MS? GBS? Anxiety? Or...?

[kim]

Dear Doctor:
I am a 38 yr old female.  1.5 years ago I had a 6-month long attack of something.  Within the attack were peaks and valleys but it mostly lessened in intensity over time.  Symptoms were loss of coordination/balance and the following on right arm and leg: tingling, buzzing, weakness, plus curling of hand, fingers and toes.  I did not have strength to walk much for almost a month and somedays did not have the coordination nor strength to drive or even feed myself with right hand.

Tests included: Neck and Head MRI, Lyme, ANA, Sed Rate, B deficiency, thyroid, heavy metal, various evoked potentials, nerve conduction, some EMGs on right leg.  Everything was normal.
Final analysis was anxiety.  I took an antidepressant for awhile which didn't seem to help and seemed to make me moody so I stopped it.  I do believe I had some anxiety issues at the time (fast heart, gasping, insomnia) which I believe were secondary to the frightening physical symptoms I was experiencing.  These have since resolved.

Today I am better but seem to be left with some scars.  My right hand seems to want to stay in a more curled state if I'm not conscientiously straightening it.  My right hand and fingers do not have the same flexibility as the left hand and feels tight and stiff.  I have to do daily stretching exercises or find it rather painful to do something simple such as flexing my hand to lift myself out of a chair. Same with my right toes which will hurt with a lot of walking.  Quite frequently I also experience an almost cramping sensation on the outer backside muscle of my leg. I also have this "pegleg" rigid feeling at the top of my leg near my buttocks.

Sorry this is so long but felt I needed to give history.  My questions are: 1) Could anxiety produce long-lasting symptoms such as this?  2) Could it have been Guillain-Barr (sp?) and could it leave behind scars?  3) Would one of the tests have picked up GBS?  I don't remember any prior viral illness.  I did have several right sided tingling attacks prior to all this but they lasted hours, not days.  4) What are the odds that this could still be MS?  5) Should I be seeking followup for this stiffness and cramping which is mostly an annoying level of pain, not intolerable suffering?  

Thank you for this service and your time.
Kim

[Amy]

Dana   What was your diagnosis?  Was it MS?

[Dana]

My diagnosis came after my THIRD EMG.  The first two did not pick up the abnormalities.  My third EMG was three years after my symptoms began.  I can imagine why doctors assume anxiety causes our conditions, because living with these body sensations, and assuming a terrible neurological disease can make you VERY nervous. You are correct that a diagnosis has helped me not be so hypersensitive to my body sensations. However Istill feel this whole experience has left me more of an anxious person than I use to be.   These syndromes are real physical problems sometimes even inherited .   I wish I would have known three years ago that some of these symptoms could happen to people without it being either a serious disease or "all in your head".  I hope you get comfort from this.

[Judy - Follow-up question]

You expressed how I feel with your comments to Dana. Especially, the listening to the body too much. It takes over our lives. Much more so than if we had a diagnosis. I have RA. That is painful, but does not bother me much emotionally. Its the symptoms that cause neurological confusion that they can't tell me what they are (I've had tons of tests), that make me anxious, concerned and steal focus from the rest of my life. I have thought about just ignoring them, but am driven to find an answer. I will see my third neurologist shortly.

I hope you get an answer soon, I think the unknown is hardest. Hang in there and I will too.

Judy

[More Info I forgot to Add]

Dana, Thank you for the info.  Are there certain tests used to diagnose this or is it a diagnosis of exclusion?  Is it a real physical problem or are we hypersensitive to our bodies?  I have always doubted the anxiety diagnosis.  I feel more anxious AFTER the physical problems started because it causes me to "listen" to my body too much.  I wonder if I'll ever be normal again where I don't think about my bodily sensations all the time.  I hate it!  Anyway, just having a diagnosis must make you feel better.  Thanks again, Kim

[Dana]

KIM,  I have had the same symptoms you have described for about 3 years now.  I too went through all the same tests with normal results.  I thought I probably had anxiety or something even though It did not make sense.  I can see anxiety giving stomach aches, migraines but NOT cramping of muscle, buzzing sensations and weakness!  I finally went to Mayo Clinic and they told me I had a peripheral nerve hyperexcitability syndrome.(one doctor called it Isaacs syndrome).  There are some medicines to help with symptoms but no cure. I dont know if you have the same thing but it sounds very similar.  I understand there are other types of syndromes such as cramp fasciculation syndrome and etc.  I guess my point is- dont assume you are going crazy or have anxiety just because the doctors cannot find anything .  I hope you find an answer and find peace in knowing you are not alone.  There are many sufferers.  I suppose the good news is it is not life threatening.  God Bless!

[More Info I forgot to Add]

Sara:
No problems in posting at all.  I guess it was maybe around 9:15 or 9:30 EDT.  I'd just returned from dropping my daughter off at preschool and that starts at 9.
Best of luck,
Kim

[Amy]

Sara try posting at 9 a.m. EST.  That seems to be the best time.

[Sara]

Did you find it hard to post your question? What time did you post in what time zone if you don't mind me asking? I'm been trying to post for 6 months. Thanks-hope you can find some answers. God Bless.

[Gina]

Kim we could be twins, i've had the same types of things its been about over a year now that this began and it comes and goes but by far I have not had some huge remission, maybe one week I feel good then it comes back a week or so later, my right leg feels week and this is where it all began, my calfs ache and in the morning my sole of my effected legs foot hurts to touch the hard wood floor.  I've been really tired, yet I have passed all exams and testing.  I can still function but I notice it.  I stumble on occasion.  One thought that did enter my mind (i've been there like you thinking Guilliane barr, neuropathy etc) and fibromyalgia has  some of the same sypmtoms we describe.  Anyhow I wish you much luck and hang in there! by the way I was told Anxiety to as I was not fitting any particular disease.  who knows? maybe it is anxiety

[More Info I forgot to Add]

I forgot to mention one thing.  Contrary to what I've read about heat aggravating MS symptoms, heat doesn't affect me but extreme cold DOES seem to make the stiffness symptoms worse.  Not sure if this is meaningful info but thought I'd add it.

[CCF Neuro[P] MD, RPS]

Dear Kim:

Sorry that your experiencing such symptoms.  If you indeed did have GBS, the EMG should have picked it up as abnormal conduction block.  If you had MS, the MRI should have shown areas of demyelination.  This is not always true with the first attack but the persistence of symptoms that your experiencing there should be some MRI changes.  Since the sympotms have stayed around so long, a repeat MRI with CSF studies should clear the MS possibility up.  Since your symptoms have really not remitted, progressive MS is hardly not evident on MRI scans.  The normal lab finds are encouraging that most of the worrisome problems can be ruled out, but that doesn't help in trying to find the etiology of your symptoms.  Yes, anxiety can be one of the thoughts.  But maybe a further search might help.  Maybe a metabolic screen might pick up some abnormality that can be further searched out.  Some initial screens would be lactate, pyruvate, ammonia, CPK, and urine and serum amino acids, organic acids, and carnitine levels.

I hope you finds some treatable reason for your symptoms.

Sincerely,

CCF Neuro MD