New neuro says NOT MS?

[readingteacher]

Has anyone ever been dx 'd with MS, only to be told a few years later by another neuro, that you have something else?

I was really relieved, 5 years ago, to have ANY kind of dx. I just wanted to know what was wrong you haveth me. The MS specialist actually told me it was " anxiety." The very first neuro I had seen told me I had "migraines." It took so long to get a believable dx, that I had progressed from paresthesia and spasticity to myoclonic jerks, cog fog, and foot drop. I had been using a rollator for 3 years.

Yesterday, the new neurologist (my former one took on a role of training interns) told me that I actually don't have MS. He said that the MRIs I have had over the past few years haven't shown any changes. He told me that I actually have ADEM. I forgot what it stands for, but at least he acknowledged that I do have something wrong and that we must treat the symptoms. I think it stood for acute disseminating monophasic "encephalomyelitis."

On the one hand, I am glad to not have to go back on any DMDs. On the other hand, I had a VERY good neuro who had previously dx ' d me. The MS nurse, at the time, said that if (my former neuro) said "you have MS, you have MS."

I have a difficult time with a different neuro at the same hospital contradicting the dx of another neuro

[misslux]

Hm... no, I was the other way around. Dx of ADEM by a regular neuro in VA which was then diagnosed four years later by an MS neuro (findings reviewed by other neuros at the clinic) as MS (PPMS).

I know you are probably sick of tests and doctors but I wonder if it is worth getting another opinion? IIRC you are supposed to get worse with ADEM and the potential to get "better" with only residual damage (like foot drop) is pretty high.

Good luck with whatever you decide to do!

[Pipes123]

I just looked up ADEM on the Cleveland Clinic website. One way to to distinguish ADEM from ms is to get a lumbar puncture/ spinal tap. There are usually not oligoclonal bands in ADEM.

[readingteacher]

I just looked up ADEM on the Cleveland Clinic website. One way to to distinguish ADEM from ms is to get a lumbar puncture/ spinal tap. There are usually not oligoclonal bands in ADEM.

Actually, that is one of the reasons he gave for me having ADEM instead of MS. I had a lumbar puncture done (2006 or 2007?) and I didn't have the o - bands that often show up in MS. That was a few years before I was dx ' d with MS by my former neuro. Is that something that might possibly change? Not that I am thrilled with the idea of having another one, or anything; just curious.

[Marco]

There are definite benefits to getting a qualified second opinion when originally diagnosed. People in limbo want a diagnosis, but it's often better to stay in limbo than deal with a misdiagnosis. One of the difficulties of diagnosis MS is the vast number of other conditions that can cause any one of our clinical symptoms. There are times to ask your family doctor to talk to the various specialists and sort out discrepancies of opinions.

I understand there are a lot of emotions to sort through, but getting a correct diagnosis is crucial to getting the care you need. Based on your current situation, I would ask for the head of neurology to perform a case review. They should be more than willing to help considering one of their doctors made a potential mistake in your care. I am not talking about malpractice or getting lawyers involved. I am saying that someone there needs to do a sanity check and reconcile the diagnosis discrepancy.

Please continue to update us and I wish you all the best. Again, I am sorry you have to go through this exhausting and frustrating experience.

[MSW1963]

Had my MS dx reversed twice

The first time because of the politics involved in a general neuro who initially dx'ed MS based on too many to count brain lesions on MRI. Two weeks later I was to chose my DMD therapy. Instead the general neuro reversed MS when he realized I had an appointment with a MS Specialist, his former med school/neuro professor and current med school lecture coleague.

The second time after 5yrs with a MS dx and on Copaxone, I relocated 3k miles from my home town to the west coast. During the referral process to see a MS Specialist, I consulted with a Stroke Neuro who reversed my MS dx. It was during the time FDA reversed/revoked? approval for Tysabri after the initial CJV/PML scare in 2004-5. Neuro's were looking for mis-dx MS patients, a competition of sorts that was the result of Tysabri backlash. Both times I feel were the result of politics in the medical profession.

I personally would seek 2nd or 3rd opinion from an independant MS specialist, someone not affiliated with the MS hospital/clinic where you are currently treated, but someone with a reputation for their diagnostic skill.

It can be so frustrating, feeling like a pawn when dealing with some of brightest minds with the some of biggest egos in a very competitive profession. Best of luck getting an accurate dx.

[hawkvtx]

Well maybe I should get another neuro to see me afterall. My first one told me carple tunnel. But I knew that wasn't right because that didn't explain the other symptoms. So the 2nd neuro tells me MS. Two MRI's and an LP for the final dx. (hey I'm getting pretty good with the forum slang and abbreviations for a newb ) And I'm inclined to go with that dx because MS explains the symptoms I have and have had.

