MS, Anxiety, Lyme, Migraine or Vertical Heterophoria? Dizzy & Muscle pain for 9 months.

New diagnosis and before diagnosis
1

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 amphetamine pills + 5 ecstasy pills + tried cocaine twice. 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 amphetamines. 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

2

hello Alex

I’m new here, so I don’t think I’ll be much help. From what I’ve heard and read, then ms is so very different for everybody.

Didn’t your neuro tell you what the white matter lesions represent? I can’t say I have that much muscle pain per se. Generally stiffness for me, so feeling like parts of my body have been pulled really tight - mainly my hips, and then aching in my thihgs, which I call “IBS legs”, as I always thought it was associated with that! I have had a ruptured l4/l5, so I would be wrong to try and link ms symptoms to the pain experienced with that awful episode.

I’m sure somebody with much more knowledge will be along to help!

Take care x

3

Hi Alex, You certainly seem to have a lot of stuff going through your headache t the moment, and rightly so with all the symptoms you are suffering. From my own understanding, ms lesions are usually to be found in specific areas of the brain. I can’t understand why no description of the lesions were offered as to what they were. I do get muscle pain, cramping etc, but not as you describe, although I do get random shooting pains. But we are all very different I guess. I often thought about lymes disease, but I am sure I would have noticed the ring like area where the tic has been. I guess we can all dismiss flu like symtoms on a daily basis without thinking there is something else causing it. Anxiety disorders can be caused by something prior to the symtoms showing themselves, and manifest itself later as non diagnosable symptoms. ie, numbness, tingling etc. however, in the event that no other clinical tests are positive, it’s all too easy to blame anxiety. However, you DO have lesions which need investigating or at least discussing properly with you. Anxiety from not knowing could be making your symptoms worse too. So it really needs further investigation. Active lesions that show up with contrast are probably responsible for symptoms at the time the scan was done. But the lesions are scarring from previous relapses and you may still be getting the effects of the damage they have caused however long ago they may have occurred. May be not as bad as when they first formed, but lingering in the background. Eg, your right leg could have gone completely numb at the time, but now It might just be slightly numb. My suggestion would be to write a list, probably a time line of all the symptoms you have had which you haven’t experienced previously. Even if you don’t think it’s neurological, let them be the judge. Maybe go back to your family doctor and explain you have had an MRI which shows lesions, and been told nothing credible. That you want to see a neurologist and get some answers. I would advise you don’t mention anything about the visual stuff, or the things you want to be tested for at this stage. If you go with loads of different possible ailments, they will think you are googling constantly and just give you an anxiety label once more, which would be an easy cop out, but not getting you the treatment you need. Act dumb, that’s what I do, and it doesn’t always go down well if they think you are doing their job for them. Neurologists are odd creatures. I would go in as if you are starting from scratch, let them re do the test if necessary, and maybe have a repeat MRI scan. If no answers are provided, then you might be as well to start bringing in the other tests you want doing. Don’t be fobbed off, sometimes, it takes just one doctor who listens and you are on to a winner. Good luck on your quest for answers!

4

Hi Alex, You certainly seem to have a lot of stuff going through your head at the moment, and rightly so with all the symptoms you are suffering. From my own understanding, ms lesions are usually to be found in specific areas of the brain. I can’t understand why no description of the lesions were offered as to what they were. I do get muscle pain, cramping etc, but not as you describe, although I do get random shooting pains. But we are all very different I guess. I often thought about lymes disease, but I am sure I would have noticed the ring like area where the tic has been. I guess we can all dismiss flu like symtoms on a daily basis without thinking there is something else causing it. Anxiety disorders can be caused by something prior to the symtoms showing themselves, and manifest itself later as non diagnosable symptoms. ie, numbness, tingling etc. however, in the event that no other clinical tests are positive, it’s all too easy to blame anxiety. However, you DO have lesions which need investigating or at least discussing properly with you. Anxiety from not knowing could be making your symptoms worse too. So it really needs further investigation. Active lesions that show up with contrast are probably responsible for symptoms at the time the scan was done. But the lesions are scarring from previous relapses and you may still be getting the effects of the damage they have caused however long ago they may have occurred. May be not as bad as when they first formed, but lingering in the background. Eg, your right leg could have gone completely numb at the time, but now It might just be slightly numb. My suggestion would be to write a list, probably a time line of all the symptoms you have had which you haven’t experienced previously. Even if you don’t think it’s neurological, let them be the judge. Maybe go back to your family doctor and explain you have had an MRI which shows lesions, and been told nothing credible. That you want to see a neurologist and get some answers. I would advise you don’t mention anything about the visual stuff, or the things you want to be tested for at this stage. If you go with loads of different possible ailments, they will think you are googling constantly and just give you an anxiety label once more, which would be an easy cop out, but not getting you the treatment you need. Act dumb, that’s what I do, and it doesn’t always go down well if they think you are doing their job for them. Neurologists are odd creatures. I would go in as if you are starting from scratch, let them re do the test if necessary, and maybe have a repeat MRI scan. If no answers are provided, then you might be as well to start bringing in the other tests you want doing. Don’t be fobbed off, sometimes, it takes just one doctor who listens and you are on to a winner. Good luck on your quest for answers!

