MS or Demyelinating Disease

[Edge Of Ruin]

Neuro #1 diagnosed me as having MS. Neuro #2 diagnosed
me as having Demyelinating Disease. After Solumedrol
treatments in 2006 my major symptoms disappeared and never returned but I still have symptoms that linger on yet
I have never felt that I was in relapse. If neuo #2 is right
then does that mean I will never have a relapse but I will continue as I am, to have MS type symptoms such as vertigo, balance problems, occasional spasticity, etc.? Could it be that I will never be much worse than I am?

[Redwings]

Hi Ed:
You've got some things mixed up. Demyelinating disease is a category and MS is one of the diseases in that category. Just like citrus fruit is a category and an orange is one of the fruits in that category. An orange is a citrus fruit and MS is a demyelinating disease. So in that respect, both of your neurologists were correct (assuming for sake of argument that you do have MS).

The other thing you're mixed up about is thinking that it's possible to predict the outcome of your MS just by calling it a more generic name. Since it isn't known what causes relapses in demyelinating disease, it does not mean that you'll never have another relapse. You might, you might not. And it's possible that you might never be much worse than you are now, but it's possible that you might. MS is generally a progressive disease, so it's possible that it will progress and you'll get worse. Whether or not you have another relapse or get worse is determined by the nature of your case of MS, not by what you call it.

[KoKo]

Hi Ed

Neuro #1 diagnosed me as having MS. Neuro #2 diagnosed
me as having Demyelinating Disease. After Solumedrol
treatments in 2006 my major symptoms disappeared and never returned but I still have symptoms that linger on yet
I have never felt that I was in relapse. If neuo #2 is right
then does that mean I will never have a relapse but I will continue as I am, to have MS type symptoms such as vertigo, balance problems, occasional spasticity, etc.? Could it be that I will never be much worse than I am?

Ed, MS is a demyelinating disease. There are other demyelinating diseases as well.

Did neuro #2 tell you which demyelinating disease he thinks that you may have?

I don't think that we can answer your questions - especially if your diagnosis is still not clear. Hopefully your neuro will have some answers for you at your next appointment, or maybe you could call him?

In any case, here is a list of demyelinating diseases:

http://www.livestrong.com/article/26...ting-diseases/

Sorry that you are still in limbo. That must be very frustrating.

Take care,
KoKo

[Edge Of Ruin]

No he didn't, KoKo

Nuero #2 told me I did not have MS but Demyelinating Disease and he did not specify what Demyelinating disease but this is the Neoro who I left because I had no confidence in him. When I told him about my cramps and
Charlie horses and asked him if he could give me a medication for spasticity he felt my hands and said "You have very strong hands. You do not have spasticity." I told him the spasticity was not in my hands but legs and feet. I think he was confusing spasticity with the word "Spastic" as in cerebral palsy. He is a man from India with a strong accent and mumbled. Looked moody. After the solumedrol treatments I just never went back to him. I'd be thrilled if I didn't have MS, it's a horrible disease with no cure and it's progressive. Neuro #2 also based that I didn't have MS because I didn't have brain lesions. Only lesions on the spinal cord and that is an absolutely false premiss. You can have them on either or both and it's still MS. I had no confidence in him and didn't like the man so I haven't seen a neuro since October 2008.
But, this comming October I will see neuro #3. I haven't had an MRI since 2006 so it will be interesting to know what's been happening inside my skull since 2006. I have been having strange hot prickly sensations coming up the back of my neck and on my brain. This is something new. Maybe I do have lesions on my brain now.

[KoKo]

Ed

Nuero #2 told me I did not have MS but Demyelinating Disease and he did not specify what Demyelinating disease but this is the Neoro who I left because I had no confidence in him. When I told him about my cramps and
Charlie horses and asked him if he could give me a medication for spasticity he felt my hands and said "You have very strong hands. You do not have spasticity." I told him the spasticity was not in my hands but legs and feet. I think he was confusing spasticity with the word "Spastic" as in cerebral palsy. He is a man from India with a strong accent and mumbled. Looked moody. After the solumedrol treatments I just never went back to him. I'd be thrilled if I didn't have MS, it's a horrible disease with no cure and it's progressive. Neuro #2 also based that I didn't have MS because I didn't have brain lesions. Only lesions on the spinal cord and that is an absolutely false premiss. You can have them on either or both and it's still MS. I had no confidence in him and didn't like the man so I haven't seen a neuro since October 2008.

I think it was wise to leave neuro#2, especially when you have no confidence in him.

But, this comming October I will see neuro #3. I haven't had an MRI since 2006 so it will be interesting to know what's been happening inside my skull since 2006. I have been having strange hot prickly sensations coming up the back of my neck and on my brain. This is something new. Maybe I do have lesions on my brain now.

Glad to know that you will be seeing a new neuro in October. Hopefully this one will be a good one and listen to you, answer your questions, and explain things to you. Do you already have your appointment?

Also, regarding the prickly sensations, I get them too, mostly when I'm too warm.

Take care,
KoKo

[Edge Of Ruin]

More thoughts

I have an MS Pen Pal who used to be on MS World back in
2007 named Dianne. After I left MS World we kept in touch with each other through e-mail but I never want to leave MS World again. There are so many people on this site with the right answers. In her last e-mail today she said, "Yes, there are many demyelanating diseases but what proves yours is MS is the lesions on your spinal cord, not characteristic of the other demyelanating diseases. The lesions prove it's MS. Is this true?

[Edge Of Ruin]

Oh, yes, I forgot

My appointment for the new neuro is October 17th. He must be good and much in demand since I had to wait so long to get an appointment. I bet I could see my last neuro
next week. His waiting room is was always empty and for good reason.

[KoKo]

Ed

In her last e-mail today she said, "Yes, there are many demyelanating diseases but what proves yours is MS is the lesions on your spinal cord, not characteristic of the other demyelanating diseases. The lesions prove it's MS. Is this true?

Gosh, Ed, I really don't know. But after reading the descriptions of the other demyelinating diseases, it seems to me that your symptoms sound more like MS, than the other ones.

My appointment for the new neuro is October 17th. He must be good and much in demand since I had to wait so long to get an appointment. I bet I could see my last neuro next week. His waiting room is was always empty and for good reason.

Let's hope he is a keeper!

Take care,
KoKo

[Redwings]

she said, "Yes, there are many demyelanating diseases but what proves yours is MS is the lesions on your spinal cord, not characteristic of the other demyelanating diseases. The lesions prove it's MS. Is this true?

No, Ed, that is NOT true. A defining feature of neuromyelitis optica is spinal cord lesions, very often (but not always) without brain lesions. In addition, neurosarcoid and neurolupus can cause spinal cord lesions that mimic those of demyelinating diseases. Your pen pal is misinformed and has misinformed you.

[lemstar]

Ed--
First of all, as far as getting worse, if it is MS, you still may not get really impaired. I have had MS for 31 years, I have black holes, and I am walking and working.

Secondly, I think that in the future, MS will be divided up into different illnesses, based on their origin. I think different people get MS for different reasons, and respond differently to the environment and to meds. I don't htink its one disease, and my two MS specialists agree with me. So the specific diagnosis may be less critical than you feel it is.

There were 29 years between my first episode, and my next exacerbation. The future always remains a big question mark, but not only for those of us with MS, but for everyone!