If I werent so happy I would beat my head against the wall

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

If I werent so happy I would beat my head against the wall

Postby tara97 » Thu Jul 16, 2009 7:21 pm

so my MRI came back normal. the previous lesion and syrinx didnt even show. If I werent so happy I would beat my head against the wall in frustration. No MS means no MS this time after 5 years. I am definitely going to go the B12 route I am so happy I found that on this sight. but I am puzzled. I had guillian barre syndrome 7 years ago and one year later I had weakness, numbness and pain no elevated protiens showed on the LP. It went away after 2 weeks. Another year later same symptoms came up only so severe that I had to climb up the stairs on my hands and knees. I had extreme burning and charle horse pain radiated down my neck into my arms and legs. they looked at MS and the lesion I had did not contrast. every time I saw a neurologist ( one would refer me to another of different expertise 4 in all) they went back to MS no one mentioned CIDP or to get an EMG. After 6 months of this, the slightest efforts caused such fatigue and tremors. because of my GBS background I mentioned CIDP and they scoffed. the symptoms mysteriously went away and only just came back this may. the bottoms of my feet go numb, my wrists only move in jerking shaking motions. I have what I call phantom voids of sensation here and there. I am so weak I cant even fold clothes and brush my hair with out my shoulders getting fatigue. heat makes my legs heavier. when I wake up I am so stiff and as my blood starts flowing I get shakey. my arms and legs keep going falling asleep. so this time the doc did an EMG and right after, walked out of the room and handed me a w/wo MRI referal so I took that as a normal EMG, lets move onto the CNS. he said we are following MS protocol now. I am not crazy I dont want to be sick and if B12 shots set me back to normal I am willing to move on and be happy and go on my way. but if not I dont know what to do. I have been bounced from MS specialist to neurosurgen to neuro muscular sub spec. for 5 years around and around I go. since the GBS I have had 4 MRIs, 4LPs, 2 CTs, 1 VEP, 1 EMG and blood tests. I could take the normal tests as an answer but I want my body back. there is nothing normal about the way I feel. I also feel like I have lost credibility. i am constantly refraining from complaining but I really want to say leave me alone today I dont feel well. I feel like I cant say that because I have some phantom ailment that clinically doesnt exist. Mind you I have such a frame of reference for the severety of autoimmune neurologigal problems as I had been rendered completely but temporarily paralysed from the GBS. I am very happy to have a normal MRI and I dont take that for granted for a second. thank you for the eyes and ears I wont take up ur time . I wish each of you good health and happiness.
User avatar
tara97
Family Elder
 
Posts: 161
Joined: Sun May 24, 2009 2:00 pm
Location: Henderson

Advertisement

If I weren't so happy I would beat my head against the wall

Postby NHE » Fri Jul 17, 2009 12:58 am

I'm sorry to hear that you're going through such a difficult time right now. I can't imagine having 4 LPs. The week long excruciating headache I had after my single LP was enough. Have you ever had blood tests to look at your vitamin and mineral levels?

NHE
User avatar
NHE
Volunteer Moderator
 
Posts: 3400
Joined: Sat Nov 20, 2004 3:00 pm


Return to General Discussion

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service