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Multiple Sclerosis Message Board


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Hi to all!

I’m 32 and 9 months ago in February 2013 I started to have dizzy spells which became almost constant. I would describe it as some kind of disequilibrium, a feeling of drunkenness like I had too much alcohol to drink but sober.

In addition, a couple months later in April 2013 I started to have occasional pain in my muscles, legs and/or arms. The muscle pain is very localised in one random spot and can be replicated by stabbing your arm or leg really hard with your finger for example. I don’t know if it’s really pain, maybe more soreness like after an intense workout, weight lifting etc…

In March I was in Europe and I saw an ENT which couldn’t find anything wrong. Then I saw a Neurologist and got an MRI which revealed 4 white matter lesions (See http://i44.tinypic.com/2hdnvrd.jpg).

I returned to Canada in May and since, I’ve been randomly feeling all sorts of other weird symptoms which are mostly temporary and more inconvenient than debilitating. For example I sometimes felt I had trouble breathing like someone had their hand around my throat and were tightening their grip. That would last a couple hours. A couple times every month I’d have this really strong and sharp pain only in my left eye. Also, some minimal tingling in legs + floaters in my eyes + feeling I’m searching for my words (Tip of the tongue phenomenon) + stiffness in my neck + some kind of weird numb feeling at the tip of my left toe.

I sometimes have headaches but not more than before. I don’t believe I’ve ever had vision problems apart from the pain in my left eye, definitely no optic neuritis. I do sometimes need a couple seconds for my vision to focus on a word or close objects (Presbyopia?). I bike 50 minutes every day to go to work and I have plenty of energy. I sleep relatively well BUT I think my symptoms worsen if I don’t get a good 8 hours of sleep.

In Canada, I saw an internist doctor and spent an hour talking about all my symptoms. He says I can’t have Lyme disease because I’ve had no rash, no joint problem, no fever, no flu like symptoms. His conclusion was that I have an anxiety disorder. He says brain lesions are common and might not be the cause for my symptoms.

In September I saw my first Canadian Neurologist who spent an hour questioning and testing me, Babinski sign etc. Nothing abnormal. I got a second MRI with contrast this time. The lesions have not changed in 5 months and nothing alarming to note with the gadolinium. That’s pretty good news!

When I was 20 years old, I often went to raves and after-hour parties and took a couple different drugs. Over a period of 12 months, I must have taken 20 and illegal substances>. I know it’s bad, I regret it and would NEVER want my kids to do this! I found a study that shows 0.5% (1 in 200) young adults have brain lesions. That’s a lot! Scientists found a strong correlation between brain white matter hyperintensities (WMH) and . I couldn’t believe it when I read this! My lesions could have been caused by drugs and absolutely not related to any demyelinating disease! That’s kind of good news!

I’ve been a heavy smoker for 10 years and quit a year ago. Smoking could cause white matter lesions? Don’t remember if I read this somewhere.

There are two conditions I’d like to get tested for: “chronic subjective dizziness” and “Vertical Heterophoria Syndrome”. In both cases, muscle pain is not part of the symptoms but that could be caused by anxiety which could be caused by one of either condition. It’s amazing to read about all the symptoms anxiety could be responsible for, basically every possible symptom in existence! Only thing is I don’t feel stressed, I have a pretty good and stable life. Can you have an anxiety disorder without feeling anxious?

I got in touch with “Vision Specialists of Michigan” regarding Vertical Heterophoria Syndrome and I have high hopes this is what I could have! My eyes could simply be misaligned and I’d need a new pair of glasses which include correcting prisms. I scored high on their questionnaire and when I have symptoms and cover one of my eyes (so both eyes don’t need to focus), I really do feel the symptoms diminishing. I thought the placebo effect might be responsible but I tried it 3 times and the results are very similar! I’m going to an optometrist to get this tested soon. If I want to see an ophthalmologist, it’ll take 6 months or more in Canada!

