Started wondering today

[Jirel]

My father was diagnosised in about 1962 with Multiple Sclerosis. Now, apart from the fact that Lupus is primarily a disease of women, I'm starting to wonder if he might have had Lupus involving the nervous system. He did not have "conventional" MS. He had little to no pain. However, he lost his balance and control of his bladder. His hands shook. Both his balance and the hand shaking got worse and worse. Eventually he was confined to a wheelchair because he couldn't walk and his head began shaking as well. Those are the major symptoms that I remember. He died in 1979 (he choked to death).

I know that there's no way we can ever figure out what he really had, but I'm just wondering if that sounds reasonable to anyone else? I don't remember how they diagnosised him back then. I know they didn't have the treatments they do now. (I'm almost positive MRI's weren't around.) I don't remember much in the way of treatments at all. There was some physical therapy but that was about it. He was told not to work and was on disability for as long as I can remember. His mental capacity may or may not have been effected, its hard to tell as for many reasons he did not handle the problems well emotionally.

[JoD]

Was Parkinson Disease ever considered
http://www.pdcaregiver.org/WhatIsParkinsons.html

I know before I received my lupus dx. MS was being considered because of an abnormal brain MRI, which showed areas of demyelination or ischemic damage. It wasn't really clear. Blood tests went on to show I was positive for APS, which but the ischemic changes to the forefront. The lupus dx came about an year later. Do you know what testing your dad had done. What age did his symptoms begin? My uncle had Parkinson's and it was sad watching a vibrant man slow down considerably and he always hand hand tremors.
Joanne

[Jirel]

I don't remember what testing was done - I was about 7 when he was diagnosised and both he and my mother are dead. He started having loss of balance during the Korean War while in the military - that would be in his mid-20s. He was diagnosised while in his early 30s. All testing and diagnosis was done via the VA doctors. I do know that the only medication I ever saw him taking was for high blood pressure. Parkinson's sounds a lot like it but his tremors were worst when he was attempting to do something.

[Raglet]

hi there

lupus without any pain would be pretty unusual I think - even those of us who don't have frank arthritis (hot inflamed swollen joints) tend to suffer with arthralgia (sore joints, no swelling). So that along would make lupus less likely I would think.

But, MS is also an autoimmune problem, therefore in the same overall family as lupus

ask your doctor about it. I know my rheumie highly suspects my maternal grandmother had APS (as I do) as she suffered from a series of strokes in her 30s, had poor circulation. Her last stroke killed her in her late 30s.

cheers

raglet

[Douglas]

You write:
>apart from the fact that Lupus is primarily a disease of women

Exactly why it took the MDs thirty years to dx me. "Primarily" is so often taken to mean "exclusively". There are possibly more than the canonical 10% male lupies because of this selectivity factor: because physicians consider Lupus to be a woman's disease, they most likely dx men who have this blasted disease as having something else, or maybe as just nuts.
If I sound depressed about this it is only because I am.
Douglas+

[halfpintfl]

Jirel, MS is one of those diseases that "overlap" several diseases
all of which are under the umbrella of autoimmune. With MS in your family background, I would certainly tell my dr. as it should be taken into consideration. I hope I have described the umbrella effect properly, as I do not want to mislead anyone.

[Jirel]

I'm pretty sure I mentioned it to her - she has me down as having Lupus - I've just always wondered about him. He was 'atypical' as an MS patient because of the lack of pain. I Just have occaisions of wondering about my parent's health. I'm the only kid, their own families were all up north and they have both been dead for a while, so there's no way for me to get answers. Sometimes I get curious and try to back track. Possibly just a search for a sense of family as I don't actually have any as I never married. No problems, just wondered if any of it sounded familar.

[PatriciaWA]

Hi Jirel,

I have a friend with MS and your grandfather's symptoms are exactly like hers. She has no pain, no bladder control, has severe tremors in her hands and arms and often the head. She is seen at a local university medical center by excellent doctors and her diagnosis has never changed, even though I guess there is overlap. But who is to say your grandfather did not overlap into lupus. And for you there are people on different forums who have been diagnosed with lupus and MS.

I hope this ramble has been useful to you. Take care.

PatriciaWA

[peonyprincess]

Jirel,


A good friend of mine also has MS. She has what they call relapsing-remitting MS, meaning clearly defined acute attacks with full recovery which can have some residual deficits upon recovery. In other words, it comes and goes and can get worse with each attack. Demyelination, which occurs in people with MS means, is a loss of mylein which covers the nerves. The myelin helps the nerves receive messages such as pain and telay that message to the brain which in turn tells the body how to respond. If the conducto or myelin is destroyed, there is not a way to tell the brain that you are experiencing pain so that you can respond accordingly. In other words, it tells your brain that there is pain and your brain notifies you. Without the myelin your brain doesn't receive that message. There are meds that she can take, but she refuses, yes dumb I know. Anyway, some of the problems she experiences are balance, eyesight (her right eye is bad), exhaustion. She doesn't experience pain either. As a nurse, I have also taken care of patients with late stage MS and they didn't have pain either.

Many people have different thresholds for their pain levels. What we might consider horrific pain, to someone else might be a dull throb, etc. Another thing to consider is that taking your dads age into consideration, their age group didn't and for the most part do not complain of pain and discomfort as that is how they were raised. Back when he was growing up, they didn't have a whole lot of actual pain medication, alot of tonics, but few actual remedies. If pain medication was available, it was usually very expensive and the "upper crust" were the only ones who could really afford it. Example, my grandmother who is 86, denied that her hip pain was extremely severe. She MIGHT take a Tylenol and go on her way. Once she decided to have surgery, they found that she had been bone on bone for sometime and was being bull headed about admitting pain as well as admitting that she needed help sooner. Being raised during and after the depression put alot of different priorities on our parents and grandparents. It isn't until recently that the medical society is truly paying more attention to pain in their patients and how to properly treat it.

I would most definately remind your doc that MS is in the family history. Your doc may already know this, but a gentle reminder never hurts anyone. It is always better to be safe than sorry. I personally would rather be tested and rule something out as opposed to finding out later only to find that you cannot do anything about making life more comfprtable.

Nancy

[Jirel]

Thanks everyone. You have successfully explained the mystery of the lack of pain - not that I every wanted him to suffer any - and certainly not the kind I go through or any of the rest of you - but I had wondered why he didn't have it. Everything else does make sense now. On another note - I am SO glad its almost Monday. The doctors offices have been closed since Wednesday and I'm pretty sure I have an infection again. Now I can go in, get some antibiotics and start getting over it. The Cellcept is great for the lack of concentration but seems to be causing infections.

[TREBOR]

Jirel, MS is one of those diseases that "overlap" several diseases
all of which are under the umbrella of autoimmune. With MS in your family background, I would certainly tell my dr. as it should be taken into consideration. I hope I have described the umbrella effect properly, as I do not want to mislead anyone.

Halfpint may be referring to "Lupoid Sclerosis".