New to the forum and confused

[ArlanaK]

Hi there,

I am new here and in mid diagnosis.  My new neurologist (#3) says she is fairly certain it is MS.  She ordered evoked potentials, another MRI and will do a lumbar puncture if that comes back inconclusive.  I am not sure how I feel right now.  My husband wants it to be a pinched nerve and stay with the fibro diagnosis.  I have been on this merry go round for a long time.

1st episode after my Hawaii honeymoon - complete exhaustion, feel fluish every afternoon, weak muscles (used to do aerobics etc) then would break into a sweat blow drying my hair, like it would wear my arm out to hold it up.  Tripping, dropping stuff, memory problems, foggy thinking, daily headaches.  This was way back in 1993.  Saw several specialists had CT Scan and other tests (no MRI) and ended up with a fibro diagnosis.  Got better, went back to work for 6 months, relapsed, got better, ..

Years go by they find a borderline thyroid disorder - Hashimotos.  Get medicated, do physio on and off for jaw issues, neck spasms, headaches, still fatigued but now all blamed on thyroid.  Have kids and then the weird tingling, buzzing, burning starts.  End up in the ER as left side goes completely numb - sent to neuro #1 - he says atypical migraine with the numbness being my aura.  Thought it strange because my headache wasn't any worse than the usual.  Now when this happens (usually a few days every few months) I take migraine meds but they don't really do much.

More years more doctors - just about every "ologist" there is.  The about 3 years ago neuro #2 says maybe MS and does MRI.  It comes back with "hyperintensities not typical for MS" so he says not MS and refuses to do anymore tests.  Says he can't help me.  After that I got depressed and carried on now with numerous symptoms - urinary symptoms, headaches, stiff sore muscles, difficulty walking, limited motion and no flexibility, grasp on hands gets worse, fatigue so bad I actually fall asleep sitting up and once while driving!  trouble breathing, ringing in ears, blurry vision and eye pain, IBS...I didn't see the point of going to the doctor.  Finally my husband made me go with him.

I was referred to the rapid access clinic in one of our better hospitals and had a team of docs investigating.  Lupus - neg ANA, and I can't remember all the others only to get back to fibro.  But my case manager doc started to send me one by one to different specialist - urologist, gastro, internist.  He started me on cymbalta and elavil and I was able to function somewhat again.

Then before Christmas I had a bad spell as I call it.  had to go off work.  Tremors in my hands, barely able to walk, dropping stuff, blurry vision, urinary problems, cognitive problems, slurred speech, muscle spasms...  He decides I need to see a neurologist (#3) and now we are back on the MS train.  She has ordered my old MRI to compare to the one I had last week.  People are saying if it is MS wouldn't they have figured it out by now?  I mean I have seen at least 12 specialists.  For the longest time I just wanted an answer, but now I am not so sure what that will mean for my life and my family.  Could they really have missed it for so long?

[supermum_ms]

Unfortunately yes its possible for MS to get overlooked for decades, if it's not looked for, its pretty hard to get dxed correctly. You end up with a lot of unexplained or don't quite fit dx's, until MS is flashing like a neon sign screaming look for MS and you'll see its here and here and here and here and.........here.  

I understand you have concerns for your self and family, if it does turn out to be MS. If it is, you could try to think of your self as being a veteran and not a newbie to MS, its the naming of it that would be new, not what you've been living with, which has been happening for over a decade.

I believe educating your self and family on what MS is all about, what DMD's and other medication are available now, connecting with others etc will greatly assist and lift a lot of potential concerns when facing MS being the cause of their health issues. To me knowledge can be cathartic, and it's been helpful to my piece of mind to learn and understand the why's and what can be done etc

You know your self better than most, if you think it would help rather than concern you more, you could read through our health pages found to the right of your screen or visit reputable MS organisations and read up on your sx's there.

Please let us know how you get on, with your appointment with neuro no 3 and if you have any questions please dont hesitate to ask.

Cheers..........JJ  

[Lulu54]

Welcome.  If I remember correctly, we have a couple people here who took 15-20 years to find a diagnosis - MS.  That is unusual, but still quite possible.

So much of what you list here sounds neurological and the doctors are perplexed too.  EXCEPT for the one who dismissed you. ....I'm glad that doc isn't in the picture for you any more.

I hope this next round of visits with Neuro #3 yields an answer.  Fingers crossed for you!
Laura