I want to get an electronystagmography (ENG) which is a diagnostic test to record involuntary movements of the eye caused by nystagmus. It can diagnose the cause of dizziness by testing the vestibular system. This could truly help diagnose my main symptom which is dizziness. I need a referral from an ENT.

For some, migraines cause pretty nasty symptoms and can also cause lesions. I don’t really have headaches but there are “silent migraines” so that’s also a possibility.

Lyme disease might be the “better” disease to have as it’s curable with antibiotics and can cause all my symptoms.

I’ve been thinking about Multiple Sclerosis quite a bit which could be responsible. Do I have an autoimmune neurologic disorder? I hope not!

Last on my list of possible diagnostic is anxiety which could be the cause to all my misery.

With all these possible diseases and conditions, a healthy lifestyle is always highly recommended. Two months ago I started biking to work (11km a day). I’m starting yoga in 2 weeks. I’m trying to eat healthier and reduce inflammatory foods like red meat, etc…

Some days I feel totally fine (35% of the time) and I never forget to thank my own personal god for a symptom free day. When I feel like crap, I repeat a couple times a day “Please allow my family and I to be healthy…” My mom has lung cancer so she could really use some good voodoo. I’m not religious at all but feeling like someone is watching and listening feels good.

Questions – I’d greatly appreciate your opinions on any of the following:
- What does the muscle pain feel like for Multiple Sclerosis? Soreness like you just did some major exercising? How would you describe MS muscle pain?
- Even though I’ve never had a rash, no joint problem, no fever, no flu like symptoms, could I still have Lyme Disease?
- Can you have an anxiety disorder without feeling anxious?
- Only active lesions that stand out in MRI with contrast can be responsible for symptoms for MS?
- Have you ever tried the electronystagmography (ENG) test?
- Have you ever heard of Vertical Heterophoria? Do you know anyone that’s required prisms to fix an eye misalignment?


Thanks to all! It feels good to be able to talk about it!
Alex
Alex,

Brain lesions can be caused by a variety of problems and smoking has been shown to be one of many possible causes. Your lesions could also have been present from childhood due to a high fever. There is really no way to see onset of lesions if you have them present with your first MRI. Your symptoms appear to come and go without an "extended stay". I think you might be surprised at the number of people who have anxiety or stress either of which can cause MS like symptoms without the patient feeling that hey are having anxiety or stress issues. Each of us have different tolerance levels for stress and/or anxiety. Once your body reaches your tolerance level, a cascading effect of symptoms may present. If MS remains a question, you need to seek the counsel of an MS Specialist. Your mother's cancer brings stress as most chronic or terminal conditions do.

Your exercise regiment is good, but like with many things, moderation might be needed. Muscle pain can come from issues such as a vitamin deficiency (check with a blood test), dehydration, or a need for stretching. It is difficult to know how to describe the MS pain as it is not "textbook" and varies both objectively and subjectively. I can have muscle pain and joint pain at the same time. Often my joint pain can be directly related to my muscle weakness and exhaustion which can cause the skeletal frame to be unbalanced and the resulting stress can cause pain.

Lyme disease can be missed. A blood test specific for Lyme disease must be made and the testing done in a qualified laboratory. This is a specific test. You need not worry about any outward signs. Some tick borne problems can also remain dormant before becoming active. Again, blood tests are needed.

If you have MS, any lesion can cause a symptom, active or not. I have leg issues that stick with me 24/7. The contrasting dye will "light up" active lesions which is helpful in looking at any progress or when you have so many lesions it is the only way to see new activity. Lesions may also heal with the effects being missed or non-existent.

An ENG is not as sensitive as a VEP (visual evoked potential). None of these tests is specific for MS nor are there any specific tests for MS available.

Floaters are not part of MS and can increase in presentation as we get older.

I would certainly continue with the tests and definitely encourage you to see an MS Specialist if you wish to lay aside this concern. If you can, maintaining a symptom journal might help you determine triggers such as diet or life events. :angel:





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