Is this MS Help please

[lolo]

Can someone please help me. The MD is telling me they do not know what I have. I have all the symptoms of MS including one O band. Can anyone suggest an MD in the upstate NY area Syracuse or other location. I went to Strong memorial in Rochester but they seem to not have time for me.

NO CONTRAST
MRI 3Tesla at Rochester Strong Memorial hospital. This is what my report said.

There are multiple T2 hyper-intense lesions which are which are predominantly peripheral and subcortical. The overall pattern of most of these is not typical for MS and there are no distinct periventricular and right angle lesions seen. These lesions are more commonly seen in nonspecific vasculopathy.
However, there is a cluster of lesions in the left hemisphere just above the basal ganglia region that are somewhat more diffuse and larger with an appearance that is more typically seen in demyelinating disease.
There is normal flow voice in the major arteries of the brain. there is no intercranial hemorrhage or mass lesion. no area of restricted diffusion.
In the right clinical setting, these findings could represent demyelinating disease.

Spinal tap was positive for one O band.
Symptoms include-
tingling in arms and legs
balance problems
weakness in right leg and right arm
memory and cognitive dysfunction
fatigue
pain like symptoms including zapping type pain and general muscle pain
right eye vision problems
Problems with weakness in right leg and right arm
Numbness in legs and arms
problems with speech at times
History of lesions in subcortical region

Many thanks for your help!

[Camsue]

Hi lolo

Welcome! I don't understand why physicians are reluctant to diagnosis MS..
My first major sx were almost 30 years ago and after the MRI and lumbar puncture the Neurologist sent me on my way without a dx..

Years later I attended the Newly Dx group with the MS Society..this same Dr was the local 'expert'..after his presentation I asked why he didn't dx me, his reponse "I didn't want to label you"
Today with all the treatments available (there were none then) I don't understand their continued reluctance..
Take care

[MSer102]

I's sorry your having so much trouble! But if your doctors who examined you don't know what you have and your MRI report says your MRI isn't typical for MS then nobody on the Internet can possibly tell from what you told us if you have MS or what you have.

Sometimes it takes several doctors to figure out what's causing neurological symptoms. If you contact your local chapter of the National MS Society they can give you the names of neurologists in your area who are familiar with MS. And even then you have to remember that you might not have MS so you might still have to keep looking for a diagnosis. Lots of conditions have exactly the same symptoms so its important to not get fixated on MS when there are other possibilities.

You said you have "right eye vision problems". That could mean anything. Have you been examined by an ophthalmologist? You have to see an eye doctor to find out what the problems are and what's causing them. If the eye doctor thinks you need to follow up with a medical doctor they'll tell you and can talk to your other doctors if it's something related to other health problems.

The National MS Society website has good information about how MS is diagnosed. I think maybe it would be a good idea to find out more about it so you don't start imagining things and can know what to ask your doctors. O-bands aren't symptoms and 1 o-band isn't enough to count for a diagnosis of MS so it sounds like it will take more tests to find out what's going on.

It sounds like it would be a good idea for you to check with the National MS Society and then see some new doctors to find out what's going on. Good luck!

[JerryD]

It's good that you had all of these tests. you didn't tell us about your blood tests. Did you have your blood tested for vitamin D, B-12 , magnesium ,calcium and hormones. Like MSer wrote, no one can help you over the internet. I am not a doctor and you would be foolish to trust a response from the web. Your doctors may not know what you are presenting with but if you try enough of them, someone will.
If you are like me, and you have the feeling that the standard MD's are just 'going through the motions', find an 'integrative' doctor. But my advice is that this doctor also has a medical license (MD- DO). This type of doctor is 'slowly' being accepted into the medical world. Some teaching hospitals are beginning to have 'integrative medicine' departments.

[Kate136]

Upstate New York

Lolo,

I am from Buffalo, New York and my dr is part of the Jacobs Institute in Buffalo General Hospital.

