[color]

Hello,
My grandmother was diagnosed with MS in the 70's, based on clinical observation only. However, her disorder is obviously dominant hereditary (50/50 chance of inheritance), and so I'm curious? The latest report that I got from a neurologist in Chicago is that "Most likely, she was misdiagnosed. There's just way too much inheritance at play for this to be an MS case." And so he has diagnosed me with "Autosomal Dominant Spastic Ataxia." I expected him to order additional labwork for me to rule out MS (I already know that I don't have any brain lesions -- but I read that one can have lesions on the spinal cord only and not in the brain at all, in some cases). However, he ordered genetic testing for me instead -- I guess his mind's made up...

Any thoughts?

Thanks,
Christina

[greta]

Originally Posted by color

Hello,
My grandmother was diagnosed with MS in the 70's, based on clinical observation only. However, her disorder is obviously dominant hereditary (50/50 chance of inheritance),
Any thoughts?

Actually MS is not dominant hereditary. What scientists think is that some people inherit a genetic predisposition to having MS (though a group of genes in concert) but that it takes something to "flip the switch" and cause you to have MS (like a virus, environmental exposure, etc) . This is all still supposition because noone has been able to definitively identify the genes or prove the switch theory. It's the best they've got.

My mom has MS, I have it, my brother has it, and my sister may have it as well. We hit the jackpot in my family!

[lady_express_44]

Greta has given you sound advice.

I am on the other end of the spectrum . . . there is no one on either side of my family who's had MS, and my mom had 300+ blood relatives. My dad was an only child, but none of his extended family has had it either. I'm just lucky, I guess.

If it deos not have some genetic component, it may be that families tend to be exposed to similar environmental factor(s) (triggers). Sometimes we are just more susceptible to certain disease, like with cancers . . .

Either way, your grandma's medical history is virtually irrelevant. If you have MS, you have it.

Cherie

[color]

Originally Posted by lady_express_44

Greta has given you sound advice.


Either way, your grandma's medical history is virtually irrelevant. If you have MS, you have it.

Cherie

Thanks to both of you for sharing, Greta and Cherie. Actually, would you mind sharing a little more with me -- that is, how were each of you officially diagnosed with MS, and when?? Also, do either of you take daily injections for your symptoms? Also, do either of you receive Social Security disability? Also, were lesions found on the brain and/or spinal MRI?

Thanks again!

Take care,
Christina

[greta]

Originally Posted by color

Thanks to both of you for sharing, Greta and Cherie. Actually, would you mind sharing a little more with me -- that is, how were each of you officially diagnosed with MS, and when?? Also, do either of you take daily injections for your symptoms? Also, do either of you receive Social Security disability? Also, were lesions found on the brain and/or spinal MRI?

Thanks again!

Take care,
Christina

No problem. I was dx'd in 2001. I had headaches that were lasting up to 3 weeks in duration and were starting to hit back to back. I suspected it was a sleep issue, and the neuro agreed but wanted to do an MRI just to make sure there wasn't a brain tumor. No brain tumor but several silent lesions. In 2003, I got a second opinion, another MRI, and an LP. The neuro confirmed MS, but called it infraclinical/subclinical since I hadn't had an exacerbation (only changes were additional silent lesions).

So far it's stayed that way. I started a DMD in 2003 and there have been no changes to my MRI since then. In total, I have about 10 or so lesions on my brain. I have yet to have an exacerbation and have no symptoms or other MS issues like fatigue or heat intolerance. I still work 40 hours/week and have an active life, for which I'm truly thankful.

I take a DMD which requires injections 3x/week. I've never had a spinal MRI - I've only had brain ones. I'm heading in for my annual MRI tomorrow morning. Keeping my fingers crossed that it shows a quiet brain for another year...

[color]

Originally Posted by greta

No problem. I was dx'd in 2001. I had headaches that were lasting up to 3 weeks in duration and were starting to hit back to back. I suspected it was a sleep issue, and the neuro agreed but wanted to do an MRI just to make sure there wasn't a brain tumor. No brain tumor but several silent lesions. In 2003, I got a second opinion, another MRI, and an LP. The neuro confirmed MS, but called it infraclinical/subclinical since I hadn't had an exacerbation (only changes were additional silent lesions).

So far it's stayed that way. I started a DMD in 2003 and there have been no changes to my MRI since then. In total, I have about 10 or so lesions on my brain. I have yet to have an exacerbation and have no symptoms or other MS issues like fatigue or heat intolerance. I still work 40 hours/week and have an active life, for which I'm truly thankful.

