WHY CANT THEY DIAGNOSE MS 4 ME?

[MrsAristotle]

Some of you will already know a bit about my journey.

It will be 5 years in September that I really started.

I have just had loads of blood tests for anything and everything so keeping fingers crossed perhaps one will come up positive that mimics MS.

Now in the last 2 weeks I paid for more of my medical records and I have found several letters which show I had lesions even with subtle changes and it was thought demylinating........on my T1.  Then a letter in 2009 that again confirmed they have found a lesion on my C5/C6. Please note at the moment my hands are comprimised and painful and T1 and C5 will affect the hands..................

I found a letter that said if they at least found o bands in my LP he (the neuro) would feel comfortable offering me I.V. steroids.  IN MY LAST APPOINTMENT he offered me I.V. STERIODS so they must have found o bands in my LP (WELLI know they did as he said there were lots of o bands, but unfortunately inflammation in my blood test ..... but he agreed it could have been a red herring as I was feeling unwell at the time or could have another illness going on).

So what have we got.

2000 ... Optical Nueritis in BOTH eyes confirmed.
2008 ... Lesion  on my T1 with subtle changes
2009.... Lesion easily seen on my C5/C6
2010...  LP with O Bands

2000 - 2011
Paraesthesia
Trigeminal Neuralgia
Vertigo
Balance problems
bladder & bowel problems (Fecal Incontinence)
Myclonus
Uhthoff's Symptom
Gastroesophageal Reflux
Neuropathic and Neurogenic pain
Fatique

So with all that why cant I get a diagnosis of the only disease that makes sense?

I know if there had been no inflammation in the blood test alongside the LP I would have, its that blood test that ruined it for me.

I just want to be well ... I know if it is MS I wont get better but at least I know what i am fighting.

Goodness I mean it wont cost the NHS anymore lol.

I read about Montel Williams journey with MS, and he started the same as me with ON, and then for 19 YEARS he had clusters of things happening before he got a diagnoses.... After my ON I had a cluster of things happen to me...

NINETEEN YEARS and he has money so maybe there is hope for me yet.

Why cant the neuro at least say to me well its probably MS......because it doesnt look as though it is reuhmatlogical as the reumy confirmed on Monday to me after my first appointment that she felt 100 percent it was nerve related.

I just dont get it. I know I am nearly 60 now I wonder if i was younger if i would have been taken more seriously.

Its the pain now that is getting to me from my shins to my feet and my hands.  I just want peace.

I dont even know why I am writing this today, I just feel a bit deflated I suppose and trying not to get depressed.

Sorry guys for moaning but I just dont get it.  Mariax

[cainer]

gosh, they taking care of symptoms?  id get a little-lol -a lot upset if i was you!
  alot of us have had a while before they told us- they do want to be sure- you might get a diff-better dr!!   hugs  tick

[sllowe]

Hi Mrs. A!!!

I sure don't know, Mrs. A. Has your neuro give you a list of things that he/she absolutely know you don't have? Surely there must be 2 handfuls of "nots."

Are you able to pull from your paperwork in hand a list of have nots and post the list here? And, have it at the ready when you go to the doc?

I wish this journey were short, I wish your hands were not compromised. Is your fight still there? Do tell.....

Wanting to help you!
-Shell

[HVAC]

Mariax,
  You have been on this road a long time. I am not sure why you would not feel frustrated and depressed. Someday these long years of  lengthy diagnosing will be considered crazy by Neurologists.

Alex

[RazCarver]

Mariax, I didn't hear a moan. I hear frustration. It is understandable too. I've been in limboland for 5 years also. Hopefully we won't have to wait 19 years.

Maybe willingness on neuro's part is a step closer to diagnosis? I feel it is at lest validation of a sort that my neuro cares and doesn't think I'm crazy.  I know doctors have to be careful in what they say, but yes it would be nice to hear what they really think sometimes.

Don't want MS but want a definitive diagnosis of what is going on and help along the way in dealing with it.

I think that is why this fourm is here, so we can help lift each other up a long this path.
Thank you for helping me tonight and I hope you get answers soon.

Raz