Do you think I may have MS?

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Do you think I may have MS?

Postby Patraw » Tue Apr 17, 2018 10:57 am

I realize that only a doctor can diagnose MS, but, I felt that some thoughts from people who have the condition might be helpful/insightful to me, so, here I am.

Here's what I've experienced so far:

On February 10th, I came down with a bad headache accompanied by fever blisters. I did not have a fever, sore throat, cough, runny nose, or anything like that. I just felt absolutely terrible and had very bad fatigue for about three weeks (just walking around the house would tire me out and I'd have to sit/lie down). I also experienced dizziness and balance problems (particularly when I looked up or down). It was quite frightening and I almost called 911 when it was at its worst, but didn't. Several times a year, I usually get a headache and fever blisters like that for no reason (chicken pox virus expressing itself maybe?), but not with those other symptoms I just described (it usually only lasts 2-3 days, not weeks).

Towards the end of that illness, the right side of my tongue/mouth started to feel numb and I had a pins and needles sensation in the skin around my mouth in that area. My sense of taste was also diminished. This also persisted for weeks but is pretty much gone now.

Then, around a week after the mouth business was going on, my vision started feeling peculiar, but I couldn't put my finger on what the problem was. While I was attending a city council meeting, on March 8th, I first noticed that I was seeing double. I could see out of the individual eyes fine (if I squeezed one shut, for example), but when I had both open, anything beyond about an arm's length started multiplying on me (I could still read a book/magazine, or anything else relatively close, with both eyes open). This double vision lasted for around a month and just started improving this past week or so and now I can see okay again, which I'm grateful for, as I thought it was going to be permanent.

I saw my doctor about all of this on April 6th (that was the earliest I could get an appointment), but he couldn't diagnose me with anything but the double vision and he ordered a MRI for me.

I had that MRI on April 10th. My doctor called me yesterday and informed me of the results: both my brain and spinal cord were full of lesions. I have to see a neurologist next (the doctor's office called and said that they sent the paperwork in this morning), which I'll probably do in the next 1-2 weeks, depending on when they can schedule me in for an appointment.

Based on my symptoms, and the research I've done, I think I may have MS, but my doctor said that damage from a virus (the sickness I had) or problems with my blood vessels are also possibilities in addition to MS. I feel more-or-less okay right now, but I'm definitely experiencing anxiety over those MRI findings and am very worried about my future health.

I'm not taking any medications (other than the occasional over-the-counter pain reliever like Aleve), I don't have any other medical conditions, I'm not overweight, I exercise regularly, and I do not drink alcohol, smoke, or use drugs.

Any thoughts/recommendations/suggestions would be appreciated!
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Re: Do you think I may have MS?

Postby Scott1 » Tue Apr 17, 2018 2:03 pm

Hi,

Those blisters and the way you feel when you have them sound like shingles. Do you see a doctor when you have them? You could treat that with valacyclovir and take a low dose to keep it at bay.

The lesions are suspicious for MS but there can be other reasons.

It would be normal to be a bit anxious when you have been left with these loose ends and so much time to think about it.

You can address the blisters as a separate problem. Your doctor can test to see if you have an active herpes zoster. It's the adult version of chicken pox and can be very debilitating. It's often triggered by too much sun or just leading an active life without proper rest. Coincidentally, I take 2x500 mg a day of valacyclovir as part of my MS protocol and have done for many years to control a different virus in the same family (EBV).

Regards,
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Re: Do you think I may have MS?

Postby Patraw » Wed Apr 18, 2018 7:27 am

My doctor did address the subject of Shingles on my initial visit, when I wondered if maybe it was the chicken pox virus acting up, but he didn't think that it was likely as I didn't also have itching or a skin rash. No, I generally don't see a doctor to treat the headache/malaise and fever blisters, because, up until now, that would only last 2-3 days at the most, not weeks (well, the blisters take longer than that to heal of course, but the other symptoms would go away relatively quickly).

I did have some blood work done too and that came back okay with nothing that my doctor thought was out of the ordinary.

I guess I'll just have to try to be patient and not worry too much until the neurologist gets a chance to examine me.
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Re: Do you think I may have MS?

Postby Scott1 » Wed Apr 18, 2018 3:33 pm

Hi,

It still might be shingles. There is a type without a rash and it requires a blood test to diagnose. It may be worthwhile getting a test for the antibodies. The treatment is same as I described earlier.
See here- https://www.healthline.com/health/shing ... #diagnosis

Whether you have anything else going on or not, any form of shingles is not fun. My ex wife always had bad blisters and pain but never described any part of it as itchy.

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Re: Do you think I may have MS?

Postby Patraw » Thu Apr 19, 2018 7:58 am

Maybe. Depending on what the neurologist finds, I'll try to remember to bring the subject of Shingles up again at my next appointment with my family doctor on May 9th. Shingles probably wouldn't have caused the lesions on my brain/spinal cord though, right?
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Re: Do you think I may have MS?

Postby jimmylegs » Thu Apr 19, 2018 8:21 am

hi p :) have any docs referred you in a preventive health direction, eg having a dietitian specifically assess the adequacy of your status quo nutrient intakes in relation to your lifestyle and environment in general? many get this wrong - even health pros. can be a good idea to invest some energy in this direction as well as that devoted to the pursuit of a dx.
there's a list of nutrient problems shared by the average ms patient. an easy first step is to ensure that your status is high normal vs low normal for any of those. and that *would* be a list of things you'd associate with lesions on the brain and spinal cord.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Do you think I may have MS?