I take a DMD which requires injections 3x/week. I've never had a spinal MRI - I've only had brain ones. I'm heading in for my annual MRI tomorrow morning. Keeping my fingers crossed that it shows a quiet brain for another year...

Thanks -- I guess I'm really hung up on my family history, mainly because I have one affected aunt who is convinced that she has MS (from Grandmom), and that my disorder and my brother's were merely passed down through my mother as MS. When I say "affected," this is what I mean re: symptoms: gait difficulty, imbalance, neuropathy, slurred speech, coordination issues (swallowing, fine motor skills, etc.), fatigue, vision...and the list goes on and on with neurologic problems! The real clincher is that as I mentioned before, no one (mother, aunt, brother, myself) has brain lesions -- the only thing they found is cerebellar atrophy. Hmmmm??

Anyway, good luck tomorrow!

Take care,
Christina

[Erin524]

Originally Posted by color

Hello,
My grandmother was diagnosed with MS in the 70's, based on clinical observation only. However, her disorder is obviously dominant hereditary (50/50 chance of inheritance), and so I'm curious? The latest report that I got from a neurologist in Chicago is that "Most likely, she was misdiagnosed. There's just way too much inheritance at play for this to be an MS case." And so he has diagnosed me with "Autosomal Dominant Spastic Ataxia." I expected him to order additional labwork for me to rule out MS (I already know that I don't have any brain lesions -- but I read that one can have lesions on the spinal cord only and not in the brain at all, in some cases). However, he ordered genetic testing for me instead -- I guess his mind's made up...

Any thoughts?

Thanks,
Christina

I have one cousin (3rd cousin) who has MS. Autoimmune disease apparently is strong in my family. Got an aunt with rheumatoid arthritis, my sister has some autoimmune skin condition, my dad has heart problems which might have been caused by an autoimmune problem...my uncle HAD heart problems that WERE autoimmune related (his heart problem was similar to my dad's...my uncle died in 1995 from his heart problem and pancreatitis)

[michael178]

the autosomal dominant part of the Dx means that it takes one and only one parent to pass along the problem, that 50% of children will inherit it. As far as MS goes, it is not that strongly geneticaly linked; at most there probably is a predisposition towards getting the disease from a parent.

And I would be cautious about too strong of a correlation between MRI spots, no matter where they occur, and symptoms, there is not that sort of linkage yet. And spots on an MRI do not necessarily mean MS, there is a large group of diseases called leukodystrophies, for instance, that cause myelin problems. They are fatal genetic diseases, and they cause all of the symptoms you describe.

In addition to an MRI, a positive lumbar puncture is needed to Dx MS. It sound like the genetic testing is a hunt for something else, something worse than MS.

[lady_express_44]

Originally Posted by color

how were each of you officially diagnosed with MS, and when?? Also, do either of you take daily injections for your symptoms? Also, do either of you receive Social Security disability? Also, were lesions found on the brain and/or spinal MRI?

For me, the MS probably dates back to the late 70's, when I had boughts of headaches, a numb mouth, unusual fatigue, a few months of terrible "brainfog", and my kinee giving out. I learned to ignore the symptoms (when nothing was medically found).

In 1991, I had an attack that paralyzed me for most of a few months. I was given a spinal tap, but they botched it so I don't know if they got the information they needed or not. At the end, they dx me with either a virus in my central nervous system, or "probable MS". There were no treatment options and MS was a terribly scary proposition, so I refused a MRI and went back into denial. I had recovered almost fully, but continued with symptoms occasionally, especially around my pregnancies and child births.

In 2003, the same thing happened with the paralysis, except it went past my chest this time. I agreed to a MRI finally, and I had two large lesions in my spine and 3 small ones in my brain. They already knew where the lesions in my spine were going to be based on my two attacks, and they were right on the money.

I am on "permanent" LTD through my employer.

I do not take the DMD's but am on an alternative therapy called Low Dose Naltrexone. That is mostly because I do not fair well on most medications and only take 4.5mg per day of LDN. That is the only med I am on, on a regular basis.

Cherie

[weegot5kiz]

ok this is weird

I have been told been a number of docs and others headaches have nothing to do with MS

yet I also got my DX due to a massive severe headache from hell that put me in the hospital plus my reg 4 SX that they could never figure out,

the severe headache is and was to my advantage cause they could not release me tell me to go see a shrink and tra la la la away

they found the ms and at that time i was having ms episodes,

this pass 10 11 days now i have been having flares on my right side not the normal side for me and nasty mean headaches so bad i named it chucky for past 11 days

so are headaches related or not

i just read two of you post headache issues also


sorry to jump tracks here