Does anyone with MS think this sounds familiar?

Question

For about 3 years I have been experiencing severe facial pain, pressure in the left side of my head, occasional numbness in my arms, legs and face (and very occasional tremors), occasional stabbing pains in my arms and legs, occasional stiffness in my legs (mostly ankles - so I can barely walk), hard time concentrating, dropping things, tinitus, night sweats, increased urination (both these have been written off due to my age - now 40) and way more. I have been to several docs but no help (even the Mayo) or diagnosis. They either say stress (which I have almost none except this!) or a "nerve disorder" of unknown origin. My symptoms are worse in summer when hot and everything seems to be steadily getting worse with time. My MRI turned out normal however. Could this still be MS..any recommendations for docs to see in St.Paul/Mpls area?? I obviously do not want this to be MS but I NEED an answer...it is driving me crazy and my quality of life is suffering badly. Thanks for your help!

jensequitur · Answer

Welcome to the forum!  Feel free to post your story in a new thread - that way we can follow the thread a little better.

Something like internal tremors, with no other symptoms, makes it sound less like MS.  I would go ahead and talk to a neurologist - I always feel better when I know what's going on.

Leafs16 · Answer

I have been having internal tremors now for over 10 years since the age of 18 and have had some tests when I first got them and nothing really showed up so i've been trying to live with these tremors but they are really irritating and really affect my concentration,etc. and turn 30 next month. This restless feeling was first noticed at 18 right after I had smoked some mirijuana, I started sort of hillucinating and had trouble sleeping that night and the next day my world had changed from being very laid back to having trouble concentrating and also these internal tremors. There is also a pressure on the top of my spine it feels and get waves of pins and needles feeling in various parts of my body from time to time. There is sort of a vibrating feeling in my mind as well, I have gone on so long with this that I have not had any really bad sleeping problems for years, but now when I read about MS, Young adult Parkinson's etc. my anxiety has really shot through the roof and I am now waiting(not sure how long I have to wait for) to see a neurologist) I obviously do not want to hear bad news but would rather find out what this is so I can move on with my life, thanks ahead of time

KymL · Answer

Thanks to everyone for their input...all you can tell me helps!  I have been at my wits end on this and after 3 years of going to docs and getting nowhere, I am getting a bit frustrated.  Thnks again!

BOK2Bjan · Answer

I big ditto to Lulu!  Having your records is a huge help.  If you find another doctor in this quest, you'll want to be able to show what's already been done and what the results are.  It's good to have baselines too.  The MRI needs to be repeated to help with an MS diagnosis, so having a copy of that on a CD is great too.  Also, writing down your symptoms, durations, dates, etc., is very helpful.

I wish you well.  Blessings, Jan

Lulu54 · Answer

Hi Kym,
Welcome to our family - I hope you will find the information and company helpful.  One thing that I think I'm noticing here is you don't have complete copies of all of your medical records.  Please do yourself a favor and gather all of those - including all your lab results, test results and everything else you have undergone  - into a file that you can keep handy for reference.

There is no standard limit on how long these records are kept by doctors and labs and you may need them further down the road and discover that they have been destroyed.  

Welcome again and I hope we see you here often
Lulu

KymL · Answer

Thank you so much for your suggestions!!!  Anything helps and I will try what you said.  Thanks and good luck to you too!
Kym  :-)

michiganCMA · Answer

sorry about my spelling errors, my fingers do not coordinate with what my brain wants most of the time.

michiganCMA · Answer

I might think of asking about stoppikng the gabbapentin, because that gave me all kinds of problems and a lot of what you describe seem similar to what I am personally going through with my battle. They are pretty sure I have MS but it is not confirmed yet. 

If these things have been happening for a  year tell your doctor wha tyou think and feel and ask about other testing such as a spinal tap to check for cerebral inflamation markers, and oligodentrie bands. Accompanied with a new brain MRI w/and w/o contrast if it has been more than six months since previous exam. And finally ask about an EEG..
I"m not saying you do or don't haven anything, just helping you try to get the most from your doctors visit. 

Good luck..

PS 

It helps to right things down or type them up with how you feel, your questions and organize them to bring to your doctors office. This way you wont forget any important information regarding your symptoms or the testing that you feel might benefit you.

Mind you this is JUST advice I am no dotor

KymL · Answer

No spinal taps and I beleive they tested for Lupus and it was negative - they have tested for tons of stuff!  I also beleive I had an MRI with contrast and another without.  Thanks!

michiganCMA · Answer

any spinal taps performed? or testing for lupus possibly?

and was the MRI a contrast and with out contrast?

KymL · Answer

I do have some less impaired times.  I will have a really bad outbreak of symptoms for about a week or two and then maybe a couple of months in between with much less severe symptoms but I do have some syptoms in that time with a few near perfect days.  The tremors I have had are in my arms when in a bad outbreak and in my face right now (I am in a "remission" of sorts with just irritating syptoms like alot of stiffness in limbs and fatigue).  When I have a severe outbreak is when I get the severe face pain and pressure that can last days and is so bad I cannot function at all.  I also get the arm tremors then as well and the severe limb pain.  before, during and after this period, I also get the intermitant numbness in my arms, legs and face - sometimes quick spells for just a few minutes and sometimes hours.  I seem to have the cognitive problems (losing train of thought in mid sentance, forgetfullness, confused speech) all the time.  I also drop things alot.
I have had all kinds of tests.  I can't even name them all but the only one to test for MS was the MRI.  They have not done a spinal or anything.  I had tests to check my heart and the nerve responses in my left side, ect. Everything has turned out ok so far.  I had a nerve block in my head that helped the pressure but they also did one in my neck that started the worst outbreak ever!  Ugg!  It was horrible...so no more nerve blocks.  I am on Gabapentin 900mp 3x a day and that has helped the pressure some as well as descreased the frequency of the face pain and major outbreaks.
I hope this additional info helped...let me know if you have anymore info!!!!  Thanks!
Kym

essdipity · Answer

Hi, Kym, and welcome.

What you describe can be symptoms of MS, but also of lots of other disorders too. Have you had a distinct pattern of symptoms followed by symptom-free times? You don't say what tests you've had other than an MRI, which I assume was done with MS protocol if Mayo was involved.

It would be most unlike MS to have all of these happening fleetingly. I suggest you spend some time reading our Health Pages (see upper right of screen). This will answer a lot of your questions and get you thinking about a lot of issues that may be related.

Come back and let us know what we might help clarify.

ess

sllowe · Answer

Hi there, 

Thanks for joining us.  Think it's going to be important to break this down into palatable chunks for us so we can provide you with more thorough responses. Night sweats sounds more hormonal to me, but none the less, I'm sorry for what you are going through.

I think a timeline is in order if you've not already got one and you can start as far back as three years ago w/the facial pain.   

For example (but break out the time): 
2007: severe facial pain, numbness 
         pressure in the left side of my head 
         occasional numbness in my arms, legs 
         very occasional tremors (where at?) 
         occasional stabbing pains in my arms and legs, 
         occasional stiffness in my legs mostly ankles 
Year (add the testing) 

Hope this helps! See you around