My doctor's name is Kolb, but they have many great drs in the group.

Best of Luck to you!

[lolo]

Is this MS?

I am also a Clinical Researcher and asked other possible causes to be looked into and many tests followed.
Everything was looked at including CNS vascultius.
I have had these symptoms since 28 years old I am 45 now. The symptoms have just gotten worse.
In addition,a neurologist diagnosed me with MS at 28 by MRI in which I had Sub cortical lesions but at the there was no treatment. Thank you all very much for your responses
Yes all were normal
B12 normal
Ophthalmology exam Normal for right eye. exam at MS clinic the right eye was not normal
ANA Normal
Lyme normal
Lupus Normal
ANCA normal
vitamin D, magnesium ,calcium and hormones all normal
Thyroid normal
RA normal
Sarc Normal

Can someone please help me. The MD is telling me they do not know what I have. I have all the symptoms of MS including one O band. Can anyone suggest an MD in the upstate NY area Syracuse or other location. I went to Strong memorial in Rochester but they seem to not have time for me.

NO CONTRAST
MRI 3Tesla at Rochester Strong Memorial hospital. This is what my report said.

There are multiple T2 hyper-intense lesions which are which are predominantly peripheral and subcortical. The overall pattern of most of these is not typical for MS and there are no distinct periventricular and right angle lesions seen. These lesions are more commonly seen in nonspecific vasculopathy.
However, there is a cluster of lesions in the left hemisphere just above the basal ganglia region that are somewhat more diffuse and larger with an appearance that is more typically seen in demyelinating disease.
There is normal flow voice in the major arteries of the brain. there is no intercranial hemorrhage or mass lesion. no area of restricted diffusion.
In the right clinical setting, these findings could represent demyelinating disease.

Spinal tap was positive for one O band.
Symptoms include-
tingling in arms and legs
balance problems
weakness in right leg and right arm
memory and cognitive dysfunction
fatigue
pain like symptoms including zapping type pain and general muscle pain
right eye vision problems
Problems with weakness in right leg and right arm
Numbness in legs and arms
problems with speech at times
History of lesions in subcortical region

Many thanks for your help!

[SNOOPY]

In addition,a neurologist diagnosed me with MS at 28 by MRI in which I had Sub cortical lesions

If you were diagnosed 17 years ago why are you asking if "this is MS?"

but at the there was no treatment

Actually, there was treatment 17 years ago ---Betaseron was available, by lottery, to the general MS population in 1993.

[fishead]

lolo,

Additionally, there are other disease processes that mimic M.S. I would hope those have been checked, as well!

[MSer102]

In addition,a neurologist diagnosed me with MS at 28 by MRI in which I had Sub cortical lesions but at the there was no treatment.

That doesn't sound right. Betaseron was already available and Avonex and Copaxone were approved by the FDA in 1996.

Ophthalmology exam Normal for right eye. exam at MS clinic the right eye was not normal

That still could be almost anything. Not normal in what way?

So what happened from the time you were 28 and already diagnosed with MS but told there was no treatment to now where you're asking IF you have MS and your doctor can't figure it out now? Is it the MS clinic that can't figure out IF you have MS after you were already diagnosed with it?

[lolo]

lesions

I forgot to add why they do not know what I have. The recent MRI showed lesions not in a typical place.
"cluster of lesions in the left hemisphere just above the basal ganglia region that are somewhat more diffuse and larger with an appearance that is more typically seen in demyelinating disease".

Many Thanks!

[JerryD]

You say all of these blood tests are "normal". I say I don't believe anything until I see the numbers. A 'good' level for vitamin D is above 50 or 60 ng/mL. 'Normal' to the regular MD is above 25ng/mL. See what I'm getting at ? Some people require higher levels to feel their best. Same goes for the other stuff. 'Normal' means nothing. The numbers tell the story. Good luck

[lolo]

Is this MS Please help

Hi
Thanks for your reply . Vit D level is 72.