MS diagnosis changed after 7 yrs. ???
 

Hi, I am new to the site and I just hope someone can give me some advice.

I am female, 47 was diagnosis initially 7 yrs ago with probable MS. I was refered to a Professor of neurology who confirmed that I clinically presented with MS and my neurologist was recommended to commence me on IV cortisone.

I have been on interferons for the past 4 yrs and had to still have IV cortisone for 5 days every 3 or 4 months. I lost my career, my life, my health and much more.

I had to change my neuro as my neuro got ill. This neuro now disputes my diagnosis. He says he cannot see the Dawsons fingers they make mention of on my scan. At first he told me he thought that I had spastic paralytic condition but then he changed my diagnosis to adult onset spina bifida. The excruciating pain in my legs and feet are due to peripheral neuropathy.

He cannot explain the fatigue. He cannot explain my jerking, he cannot explain my dropped foot, he cannot explain my memory problems.
I want to believe I don't have MS but I just don't know.

Any help would be appreciated
Des

As I tell many others, if you feel that your MD is being dimissive, or treating you unfairly PLEASE, leave! seek a new MD. This is a very frustrating disease, and even the best, most well trained neuro's dont have a clue as to why MS does some of the things it does. its horrible to feel abandoned, dismissed, and misunderstood.

Is there an MS clinic near you? Contact the National MS society to find out. NMSS.org is a valueable resource. Call the company that makes your interferon meds,and have them help you find a local MS center to get into.

It would be different if you felt that this new MD understood you, supported you, and was really going the extra mile to help you, but it sounds like he/she is just unraveling years of hard work. Call your old MD and ask for a new referal.

I am not saying the old MD is wrong or right, or the new MD is wrong or right. What isnt right is to feel bullied and dimissed. Please see an MS center.

See a third neuro and see what he says.

Good advise above, Des. Please do get a third opinion from an MS specialist, Neuro and let us know how it goes.

Hang in there and hang with us.

Welcome..:hug:

Welcome...as you see, you'll get lots of great advice here. Ditto what was written.
I was experiencing symptoms for several years before I got dxd. I was told it was migraines, then told it was my fibro, and finally got a dx.
I too have leg pain. I have neuropathy, but I also have pain due to leg spasms.
Search out another opinion. If they back up what this new neuro thinks, at least you will have confirmation.
At the very least we deserve to be treated with respect, and not feel as if what we are experiencing is being disregarded.

Thank you so much for all your advice and responses.

I do agree that I need to at least get another opionion so that I can know what I do, or don't have.

I don't want to be someone who moves around from Neuro to Neuro because I don't get the diagnosis I want. My family think I should be so ecstatic because my diagnosis has been changed, and I thought I should just accept my new diagnosis.

I see by your responses that I should get another opinion and it makes so much sense.

Thanks

I am 54, was diagnosed at 23, and they place my disease onset from history of symptoms at 14 - long before MRIs. My case is fairly typical (as far as any MS case is "typical"). Obvious relapses with textbook symptoms, remissions, weeks in the hospital each year, weeks in rehab. When the ABC shots finally came out, I started on Betaseron in 1995 and the weeks-long hospitalizations ended. No more in-house rehab. Fewer exacerbations. And so, even though I have had MS for 40 years, I've done fairly well. Until the last couple of years. My strength is gone, my left leg is made of wood most of the time. Most of the last 16 months have been spent is bed. But instead of treating more vigorously, or changing the therapy, my MD is suddenly convinced the dx is wrong! And the reason is the MRI - it is mostly clear just one plaque. Everything else fits MS - and the real clincher is that everytime she decides she's right, she retakes the LP and I always have 16 - 18 bands in the fluid, and for a female that's a pretty solid diagnosis.

So she has kind of pulled away from treating me actively. In December I had an acute exacerbation start: my eyes wouldn't track together and the left one couldn't see color, my left side gave out and just dragged, I had huge cognitive deficits (I sewed one button on a sweater and then couldn't remember how to sew on the next!), My PCP said to go to the neurologist, the eye doctor (after examining me) said to get to her quickly, and when I did, expecting IV steroids, she said "We can treat this with medication, or with therapy or just time." Guess which she picked, and which symptoms have gone away.

Des47, I totally see why you're not happy to not have a new diagnosis - it took me ten years of being told I was making it all up before I got mine - that was the standard in the 60's and 70's - and I don't want to be back at sea searching for acceptance again. Also, I don't want to go hunting for a new neurologist. As my PCP so professionally puts it, "Neurologists are lame". It is so hard to find a good one. And mine was great for years. Maybe they get hardened by our wanting them to cure these incurable diseases. I hope you find someone you're happy with. I keep hoping mine will go back to being the one I was happy with.

i have to also agree with dej. it definitely sounds like you need to find another neuro, preferably an MS specialist.

some drs are just better than others. before they dismiss so much i'd look elsewhere.

please keep us updated.

Welcome to both our new people. :)

Remember not all doctors and Neuro's graduate in the top of their class, some just pass, and are on the bottom of the list. I have had good Neuro's and green ones. Some keep up with the latest info and others just get by.

See an MS Specialist, in a large teaching hospital if possible, for at least one or more visits, to clear this up. They see tons of people with MS and other Neurological diseases everyday.

I did not present with "Classic symptoms" but a good clinician can do some tests and find out the problem better than Neuro shopping can. Good luck!