Whose diagnosis to choose?

[jadeglee]

Hi. I was diagnosed with MS in 2004 and went to various different non MS specialists for years and they all continued to treat me for MS. I even saw Dr. Leist at Jefferson. In 2011, I saw a different MS specialist and he gave me a second spinal tap, MRIs, vitamin D test, ocular exams and blood work. He decided that there is a 95% chance I don't have MS. He took me off Copaxone. How do I decide who to believe? Do I believe the doctors who went along with my original diagnosis or do I believe the doctor who said I probably don't have MS? Which doctor should I go to? I'd appreciate any advice. Thanks!

[misslux]

There is a large piece missing.

Why does the 2011 doctor think it isn't MS and what does he think it is? What was the follow up plan?

[Marco]

I was "undiagnosed" at one point, but that turned out to be the errant opinion. Obviously, the "not MS" opinion is preferred, but why second guess the diagnosis after a decade? We can't tell you which doctor(s) is wrong, but why were you seen in the first place? What symptoms did/do you have? What criteria was used for the initial diagnosis? What criteria was used to undiagnose you? Did you take any other medications besides Copaxone and have you continued them?

Sorry, for the questions, but we just have enough information to give you more guidance.

[jadeglee]

Thanks for your replies. Sorry for the scanty information. I wasn't sure what to include.

My original dx was made based on three bands in my spinal tap, loss of strength in my right arm, the "ms hug" (or was it costochondritis?), nystagmus, and blurred vision. The 2011 doctor reversed my dx based on only one legion ever being evidenced, a negative spinal tap (I had a second one) and the fact that I had no problem with gait, speech, vision and no serious problem with balance. My main problem was with pain and fatigue. He said he didn't know what I had but that it wasn't MS. I just adapted the easiest dx of fibromyalgia.

I stopped all MS drug therapy and was supposed to go back for yearly MRIs. I failed to do those MRIs. I am scheduled for one later this month but am not sure which doctor to have evaluate it.

I have no further "clinical" evidence of MS except for one severe cognitive problem, fatigue, and hypertropia. But I am now on a low fat, whole foods, vegan diet. My health has improved greatly on this diet. No more pain even.

I don't know if that helps any further. Let me know what else I can answer. Thanks so much for your help!!!

[SNOOPY]

Hello jadeglee and welcome to MSWorld.

What a difficult situation you find yourself in

I do know that it is possible to be diagnosed, then undiagnosed. I have seen this come up quite a few times on MS forums. Some of those who were undiagnosed were misdiagnosed with MS and some had the MS diagnosis reinstated.

My original dx was made based on three bands in my spinal tap, loss of strength in my right arm, the "ms hug" (or was it costochondritis?), nystagmus, and blurred vision.

The 2011 doctor reversed my dx based on only one legion ever being evidenced, a negative spinal tap (I had a second one) and the fact that I had no problem with gait, speech, vision and no serious problem with balance.

What has my interest is the Lumbar Puncture (spinal tap) results. You had 3-obands at the time of diagnosis and your second Lumbar Puncture(LP) showed 0.

At the time of my diagnosis of MS I had 5 o-bands. My neuro stated that once you have o-bands you will always show o-bands. I have never had another LP to see if this statement is correct.

I do know that the LP is used in the diagnostic process of different conditions/diseases. I don't know if o-bands would disappear if they are caused by something other than MS.

Best wishes, jadeglee.

[Cat Mom]

That's just downright terrifying! I fully understand your fear as if it is MS, and you're not taking a DMD, it will probably worsen. On the other hand, who the heck wouldn't be just fine being undiagnosed.

Is it possible to have your MRI interpreted by your new doc and maybe your GP? Or take it and get a second opinion once it's been read?

Sorry for not giving sound advice, I live in Canada so not familiar with your healthcare system. Please be sure to keep us posted. I wish you luck and a clear MRI.

Jen

[Mshelle]

Do you have a neurologist in you area that only sees MS patients or is accredited? That's where I would go. If your PCP's office schedules the appointment you can get in quicker.

[jadeglee]

I have decided that since I received a positive diagnosis from two nationally know MS specialists (Dr. Giesser at UCLA and Dr. Leist at Jefferson) that I would accept this diagnosis. I have made an appointment at Penn's MS Center with Dr. Pruitt for April 23rd. They seem to be an advanced diagnostic center and they seem to offer good treatment. I am excited to get back on meds. Thanks for everyone's input!

[misslux]

Are you still going in for your MRIs?

[misslux]

Is it possible to have your MRI interpreted by your new doc and maybe your GP? Or take it and get a second opinion once it's been read?

Yes, you can get the CDs and radiology reports and take them with you. I brought all of mine back here from the US.

(as an aside, you can get copies here too)

[jadeglee]

I haven't had an MRI since 2011. Time got away from me and I didn't see the need. I had stopped believing the MS diagnosis because I had so few symptoms. But I do have all my old CDs. Except for my very first MRI as they didn't give out CDs for that one. And I just went through my paperwork and it ended up I actually had two T2 lesions, not one like I had originally thought. Also, I discovered I don't have the results of my second LP so I don't really know if they we're clean. That doctor would have said they were clean even if I still had three o bands because he said I needed four to have MS. I don't think that's true, I think the correct number is two. Right? Anyway, I'm once again so happy to have an explanation for all the problems I thought were just a part of life.