Your thoughts on my dx journey?

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

Your thoughts on my dx journey?

Postby bradlandreth » Tue Feb 28, 2012 11:25 am

37 year old male. Unrelated but I had a major heart attack last June due to blockage.

Later around October I was admitted to the hospital and had a brain, cervical and thoracic MRIs where the neuro found lesions on the spine and brain. The brain lesions were consistent with M.S. lesions in regard to shape and location.

My mother was dx about 25 years ago and given this and the MRI, my neurologist determined me "possible" for M.S.

I had evoked potentials performed. VEP were consistent with optic neuritis. AEP was fine. SEP was consistent with bilateral posterior tibial neuropathies.

After the evoked potentials, neuro determined me to be "probable" for M.S.

Here's the problem and why my anxiety level is so high. I had a drug coated stent inserted when I had the heart attack. I have to take blood thinners for another four months with no chance of stopping them early. (My heart attack was in my left anterior descending artery - widowmaker - which, if the stent collapses or clogs, I will likely die.) This means that I can't have a lumbar punch performed for at least another 4-1/2 months when I can come off of the blood thinner.

For what it is worth, over the years I have had sciatica problems and other nerve issues for which I never visited more than my GP. Recently my groin/thigh area, lower back and down to my left toes hurt so bad that I could not walk for several days.

So you can probably tell from my post I am anxious to have the lumbar puncture performed to either confirm or squash the M.S. theory.

What are your thoughts given the information that I have provided. Family history, MRI, evoked potentials, etc? Do you think that there is a high chance that the CSF is going to support the M.S. diagnosis?

Thanks, I am really struggling with whether or not to start another M.S. drug. I tried Copaxone and could not handle the injection site side effects. Now I just feel like I am in limbo until I can have further test done. On one hand I don't want to try another drug because I may just be injecting myself needlessly. On the other hand, I may be losing 4-1/2 months of prevention.

Any feedback would be greatly appreciated.

Brad
bradlandreth
Newbie
 
Posts: 2
Joined: Tue Feb 28, 2012 11:17 am

Advertisement

Re: Your thoughts on my dx journey?

Postby daverestonvirginia » Tue Feb 28, 2012 12:31 pm

Brad, sorry to hear what you are going through. I believe when someone is first dx it is the hardest time to make it through. When I read your post I was surprised with your concern about the lumbar punch. I guess I am still surprised they are still doing them. I was dx over six years ago based on an MRI and have never had a lumbar punch. I guess I thought if the MRI implies MS and you have some other sypmtoms that is all they need to give you a dx. From what I have read through the years if they think you have MS from the MRI it almost always ends up that you do. My advice would be take your time figure out what you want to do to fight the ms, meds, diet, vitamins. A couple months is not ging to mean much in the big picture.
User avatar
daverestonvirginia
Family Elder
 
Posts: 182
Joined: Mon Apr 09, 2007 2:00 pm
Location: Reston, Virginia

Re: Your thoughts on my dx journey?

Postby cheerleader » Tue Feb 28, 2012 1:53 pm

Brad--
Dave gave you great advice. The lumbar puncture will give more info, but people can have banding in the CSF if they've had strokes, or cerebrovascular disease. MS isn't the only disease to show the banding. And another couple of months isn't going to change much. You have bigger issues to deal with right now.
Many people with MS have found a connection with their disease and their vascular systems, called CCSVI. My husband is on a diet/exercise program written by a heart specialist, Dr. John Cooke, called The Cardiovascular Cure.
http://www.amazon.com/Cardiovascular-Cu ... 0767908813
Right now, getting into a heart healthy program would probably help you the most on all fronts. My husband has stents, too...and this low fat, high antioxidant lifestyle and medication has helped keep him MS progression free, now 5 years since his diagnosis.

Hope you have better days ahead. Keep us posted,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5073
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Re: Your thoughts on my dx journey?

Postby patientx » Tue Feb 28, 2012 2:15 pm

Brad,

Many doctors are getting away from using an LP to diagnose MS, since it may not show anything in about 15% of cases. I never had one, and a number of neurologists I asked said it wasn't necessary. (Of course, sometimes I do wonder if this additional piece of information would have been nice to have.)

If you want the perspective of someone else that has had a heart attack and also a diagnosis of MS, you might want to check out this board:
http://www.medhelp.org/forums/Multiple- ... is/show/41

One of the forum leaders there, who posts under the name Lulu, has had both.
User avatar
patientx
Family Elder
 
Posts: 1068
Joined: Wed Sep 10, 2008 2:00 pm

Re: Your thoughts on my dx journey?

Postby MarkLavelle » Tue Feb 28, 2012 3:11 pm

bradlandreth wrote:For what it is worth, over the years I have had sciatica problems and other nerve issues for which I never visited more than my GP. Recently my groin/thigh area, lower back and down to my left toes hurt so bad that I could not walk for several days.
While you may or may not have MS (and LP shouldn't necessarily be required for a dx), the sciatica and other sx you've listed sound very much like the problems I've had with a herniated disc and a cyst in my spinal column at L4 & L5. I'd recommend seeing a back doctor, especially if the reports from your spinal MRIs have anything to say about your discs or stenosis.

My back doc is a physiatrist (http://www.aapmr.org/patients/aboutpmr/ ... trist.aspx) that I originally went to for sciatica 4-5 years ago, and then 2 years ago when it started acting up again. He was the one who realized that not all my sx were mechanical and sent me to a neuro, which eventually led to my MS dx...

RRMS dx 3/3/11; Copaxone since 12/1/11
MarkLavelle
Family Elder
 
Posts: 178
Joined: Sat Dec 17, 2011 8:08 pm
Location: San Francisco Bay area

Re: Your thoughts on my dx journey?

Postby Taurus » Tue Feb 28, 2012 11:23 pm

Brad
It looks like you do not have any symptoms related to MS right now which is a good news. Please see that as per my neuro, MS cannot be diagnosed on VEP and MRIs alone or even on one single episode of attack. The lesions which show on MRI show demylination which could be because of so many reasons including Vit B12 Deficiency, Lyme etc. In my case, I had a single episode in December 2008 with MRI and VEP consistent with MS. My doc started with some symptomatic treatment but refused to start MS drugs (A,B,C).
I suggest please consult your doc and get yourself properly diagnosed first through B12, Vit D3 and other levels checked. If u suspect Lyme, do tell it to your doc. Don't jump to these crab medicines, these will disappoint you in the longer run.
I personally take LDN with great success and have been treated for CCSVI.
Wish u good luck and best of health
Raza
Pakistan
User avatar
Taurus
Family Elder
 
Posts: 119
Joined: Sat May 22, 2010 2:00 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