Re: Scared because my neurologist thinks I might have a demyelinating disease (like MS)

[Guest guest]

, I accidentally deleted what your wrote when I was cutting and pasting

it to put here but below is what experience I have had with MS and

small vascular cell disease :

Of course, I am not a neurologist but MS also has other symptoms besides the

ones you are stating and your headaches also have other diagnosis. I have

allergy induced migraines that have times lasted along as yours have.

MS usually comes on with a trigger and the MRI of the brain is looking for

" plaques or spots on the brain " Other diagnosing tests is an opthamalogic exam

spinal tap, and electrical impulse exams.

From the Med Net internet Search:

Examples of other conditions that masquerade as MS include inflammation in the

blood vessels, multiple strokes, vitamin deficiency, lupus, or a brain

infection. Sometimes stress-related disorders can lead to a misdiagnosis of MS.

In multiple sclerosis, researchers suspect that a foreign agent such as a virus

alters the immune system so that the immune system perceives myelin as an

intruder and attacks it. The attack by the immune system on the tissues that it

is supposed to protect is called autoimmunity, and multiple sclerosis is

believed to be a disease of autoimmunity. While some of the myelin may be

repaired after the assault, some of the nerves are stripped of their myelin

covering (become demyelinated). Scarring also occurs, and material is deposited

into the scars and forms plaques.

One of my good friends,Judy, whom I bowled with and saw every week got MS. We

saw Judy state she had a cold in her eye, then the next week, she said she had

vision problems, then gait and balance,had muscle spasms, numbness down her

legs, she got speech problems, tremors and got dizziness when she went to the

lane to drop the ball to bowl. These were visually apparent to all that knew

her and immediately after she had that " cold/virus " .

Judy had to someone and come help her with her child and she got where she

couldn't stand. This happened over a two month period and we did not know what

to do for her.

Since this was so sudden and her symptoms become so severe and including most

with MS, the doctors ordered MS testing. Judy had a spinal tap, which was

positive, Judy had a brain scan but it did not have spots or plaque, eye scan

was positive and electrical impulse tests were positive

Back problems cause all the symptoms you are speaking about,the muscle

spasms,gait problems, numbness. Nerve pain and parathaesias in the legs can come

from impingement on back nerves or herniated discs. I have this if I lay down a

different way. I can simulate it in my C spine by lying on my left arm and I

have a C spine bulged discs.

MS patients have heat intolerance in the severe winter. One of my MS patients

could not stand to have her sheets tight on her bed because it would cause her

to be more heated . The heat intolerance that MS patients have are much more

severe than you are speaking about. Some medications cause flushing etc and my

thyroid problem caused me heat and cold intolerance.

Cognitive difficulties happen as a side effect of opoids if you read your

medical inserts. Vasculitis can be caused by varying diseases in varying forms

that can disappear if the trigger is treatable. I assist a lady that has small

cell vasculitits from taking lithium for years and now has dementia because of

that but she has multiple spots on her brain scan.

I think your doctor is trying to rule out Ms or vasculisits etc not confirm it,

and being safe. Most doctors if they thought a patient was a candidate for

having MS would set them up for the testing I have described above especially an

immediate spinal tap and eye scan (which is inexpensive) and an early test for

MS.

Hopefully, he is just being cautious and you do not have either and you find out

why you have a constant headache.

The National Headache Foundation is a good website for contacts about your

headache. The National Multiple Sclerosis Society, a longtime society known for

its assistance, has a section, " Are you worried you have MS ?' section and what

it is, how it’s diagnosed, how it’s treated, what might happen or any other

issues that are of concern to you, call 1- to speak to one of the

information specialists.

I felt really helpless watching my good friend's symptoms increase from a

" common cold " we saw her have. She was a fellow Reservist officer and we did

military training together. She lost her commission and really was sick, in the

bed, with a terminal flu, she " kiddingly " called it.

She responded very well to the medication the MS specialist her neurologist sent

her to and she has remitting MS. It was very scary for us and glad she did well

but was down and out for awhile. The MS Society really helped her with

information and support and we did the MS five mile walk in her name.

I have had a Doctor tell me he was going to do testing to rule out MS, Lupus,

and Connective tissue disease and it was very scary at first, but my " heat and

cold intolerance " was actually a thyroid problem dizziness and gait problem was

a mastoiditis and inner ear problem which the thyroid problem caused my

cognitive, speech, and tremor problems which I was in a " thyroid storm " . My

spasms, nerve problems or impingement was my back problems and vision problems

was from the Lyrica I was taking.

These are personal experiences I have had with my friend, Judy, my patients, and

myself and the support systems I found. I hope this information is helpful and

you get the treatment you deserve especially for your headache. Bennie

[Guest guest]

Bennie,

Thank you so much!! What you have said is *incredibly* reassuring.

Especially because I have already had a spinal tap to rule out pseudotumor

and hydrocephaly, and the spinal tap was negative for those and for

everything else they tested the fluid for. This was when I was in the ER on May

2-3 due to my status migrainosus.

Thank you for making me feel much calmer.

e.h.

Bennie wrote:

> , I accidentally deleted what your wrote when I was cutting and

> pasting it to put here but below is what experience I have had with MS and

> small vascular cell disease :

>

> Of course, I am not a neurologist but MS also has other symptoms besides

> the ones you are stating and your headaches also have other diagnosis.

[Guest guest]

> wrote:

> Thank you so much!! What you have said is *incredibly* reassuring.

> Especially because I have already had a spinal tap to rule out pseudotumor and

hydrocephaly, and the spinal tap was negative for those and for everything else

they tested the fluid for. This was when I was in the ER on May 2-3 due to my

status migrainosus.

> Thank you for making me feel much calmer.

Thank You for the polite reply and anything I post to you comes from a caring

place and never a " Go do it " . I have been very scared being told I might have MS

or Lupus so I was revisiting that fear as I do anytime I see butterfly rashes on

my face.

I hope you find the specialists you need, the cared you deserve, as stress

really makes pain worse and I hate having to deal with the 8 plus pain I wake to

daily.

So, try to think he is trying to rule something out rather than you have too,

which is hard when you see it written. I hope you get relief on your headaches

soon and you find out what the trigger is. I did not know I was allergic to

things and allergies could provoke headaches but once I did, I was able to treat

my headaches.

Good luck on all the things you need resolved. Bennie