My sister had MS and I have MS, don't know if anyone else has it or had it. Im saying had it because she is passed away now. We have different fathers, so Im assuming its on our mothers side. Our mothers side, we have two cousins with spinabifida, is the autoimmune? Idk. My 2 youngest children are carriers for elephant man syndrome. So they have to be careful who they marry, and so will their children. Not sure if that's auto immune. Lots of stuff floating around.

My aunt was dx'd with MS. She died pretty young, 50, unable to speak or move. I think she could hear but could not reply.
My father's cousin, on the same "line" as my aunt, was dx'd with MS when in his early thirties. But he drowned not long after that, so I can't "follow" what happened to him.
But the kicker is that this is the same line which gave my grandmother, father, and me Porphyria. I am not saying that my aunt and second cousin had Porph instead of MS. No, I'm saying that these things seem to go together in one form of Porph. I did hear of one health professional (dentist, Dr. Downey of Portland Oregon, friend of Dr. Roy Swank, the MS doctor) who said these things always went together, but I suspect he just collected the cases where they DID go together, and wasn't really aware of the others.
Perhaps he had cognitive difficulty (he was recently retired when I talked to him). Dr. Downey said that he had both MS and Porphyria.

Ann I am simply floored by you being told that MS folks don't have pain or cognitive trouble. That's so wrong that I am wondering if a neurologist actually said that? I know I did hear a neuro talking on a multi-hookup MS discussion who said MS people didn't have pain, but he was basing this on his mother's lack of pain with MS, as far as I can see. How can he be basing it on widespread study?
A social worker told my MS support group in Seattle that the one constant symptom of MS is cognitive difficulty, which she pinpointed as "lack of executive function".

Sigh, as we have all said before there is no "one constant symptom" with regards to MS.

"Cognitive impairment occurs in 40-65% of multiple sclerosis (MS) patients, typically involving complex attention, information processing speed, (episodic) memory and executive functions."


Jongen PJ, Ter Horst AT, Brands AM.Cognitive impairment in multiple sclerosis.
Minerva Med. 2012 Apr;103(2):73-96.

Oh, yes. Tufts New England Medical Center, fall of 1981. :eek:
ANN

Ah, 1981...a good remission year for me.:)
Sorry about the year for you Ann.:(

Jules A, I think you are right. There is no "one" MS symptom which is in everyone, and cognitive difficulty, when it occurs, is selective. In my case, my son wonders why I can drive well when I can't manage complex computer additives and can't play chess. Also, I can still write well, etc. I told him the brain damage is selective. I find filing causes actual pain because I do have a problem with the filing function, but I do it anyway because I have to. I was that way since I was young, it was not a problem of old age. I found playing bridge caused actual pain (spasticity of muscles from trying hard), which was a problem since both my mom and my first husband were bridge champions. My little grandson wonders why I can't play chess. I could play it if someone took me back to the beginning and showed me slowly how to do it. I am not a whiz like my grandson.
Cognitive impairment can be painful.

I lost 14 points on my IQ due to this wonderful disease...memory, organization and processing are my major cognitive dysfunctions.
We are as different in our presentation of MS as there are different ethnicities in the world...it's just one of those things about MS that makes it so confounding for researchers and the physicians who treat us...

40 years of ms
 

was dx'd in 73 - had a few remissions - graduated to a cane - then to braces on legs - now to a walker - really a shuffler - in house and a wheelchair any where else - muscle spasms - cognitive dysfunction - oh yes - cannot think problems through - cannot spell well - I accepted my ms in hopes that my sons would be spared - they were/are not - the only immune disorders in my family were thyroid problems - tried copaxone for a bit over a year - did nothing at all and still have welts on legs 6 years later - working with holistic/naturopath md as of a month ago

KarenMarie, you hoped your sons would be spared MS--you say "they were/are not"--please clarify? Did any of your sons get MS?
I praise you for your patience and your love for your sons. And everyone here who hopes for the best for their children, I'm glad you are able to love in spite of your disability. I especially pray that your children will not reject you because of your imperfection.

My eldest son has just been dx'd with MS - my younger son has many of the identifying characteristics of the disease - my husband and sons have been totally supportive all these years - I could not ask for more :)