with my current condition if it doesn’t get worst but I might just be in remission waiting for a relapse. I just spent more than a year travelling the world, I’m getting married next year, we bought a house and are thinking of having children soon, I have so much to do and so many projects on my mind and I’m only 32. This is a seriously debilitating illness; 60% of people can no longer walk 20 years after onset.

The neurologist in France mentioned that he had seen these types of lesions just disappear. I’m an optimistic person and I want to think this is possible. I’m also realistic and my symptoms and initial MRI do point towards MS. What else could it be? Is there any other disease that could be responsible? I’m slowly preparing myself for a diagnostic of MS and I’m scared that it stops me from living a “normal” life.

I read a lot of information about multiple sclerosis and lots of people are living well with this disease. You need to exercise, eat well, get plenty of rest; the recipe for healthy living. Some medicines exist to delay relapses but they are not without side effects and cost quite a bit of money. To help with remyelination which can improve some of the symptoms and if you have 20-30k $ lying around, you can go to a stem cell clinic in Central America or Germany (like Jack Osbourne). Also, I believe within the next 5-10 years, we’ll find an actual cure for MS or at least it’ll become easier and cheaper to get stem cell treatment in USA and Canada. 1 to 3 people for every 1000 people will have MS and 2/3 of these people are women so you are pretty special if you get this.

-Have you heard of brain lesions just disappearing? I hope I’m not being too optimistic.
-Are you familiar reading MRIs? Do you have an opinion on the MRIs I’ve attached?
-Have you been diagnosed with MS and you are living well with it? Do you have a secret trick to manage?
-Just in case, I’ve taken a complementary health insurance and a 20 year life insurance so if I get bad news and something happens to me, my loved ones and I can get some extra help. These will be a LOT harder to get after a diagnostic. Has anyone else done this after feeling symptoms? I have NOT yet seen any doctors in Canada about my symptoms.

Once my health insurance approves me I’ll go see a general practitioner to get a prescription for a neurologist who’ll prescribe additional tests and we’ll take it from there. I’ll update this post with my results.

Thanks to all for your support!
Alex

MRI IMAGE: http://i44.tinypic.com/2utiujp.jpg

Hi Alex, and welcome :slight_smile: I’m not a neuro or radiologist, but know a wee bit about MRI and the brain so have had a look at your images. I’m afraid the neuro was spot on: they are not specific to any particular condition (including MS) which means narrowing down the cause will rely on other tests (eg lumbar puncture and VEPs) as well as your clinical exam results. Tbh, I wouldn’t get another scan yet, especially if it might cost you money in the long run (eg if your insuranceas all it is likely to show is the same as the Paris scans. Probably better to wait for new symptoms, IF they ever happen. Please be careful with the insurance stuff. I don’t know if it’s the same in Canada, but if an insurance company find out that you had symptoms before you took out the policy and you didn’t declare them, the policy will be void. I’m not sure where you got the 60% won’t be walking after 20 years statistic from, but that’s certainly not true in my experience. Maybe they meant not walking without some kind of aid, but that might just be a single walking stick. Most people with MS do not end up in a wheelchair 24/7. As far as doing well goes, yes, I’m doing great and many of my friends are too. There’s no trick to it. Tbh, it’s mostly genes and getting on the right meds, but there is no harm in eating sensibly, keeping fit and stretching regularly, not smoking (bad for MS) and resting when you need to. Finally, yes, brain lesions can disappear. It is most likely in cases of viral or infection caused lesions, eg ADEM, but can happen in other conditions too. The main difference between ADEM and MS MRI is that ADEM lesions disappear over time whereas MS lesions increase in number over time (with the odd one disappearing, but new ones forming). Hth. Karen x

That should say: (eg if your insurance company ask for the money back)

Hi Karen and thanks for your answer!

I’m glad to hear you are doing great! Were you diagnosed a long time ago?

The statistic about 60% not being able to walk comes from this 5 year old article:

“Some people with MS experience little disability during their lifetime. But up to 60 per cent are no longer fully able to walk 20 years after onset…”

I’m anxious to start the testing process to find out what’s really going on with me.
Thanks!
Alex

Hi Karen and thanks for your answer!

I’m glad to hear you are doing great! Were you diagnosed a long time ago?

The statistic about 60% not being able to walk comes from this 5 year old article:

“Some people with MS experience little disability during their lifetime. But up to 60 per cent are no longer fully able to walk 20 years after onset…”

I’m anxious to start the testing process to find out what’s really going on with me.
Thanks!
Alex