Postby Patraw » Thu Apr 19, 2018 8:31 am

No, my doctor hasn't said much of anything regarding nutrition at this point (he mainly just wanted to know if I smoked, drank, or took any drugs). And that's all my health insurance wanted to know too, when I signed up, besides how many days a week I eat 3-4 servings of fruit/vegetables a day. I eat a pretty varied diet but it's certainly possible that I may be deficient in something.
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Re: Do you think I may have MS?

Postby jimmylegs » Thu Apr 19, 2018 10:02 am

be careful with the word 'deficient' - we are largely talking about low vs high normal - 'relative' vs 'absolute' deficiency when it comes to many chronic illnesses.

further, because reference ranges can vary widely from lab to lab, each patient needs to go in with a very clear idea of a tighter range considered 'optimal' based on healthy controls research findings, vs misc local lab settings.

lots of posts here at TiMS covering the kinds of nutrient tests to run, and the results targets desired to avoid matching an ms or other chronic disease nutrient profile.

for those who are able to step outside the constraints of existing insurance coverage, the price tag associated with independent action varies by country. in the US private serum nutrient testing, eg via life extension or similar, is pretty affordable compared to some other developed countries.

i slacked on picking up old test results and have just spent 2 months paying the price. now belatedly taking action on low (but not technically 'deficient'!) vit d3 and zinc results. hopefully that was my last experiment with 'laziness' (which in my case means putting work before self)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Do you think I may have MS?

Postby Scott1 » Thu Apr 19, 2018 1:57 pm

Hi,

There's no straight line between lesions and what caused them. Demyelination is a cardinal feature of MS but having lesions doesn't necessarily mean MS. A fair observation is an aspect of inflammation is at work when lesions are formed. If you are getting bouts of recurring blisters then that may be a manifestation of inflammation that you can see. Joining the two events together is a big leap. Nonetheless, herpes simplex , zoster and EBV have all been viewed suspiciously as being involved in MS (for example). If you can determine what causes your blisters and treat it you may simultaneously fix your fatigue. If not, then you have still eliminated something that may make your symptoms more difficult to manage.

Regards
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Re: Do you think I may have MS?

Postby jimmylegs » Thu Apr 19, 2018 7:38 pm

to clarify, outside the ms context there are most certainly clearly established straight line cause and effect relationships between nutrient deficiencies and lesions. poster child being vit b12 and the associated characteristic cervical and thoracic lesion pattern. not to mention less common cranial manifestations. hence the importance of ruling out b12 deficiency en route to an ms dx. an excellent nutrient to watch carefully and ensure high normal status.

copper deficiency is another example.

related
Nutritional Neuropathies
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199287/

open question
Vitamin D and Brain Imaging in the Elderly: Should we Expect Some Lesions Specifically Related to Hypovitaminosis D?
https://www.ncbi.nlm.nih.gov/pubmed/22423308
(i'm leaning to yes based on current xp)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Do you think I may have MS?

Postby Patraw » Fri Apr 20, 2018 9:02 am

Perhaps I'm being a bit naïve here, but, wouldn't popping a multivitamin every day pretty much take care of most people's needs as far as vitamins/minerals go? I eat a lot of milk, cheese, eggs, and vitamin-fortified cereal, so I wouldn't think B12 would be the problem, but I could be wrong.
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Re: Do you think I may have MS?

Postby ElliotB » Fri Apr 20, 2018 9:28 am

"Perhaps I'm being a bit naïve here, but, wouldn't popping a multivitamin every day pretty much take care of most people's needs as far as vitamins/minerals go?"

No.

A multi generally has very small amounts of many vitamins, For those that are ill or wanting to be as healthy as possible, larger doses of certain specific vitamins and supplements are likely needed. So yes, you probably need to reconsider your thinking.
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Re: Do you think I may have MS?

Postby jimmylegs » Fri Apr 20, 2018 10:49 am

completely your call -
do the actual math to ensure your intakes match daily essential nutrient requirements, work to rule out common nutritional issues seen in ms patients with quantitative evidence, and see what if anything is left to deal with
OR
rationalize status quo and its accompanying symptoms.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Do you think I may have MS?

Postby Patraw » Sat Apr 21, 2018 6:50 am

Micro-managing my vitamin/mineral intake doesn't seem necessary to me at this point in the diagnostic process. But, I'll keep it in mind, and, in the future, if my doctor(s) thinks I should be taking some supplements for whatever my condition turns out to be, then, certainly, I'll do what they say.

The hospital's neurology department finally called to set up an appointment yesterday, but, unfortunately, June 26th was the earliest date that they had available (which I took). Yikes! I didn't expect to get in immediately or anything, but my doctor said they'd probably be able to squeeze me into their schedule within a week or two--a little over two months is a mighty long wait. Alas, I can't afford to see someone outside of my insurance's roster of neurologists, so, I just have to take what they can offer. Neurology asked me if I'd ever had a CT Scan, EEG, and some other tests (which I haven't), so, it sounds like they're planning on giving me the works when I do go in.
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Re: Do you think I may have MS?

Postby jimmylegs » Sat Apr 21, 2018 10:25 am

your call for sure - best of luck with the doctor knows best approach. can't do it myself, not with my xp anyway.

possibly of interest introductions-f20/topic28969.html
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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