Looking for answers

[birthwarrior]

Hello!  I am new to your group, but not to MedHelp.  I have fibromyalgia, and have been seeing a rheumatologist for suspected autoimmune issues.  His testing has not turned up anything, and he has scheduled a bone scan and suggested I see a neurologist for evaluation.  Please read through what I am experiencing and tell me if it sounds like possible MS to you, more experienced folks with MS.

I think the oldest symptom I have is vertigo.  I describe the sensations as: 1) "Chinese therapy balls" rolling around the base of my skull, causing a heavy, spinning sensation and 2) a boat rocking sensation if in bed 3) disorientation when walking and even standing, like I am either too large for my surroundings or like I am shrinking.  

Over the past few years, muscle spasms & twitches that have drastically increased in frequency & severity in the past year or more.  At their worst, the spasms can extend from toes all the way up my leg to the middle of my back and last for 30 minutes at the most severe, tight level before easing.  

In January, I had an episode where I had crazy weakness in my legs and could not support myself.  Husband had to walk me marionette style to the bathroom or I had to drag myself in a sort of crawl.  I went to the dr that day, and my GP was useless.  Went back to his mantra of nothing wrong with me an antidepressant wont fix.  That was the day I changed GPs and new one sent me to rheumy.  

I also have weakness in my arms lately...as noticed when I tried cutting steak at dinner one evening and didn't have the strength to use the knife.  Since that night, I have noticed it any time I have tried cutting things.

Cognitive issues...I am a teacher.  My memory has gotten to the point that I have an iPad app seating chart with pictures of my students & I use it to prompt me on names.  I offer my students (HS science) extra credit if they notice me make a mistake when teaching.  I also notice people have a hard time understanding my words sometimes, as if I am slurring words or not enunciating correctly. (But my brain doesn't notice and I would think it was others' hearing if it weren't so many people noticing.)

So far, tests have shown that I have low vitamin D and have been on a supplement for it for 2 mths.  All other electrolytes/minerals are fine.  I have a positive ANA, hence the rheumy, but so far all other tests only show inflammation signs.  Sleep study showed that I only had 3.5 minutes of REM sleep all night, and was awake for a total of 75 minutes over the night.  No apnea or restless legs.  My rheumatologist is stumped, because he feels its more that just fibro.

Does it sound like possible MS?  Thanks in advance!

[birthwarrior]

Wow! Thanks for the fast replies!  I am not sure why my dr is doing the bone scan, except that he is looking for possible bone inflammation, because the tests for muscle inflammation were at the edge of normal and abnormal, so he wasn't sure.  Almost all my symptoms are on the left side, with the neurological symptoms.  The fibro pain is all over, but again mostly on the left.  The only thing on the right are migraines, but considering the right side of the brain controls the left side of the body, I have wondered if that is also a clue.  I am always light sensitive, and in my classroom either use a lamp or only half the lights.  

I am just now being sent to a neurologist, so have not yet had an MRI or other neurological testing.  At least my rheumatologist is open to everything, unlike my previous GP.  

Thanks again!

[Poppy7402]

Have you noticed your symptoms are any worse with fluorescent lights?  Several of the symptoms you mention are ones I now get with them.  I never had this problem until I had an episode back in August last year that I now suspect was optic neuritis.

Poppy

[SarahL2491]

A bone scan is not going to help you Dx MS as a possible.  As Kyle says, you will need an MRI, hopefully with contrast.  

Please see a neurologist, but be prepared for much testing and not so fast an answer.  It takes time.  Some get lucky but many of us have spent years chasing an answer and then not wanting it when we get it!

Keep us posted, we all learn from each other!

[kwarendorf]

Hi BW- Welcome to our corner of MedHelp.

As MS attacks the central nervous system, it's pretty tough to rule out any symptoms. Many of the ones you describe are classic MS symptoms. One difference is that MS tends to effect one side or the other, rather than both at the same time. Are your symptoms bi-lateral?

Blood tests are the best way to eliminate MS mimics, like Lyme disease. Other tests are part of the MS dx process as well; MRI of brain and c-spine with and without contrast, lumbar puncture, evoked potential and most importantly a thorough clinical exam by a neurologist (preferably one who specializes in MS).

MS is a clinical diagnosis that is supported by these other tests. Have you seen a neurologist?

Kyle

[birthwarrior]

I forgot...numbness and tingling, as well.  My toes are always numb, fingers/hands tingle a lot.  I have no sense of smell and can only taste sweet.  My tongue has a sensation of numbness/tingling, too, as if I drank too-hot coffee.  Part of my lip is numb, like at the dentist office.  And my feet/hands are usually cold.  Also,tests for diabetes are normal, and blood pressure is normal.