Something I've been curious about for a while now, but felt... selfish saying so to ANYONE. A few years after I started dealing with bad fibro flare ups and started to figure out what was potentially wrong with me, my grandmother was diagnosed with MSA. It apparently took a long time for diagnosis, because like fibro, MSA is relatively "new" and requires a "rule out everything else" type of diagnostic situation. Not too terribly long after she was diagnosed with MSA, she was also diagnosed with fibro.
My question that feels very selfish is, is my fibro maybe not fibro and just a precursor of things to come? Or could fibro itself be a precurser to MSA? It feels selfish because she's the one battling this terminal illness, and I'm here thinking, "Oh no! Is that what's to come for me!?" Little is known about MSA, other than of the 2-3 subcategories(depending on where you look), one of them is like Parkinson's and in the later stages there is crossover between the subcategories; And from the point of diagnosis, the patient is given 5-10 years.
I guess I don't really have any one specific question to ask, I'm just looking for thoughts on the subject from others... And if anyone else has family members with MSA, do you see any type of link?
I'm going to ask my aunt about it, as she has been very involved with what's going on with my grandmother, and she has acted as an advocate for my grandmother. I'm going to ask her about it, and about the years leading up to the diagnosis, but I don't know when I'll be able to get in touch with her because she takes a long time to return my calls.
Good morning Boratsmom
I don't know anything about MSA unfortunatey, but what I do know that you certainly have no reason to feel selfish asking! I'm sorry that your Grandmother has to battle the 2 diseases. I'm adopted therefore I don't have much information about family medical history which bugs me to no end. But you have the opportunity to investigate...you already have fibro. I don't see how anyone could be offended. You're just trying to figure out what potential complications may or may not be coming your way. It's your health and you have every right to ask whatever you like:-)
I hope someone can shed some light for you
Good luck
Hello Boratsmom,
I had never heard of MSA so I looked it up. The first thing that caught my eye is that it is most common in men over 60. I also agree with fightergirl. It is your right to talk to your doctor about the possibility of you developing it. My dad has Alzheimer's and that scares me with how bad my fibro fog can be. I talked to my doctor and felt much better after doing so. I know I always feel better after talking to my doctor about anything like that.
Good luck and Gentle Hugs,
Dottie S
How on earth is this selfish? When my father passed from AML a few weeks ago, I certainly wanted to know if there was a genetic component, especially with the sort of bone pain that I have had. If it was, and I was able to be diagnosed early, then something good came from the loss of that wonderful man. I think the same rule applies here.
Definitely tell your doc what is going on with your grandmother. If nothing else, he can be on the alert for possible symptoms and implement early intervention if needed. It may help to do some digging and learn all that you can about it, because chances are you doc may not know much about it. You can share your knowledge with him/ her.
MSA. Wow, that is a new one on me. Let me go and look it up. Be right back
I don't see how being afraid of a disease is selfish. You're just seeking knowledge and reassurance. That's normal!
From what I've read it doesn't sound like there is any sort of tie-in with fibro whatsoever. I don't know if it's something that you can inherit; I think you might benefit from talking to your own doctor and seeing if there's anything in particular that you need to keep an eye out for. A good talk with your aunt also sounds like an excellent idea.
The Mayo Clinic has a really good breakdown of the symptoms: http://www.mayoclinic.org/diseases-conditions/multiple-system-atrop... I like this site's rundown because it's much more user-friendly. But don't start worrying yourself to death if you have one or two symptoms because a lot of the symptoms go along with other illnesses too.
Okay, here we go:
In addition, the primary sign of multiple system atrophy is:
- Postural (orthostatic) hypotension, a form of low blood pressure that makes you feel dizzy or lightheaded, or even faint, when you stand up from sitting or lying down.
You also can develop dangerously high blood pressure levels while lying down.
------------------------------------------------
That sounds pretty specific and hard to miss. I would think you'd know it if you were suffering from either extreme of blood pressure levels. Also, the site does say that along with it being rare, usually it's people over 50-60 who get the illness. You sound much too young.
But if you're still worried, please see your doctor. I don't want to see you torn up like this over something that most likely isn't affecting you now and may never.
I'm so sorry about your grandmother having MSA. She will need a lot of care and support. This is not a nice disease at all. Especially when it's coupled with fibro. Maybe you could bond a bit with her over the fibro. I don't know. I understand that the natural inclination might be to turn and run away from all of this but it would sure be helpful to your grandmother if you could be there for her sometimes.
Gentle hugs,
Petunia
Well, I DO have both ends of the blood pressure spectrum. Well, at least I have the extremely high blood pressure randomly, and then I also get dizzy spells very often, but I'm not sure if it would be from low blood pressure. I don't live anywhere near my grandmother to physically be there, and she, unfortunately does not like to talk on the phone because of the MSA. Apparently, from what she said a few days ago, she's at the point where she is confined completely to a wheel chair. My grandfather takes care of her, and from what I gather, does a lot of carrying her up and down stairs and such. I wouldn't think that I would be developing it yet, seeing as I am so young - I'm more worried about my future. Also, it does happen to younger women, after I really started thinking about it I was looking around on the internet and found a few women about my age with MSA. It's very sad, considering it is 100% terminal - 5 to 10 years from diagnosis.
Again, I'm more worried of what's to come, and also curious I guess. Because so little is still known about both "syndromes" or "diseases." I am already more than likely bound to have Alzheimer's(all the way down the line on mom's side), Heart problems(every woman on mom's side), and severe arthritis(both sides).
I was just wondering if anyone else had thoughts on this, if anyone else saw any kind of link. I'm glad to know that none of you do.
Thank You :-)