Dealing with fear and frustration

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Regular Member

Date Joined May 2009
Total Posts : 25
   Posted 5/27/2009 8:33 AM (GMT -7)   
Over the last 2 years, I've seen 5 neurologists, including one who is specifically an MS neurologist.  She said, "You do not have MS."  I cried.
In the year since I saw her, I've had a repeat MRI with 9 new lesions from the previous year.  I have increased symptoms, fatigue that I just battle because I can't take naps when I can no longer hold my head up.
I'm seeing a new neuro who has now ordered BAER, VEPs, lumbar puncture.
I saw an orthopaedic doc for a knee injury and it happens that his wife has MS and he tells me that just because the MS neuro said it's not MS does not mean I do not have MS.  He feels my symptoms are very typical of MS.
I was at a picnic with my family on Monday and tried to throw a bean bag.  I could get the arm swing going, but I was unable to initiate releasing the bag to actually throw it, instead would just let go and have it fall a foot in front of me.  Made for lots of laughs at the family and I laughed along with them joking about my poor throwing skills.  I didn't tell them that I couldn't throw.  I tried to throw a pen later just to see if I could, I couldn't.  I'm no longer able to pick up pills from a hard surface because my pincer grasp shakes and I'm never sure if I have the pills cause my feeling on the right is greatly decreased.
I live alone.  I'm self-supporting.  I work with my hands.
I'm repeatedly told to stop borrowing trouble, but I also have to face a reality I'm not sure of.  What happens if I can't work?  What happens if I can't find anyone who says YES this is MS and this is what we're going to do about it?  I've had relapsing/remitting symptoms since 2000 but since a visit to Florida in 2007 where my symptoms flared big time and have never totally gone away again, I've dealt with neuros telling me no that's not MS; yet urologist says my urinary symptoms are likely MS; my ortho says the lack of feeling I'm having is not related to a knee injury but sounds like MS; my ENT tells me my inability to initiate the swallowing reflex is likely MS;
I'm just scared of what this all means and frustrated because I don't really care what the medical community calls it.... I just need to know how to live with it without being petrified.... btw, I'm 52 and because I was past 40, many docs are telling me I can't develop MS.

Post Edited (GrizLeeB) : 5/28/2009 7:13:11 AM (GMT-6)

Forum Moderator

Date Joined Jan 2007
Total Posts : 3550
   Posted 5/27/2009 4:58 PM (GMT -7)   
I have heard time and time again how hard it is to get a diagnosis.  I have not heard your story before though.  You have NINE + lesions and no diagnosis.  Wow.  What did the neuro attribute the lesions to? 
I am a bit confused.  Did the new neuro "not" order or "now" order VEP, BAER, and a lumbar puncture?  I am leaning towards the "now". 
Hang in there.  We have lots of people in limbo here. 
Gretchen       co-moderator MS board       diagnosed with MS July 2006
I have no lesions on my soul and so I will live with no limits.

Regular Member

Date Joined Mar 2009
Total Posts : 135
   Posted 5/27/2009 9:09 PM (GMT -7)   
Wow, Yes, hang in there..The people here are great ! I just got my MRI results showing suspiciou,s lesions, so Now I'll have to have a lumbar punture next week. I have been having memory problems,a foot drop that came on suddenly and disappeared gradually over a few months. I new I needed to see a neuro.,when my rheumatologist dx'd the foot drop. I'm very scared about things too. I was fired from my new job after only being there for about 60 days ! They said I "was not meeting the job requirements". I was stressed at the new job,trying to not let anyone know that I have R.A. ,F.M. and I'm Menopausal. Do you take an antidepressant ? Not that I wish any more pills for you. I'm researching selling for an up and coming gourmet candle company with other fine products. Do you have trouble with your knees giving out and your fingers not working right for fine hand/finger movements ? I often mistype letters in reverse and forget how to spell some words !!

Regular Member

Date Joined May 2009
Total Posts : 25
   Posted 5/28/2009 6:16 AM (GMT -7)   
Thank you for your responses. Yes, Gretchen, NOW the neuro has ordered VEPs, BAERs. I think this woman is going to be my neuro that at least has listened and is not looking at me as if I've lost my mind.

Spicey, I'm a mental health therapist but had to leave that in 2005 because I was breaking out in hives constantly and it began to freak out clients (ya think?). Thankfully, my first career was in medical transcription which I was able to fall back on and do from home. This job is a lot of rote memory for me, sort of bypassing the "think tank", but I'm finding now I have to think which is creating issues for me.

I appreciate the support.

Thanks so much.
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