It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Multiple Sclerosis Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 04-19-2010, 01:29 PM   #1
Senior Member
(female)
 
Join Date: May 2006
Location: england uk
Posts: 141
topsy123 HB User
Your advice is worth a lot...

I have been diagnosed with Fibromyalgia, its not pleasant. I cannot help thinking though that this is not the full picture. Don't misunderstand me, I don't want anything else, I just have a hunch.
I have many symptoms, and have had many tests done, mostly negative. One brainstem lesion and positive lumbar puncture.
Anyway, I am now being seen by a Rheumatologist who seems to be listening, but is he looking at the bigger picture, I am not sure. He had decided to give me Tramadol for the pain and Gabopentin. I question the Gabopentin, as it is given for Epilepsy and I don't have Epilepsy. I have muscle spasms, but not fits.
This last three months has become pretty unbearable with the level of pain. It came on like a bolt out of the blue. I felt my symptoms were bad enough, ie, muscle spasms, brain fog, electric shock feelings, nausea, muscle cramps, slurred speech (at times) and so on...........However, I sem to have suddenly gone down like a lead balloon. The pain is mainly in my pelvis region and lower back, travelling down my legs. Also my right foot has become quite painful to walk on. I have resorted to using crutches. My whole torso locks at times and I am stuck or feel frozen with the pain. If I put my head down I get a hell of a jolt like an electric shock. My mobility has become appalling.
My GP has become very much of the attitude, ah well, you only have fibro, get on with it and take the meds.
I seem to be stuck. I have asked for another lumbar puncture, certainly not because I enjoy them, but because even though it was positive, they said it was just an infection, but what infection they don't know. I understand that you need more than one lesion to even consider it being MS, but the neuro I had spoke to me like I was an idiot and made me feel like I was wasting his time.
I almost feel that telling me its Fibro is a copn out, because they don't really no.
what do I do?.....I really don't want to hack my GP off but I feel I am not being told everything or at least followed up. They keep saying, well you had every test so we don't kneed to do anymore. My last MRI was two years ago, I feel another one is due.
Please try to give me some solid advice and suggestions here, I honestly do not know where to go or what to do, and If I do come across as being a hypochondriac or timewaster based on the info I have written, then please tell me, I will read and listen.

 
Sponsors Lightbulb
   
Old 04-19-2010, 07:20 PM   #2
Facilitator
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 8,756
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Your advice is worth a lot...

HI Topsy.
You do seem to be in a pickle, dont you? Sorry to hear of all the discomfort. Fibro is a catch all phrase, which has begun to be noticed in the medical society as a disease; however it simply means NERVE pain. Gabopentin is the generic for Neurontin, which is often given for nerve pain- its not always used for epilepsy. Most MSers do not get any relief from Gabopentin, because our nerve damage is differnt then those with Fibro- so it might be worth trying it just to see if it does help you. Warning though, do not stop it abruptly, make sure you wean off of it over a few weeks, otherwise it can cause seizures!

Youre seeing a Rheumy, which is good. Can you make an appt with a Neuro ? WIll he refer you to one? Youre right, the MRi is long overdue. A MRI can change from week to week...what was only one lesion 2 years ago, could very well be more by now. You wont know if they dont do the test. As for the LP, its not going to help you find out about MS. If it makes you feel better to rule out other infections, you should do it, but overall, its not a conclusive test, except to rule out meningitis or PML. Your symtoms do not overtly sound like MS; however they do ring true of LYmes...has that been ruled out and has it been ruled out more then once? A simple western blot blood test is not accurate for Lymes- you should read up on it on Healthboards Lyme Board.

I hope this helps alittle...and that you find some answers.
Nikki
__________________
RRMS- dx 05

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Really down and would appreciate some advice gf419 Relationship Health 61 03-01-2010 07:39 AM
how did you get your Dr to take you seriously? sickinFL Chronic Pain 11 03-06-2009 03:00 PM
Tmj friends, i need advice more than i have ever needed your advice.. help temera2 TMJ Disorder -TemporoMandibular Joint 12 09-05-2008 09:36 PM
i need advice Rena87 Multiple Sclerosis 4 09-04-2008 05:20 AM
Post Penile Implant advice? DRAS Sexual Dysfunction Treatment 26 05-17-2008 07:25 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



MSJayhawk (998), MSNik (526), Snoopy61 (58), J-one (13), Whimpurr (13), shahila (12), JodiH (11), MS22 (11), KingBaxter (10), LasVegasgirl (8)

Site Wide Totals

teteri66 (1180), MSJayhawk (1004), Apollo123 (905), Titchou (848), janewhite1 (823), Gabriel (759), ladybud (754), midwest1 (669), sammy64 (668), BlueSkies14 (610)



All times are GMT -7. The time now is 09:11 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!