5

Hi Alex!

What a mare! Looking at your lesions they are similar to mine & in similar places - although I have quite a few more all over the place including one on the brain stem

As far as MS is concerned you can have MS lesions throughout the brain including where yours are - BUT- and it’s a big BUT - in order to have a firm diagnosis of MS they must also be in specific areas eg the brain stem, spinal cord, optic nerve etc - you must have at least 2 lesions in these areas and they must have ‘formed’ at different times - ie at least 2 ‘attacks’. MS lesions can be any shape but are often ovoid - they can also present in a typical MS like shape eg Dawson’s fingers (if you have these it’s pretty well certain it’s MS)

Hope this makes sense!

I asked my neuro to go through my scans individually and I remember he said about the ones that look like yours - that it’s NOT age, NOT vascular, NOT Migraines and NOT smoking - these don’t present this way - he also got a bit technical and said you have to be able to compare them to the other type of scan pictures and previous scans to come to that decision. When I asked what they WERE caused by he said he’s not sure and that’s why we are playing the ‘wait & see’ game xx

Everyone is different I know but it goes to show that these things are complicated!

xxjexx

PS I loved looking at the scan pics - really interesting to see other people’s! I’d lve it if we all put them up on some board or something! A kind of mine’s bigger & brighter than yoours competition!!! Lol Yes - I think I’m sad!! :slight_smile: x

6

Thanks for your responses!

My neuro hasn’t said much yet. I’m seeing him again on November 11 to discuss the MRI. I have a feeling he’ll just say he doesn’t know, need more tests and most importantly to get a new MRI at least once a year to check for any changes in lesions. Obviously if I start having new symptoms then I should get an MRI asap to see if new lesions are responsible.

I’m at that point where we can’t say MS for sure but it must be suspected. I think I’d rather just know what’s happening even if it’s bad news so I know what enemy I’m fighting. Dizziness is 80% of my symptoms and I haven’t had any other major problems. If it was MS, wouldn’t I have other troublesome symptoms?

I started reading about MAV (Migraine-Associated Vertigo) which I’ve added to my list of potential causes. I don’t really have vertigo (nothing is spinning) but migraines should be considered. I only have a handful of headaches per month and they are not bad but migraines could be silent. I think Advil helps with my dizziness but it could just be my mind playing tricks on me.

According to an article by dailymail, “Migraine-associated vertigo is surprisingly common; it’s one of the most common causes of vertigo and an estimated one per cent of the population is affected”. Really!!!

I was hoping to have a phoria (heterophoria), that my vision was misaligned, but according to the optometrist I saw a couple days ago, that’s not it, my eyes are healthy. He couldn’t explain the floaters I’m seeing either. Everyone has them, it’s no biggy according to him. I have tinnitus for the last 3 years so it’s just another thing I must get used to. I really need to start those yoga classes I’ve been mentioning!

I think the muscle pain only appears when I am dizzy. My muscles are tense a lot of the time and I need to think to relax my muscles otherwise they tense up. I guess they are in “alert mode” which might be causing the muscle pain.

I did start a diary of my symptoms trying to associate them with an event but the symptoms are really random. No logic whatsoever.

@Kizzydane, I’d love to see your MRI and compare your lesions to mine. Would that be possible?

My lesions are not really close to the ventricle? Are they? (See http://i44.tinypic.com/2hdnvrd.jpg). Would you say they are ovoid shapped?

Thanks for the advice!