However he told me that he could send me to see an MS specialist at UAB in Birmingham if I wanted another opinion and would support me 100% on any decision I made.

So before I start any treatments for MS should I shoot for one more positive dx?

[Marco]

I would do this ...

However he told me that he could send me to see an MS specialist at UAB in Birmingham if I wanted another opinion and would support me 100% on any decision I made.

[mjan]

Its YOUR body, your life and YOUR symptoms! But.. I would want to know for sure. From what I read about ADEM, it wouldn't be hard to miss it. You get very sick, fever, change in consciousness from brain inflammation and more symptoms you would not miss. This would most likely send you to the hospital.

So do you remember any kind of sudden, acute onset like ADEM?

I would strongly suggest you get another opinion or two. Just because you don't have new lesions doesn't mean MS just went away.

I also had a benign or possible MS where the MS neuro said he never rules it out. He monitored me for 4 years, no DMDs, just oral steroids for symptoms. I had the "too many to count" lesions, or at least 20 whatever that means.

I had to change doctors with a new job/insurance. He then told me, No, you do not have MS.

See new set of doctors, get several new diagnoses, two which are rare that were getting missed. So I am grateful for new set of eyes. BUT they kept bringing up MS.

Finally they see the typical, classic MS lesions, get a 2nd opinion and think its a solid diagnosis. However, while seeing the partner of the original MS neuro, she wanted to honor his dismissing MS as a diagnosis. She leaves the practice and see the one who was my 2nd opinion.

I have not progressed too much. BUT cognitive issues cost me my ability to work. My spasticity has progressed slightly more, but its manageable.

GET someone else's point of view.

Let us know what happens, good luck!

Jan

[readingteacher]

Marco,
The funny thing about when I got my dx 5 years ago, is that I didn't believe my neuro for a few minutes; almost argued with him because I had been told so often that it wasn't MS. I had gone to see him because someone had recommended that I see a movement specialist. This was based on one of my weirdest (and scariest) sx; myoclonic jerks.

[misslux]

Sorry, earlier I meant to say you are NOT supposed to get worse with ADEM.

[hawkvtx]

I would do this ...

However he told me that he could send me to see an MS specialist at UAB in Birmingham if I wanted another opinion and would support me 100% on any decision I made.

I'm of the opinion that whatever specialist one see's that the diagnosis will be that particular specialists. If you go see a surgeon then he'll wanna do surgery.
If I go see am MS guy then I'm gonna have MS.

I've got a phone conversation set up with a riding buddy of mine that's a retired surgeon. Super guy and a friend so he has no vested interest in my treatment just my best interest at heart. This will be just for advice.

[hawkvtx]

Its YOUR body, your life and YOUR symptoms! But.. I would want to know for sure. From what I read about ADEM, it wouldn't be hard to miss it. You get very sick, fever, change in consciousness from brain inflammation and more symptoms you would not miss. This would most likely send you to the hospital.

So do you remember any kind of sudden, acute onset like ADEM?

GET someone else's point of view.

Let us know what happens, good luck!

Jan

No , I've not experiences any of these symptoms at all. Mine started out as numbness in my fingers and then spread up my arms. Later numbness around my torso. A few months later I had an acute burning sensation in my right thigh that brought me up and out of bed because I thought someone was holding a branding iron to my leg. Only lasted a few seconds though. Happened again a couple nights later only not as severe. After I saw the first doctor he put me on Neurontin and the numbness in my arms and torso went away and hasn't returned. But it's still in my fingers and hands and can only be described as if my hands have been chemically abraded somehow. I'm still on Neurontin BTW.

I do also have some bladder issues that I've always attributed more to my age and too much coffee however prostrate exams have been good.

My apologies to the OP , I didn't mean to hijack your thread.

And for good measure my B12 levels are still normal. 1st MRI did show inflammation in spine and the 2nd had brain lesions. The LP (buy that was fun) was the final straw I guess for the dx of MS. Doc says that I have plaque on my spine that's causing the weird feeling in my fingers.

Other than that I feel fine. No other symptoms. No dizziness, visual problems, spasticity or really anything else.

It's been over two years since I had that lightning bolt in my leg. I do get some numbness on my thigh from time to time.

I might be in a wheelchair tomorrow but I'm ok today.

[Marco]

I know it's hard enough having problematic symptoms.
Then you go to the doctor and get one diagnosis.
Then a second doctor gives you a different diagnosis.

Now you have the symptoms -and- a decision as to what doctor to believe. For the moment treating your symptoms seems like the best course of action. If you have vertigo, treat that. If you have pain, treat that. Then you will need to seek another opinion(s) to determine which diagnosis will remain.