| Donate | | The MSA Research Fund | | Start a Fundraiser | | Memorial Envelopes | | MSA Advocacy | | The MSA Blog | | Support Group Meeting DVD | | Sophies Search for a Cure | | MSA FAQ | | Support Group Meetings | | Doctors and Clinics | | SDS/MSA Clinical Trials | | Local Support Groups | | Hospice Information | | Board of Directors |
|
- No one logged in.
  20-Mar-2011 09:06 PM MSA SUX Posts: 7 | Hello,
I was recently diagnosed with MSA, after 2 years of symptoms. I'm 45 years old and am kinda nervous about all that's happening! My symptoms started with numerous falls, sometimes 2 or 3 a day. I was in the ER so often, they "gave" me a walker. I was still acting too proud to use it, until 5 months ago when I fell really hard, at my neurologist's office. It was terrible. I had on and off again amnesia for several weeks. After that, I use the walker. My short term memory is sometimes off and I get tongue tied a lot. My Doctor was at a place where he wasn't sure what to do, so he sent me to Johns Hopkins. I had an hour & a Half exam with the director. He's the one who dx MSA. For the time being, I am still taking Sinmet 25-100. I think it does lesson my tremors & my legs don't feel so weak. What worries me most is the future. How long will I be up and about and when & how will I die?
Anyway, I'm glad to find you all!
Penny | | | Reply |
21-Mar-2011 04:17 PM Bevie Posts: 11 | Hi Penny !!
I feel the same way. I was diagfnosed in June of 2006. i can't talk right, walk right or write!!
it's been quite a while that i can't write !! and that was something that i would always do. i loved it. i'm on Soc.Sec. disability and have been for about 4 years. then my husband had a stroke in March of 2009. Our oldest son was killed too in 2008. i don't fear dying, but i refuse to get to a point where i don't know anybody.
Please write back to me cause it's quite lonely. oh, and i just turned 58.
| | | Reply |
21-Mar-2011 05:04 PM MSA SUX Posts: 7 | Bevie,
Sorry to see we are in the same boat together! Almost all of my problems hit within six months. I had the drooling deal, but it went away after about six weeks. The falling, tremors, loss of vocal loudness, short-term memory, stiff neck are all still with me. I've had concussions, broken fingers, injured spine, sprains you name it and I've done it. I once fell and got trapped in the garage... pretty scary.
When I got the MSA, I pulled a week long drunk, something I would never do. My Husband is in denial. He says "I don't remember the Doctor saying for 100% sure it was MSA." Then I said "They can only tell for sure after you're dead!"
Anyway, I'm glad we have found each other!! Are you on any meds?
Penny | | | Reply |
22-Mar-2011 10:34 AM Bevie Posts: 11 | hi Penny,
i'm not on any med. only buspar, because i was told there is nothing to be done. that i just have to live with it.
our daughter graduates in June and i don't plan on being around much after that.
| | | Reply |
23-Mar-2011 09:08 AM MSA SUX Posts: 7 | Oh Bevie, you can't think that way. Your Daughter is going to need you so much in the future! These stupid Neurolgists are only playing a guessing game, about disease progression! 40 year ago, a neurologist told my Dad that he would be in a wheelchair in two years, dead in 5. He had MS and lived to be 76...no wheelchair ever!
I get down too, but I try to find something silly to get my mind off of it. I watch those ridiculous Jackass movies or call my Daughter (whose life is like a crazy movie). Anyway, I'm glad we found each other, My modem is going crazy so I may be off-line until later today. (The repairmen are coming noonish)
Penny | | | Reply |
02-Apr-2011 10:04 PM othermary Posts: 3 | Hello, I was dianosed at 42 and have never found anyone younger than 60 with MSA. How old is your daughter? I have a son who is 14. I'd love to correspond.
Thanks, Mary | | | Reply |
02-Apr-2011 11:14 PM MSA SUX Posts: 7 | Hi,
My Daughter will be 21 next month. It's funny how much better we get along, now that she's grown up. (Those teenage years were hell) I also have a son who is 23. How long ago did you get diagnosed? My diagnosis is weird. He says it's either MSA or Progressive supranuclear palsy or both! They are really similar. He wants me to see a neurophlamologist about weird stuff going on visually, but I am just sick of Doctors. How old is your daughter? The only med I take Sinmet. How about you?
Penny | | | Reply |
05-Apr-2011 01:52 PM Nancy Posts: 2 | Hello. Thank you all for making all this information available to those of us who are just starting down this road. My husband Mike was recently diagnosed with SDS. At least, we think that is what he had. Mike has had a defrillator in him for 17 years now. He has also dealt with small fiber Neuropathy which has steadily become worse. Now he has most of the symptoms of SDS, but a lot of them are also found when diagnosing Neuropathy and IOH.
We originally had a diagnosis of Parkinson's. We are still confused and would like another opinion. So we are looking for a doctor who specializes in this disease. We live in New York, right outside of the city. Computer searches have presented conflicting recommendations.
Do any of you go to a SDS-MSA Specialist? And where are they located?
Thanks so much for you assistance. I have a feeling that I am going to become a regular on this site. | | | Reply |
05-Apr-2011 02:06 PM Nancy Posts: 2 |
Nancy Halpin | | | Reply |
05-Apr-2011 08:10 PM MSA SUX Posts: 7 | I would check out the John's Hopkins Parkinson's webpage. When I went there, my dx was PD... but I knew that wasn't right. Dr Dorsey was able to give me 2 possible diagnosis - PSP & MSA. They are both so similar & really don't have any treatment, but at least I know I'm not crazy! Unfortunately they can only give you a 100% dx during an autopsy. He did give me some exercise options & told me to continue taking Sinmet. He said I'll know when I need to see him again.
Good Luck!
Penny
Penny | | | Reply |
25-Apr-2011 04:19 PM othermary Posts: 3 | Hi Penny, I have a son actually and he will be 15 in Nov. He has some special needs and does not know the prognosis of this disease. I live in Delaware and see a nero in Philly. She has me on a bunch of meds, I can't remember them all. One is for bladder control, blood pressure, fatigue and CQ10. I was getting OT, PT and ST but they have all dismissed me b/c there was nothing more that they could do. I can still walk with a cane, but fatigue very easily. I lose my balance and fall frequently. My speech is difficult to understand on the phone to unfamiliar listeners. All of this gets much worse when I am very tired. I think it may be time to give up driving b/c my vision is getting bad. MSA really does suck!
Thanks, Mary | | | Reply |
10-May-2011 02:57 PM peewee Posts: 4 |
You should see the expert on this, he is Dr. Robinson at Vanderbilt. | | | Reply |
03-Jun-2011 03:01 PM none Posts: 1 |
JEFF
My wife was diagnosed with MSA (Olivopontocerebellar is what the doctor originally called it) in July 2009. In the summer of 2010 she went to China for stem cell replacement. No success. She has also had steroids intravenous, to rule out MS, and IVIG Imuglobulin, which also didn't help. Prior to diagnosis she walked like she was off balance or drunk. She can no longer be left alone since she can't get up without assistance, or walk without someone holding her waist so she doesn't fall backwards. We have motorized chairs going up and down our steps inside the house. She has very low blood pressure, no strength, poor vision and severe depression. As we all know there are no pills for the disease and the meds she is taking for low bp, parkinson, and the depression don't seem to be doing much good. She is now in the 'hard to swallow or clear her throat' stage of the disease. Last night we were up until almost 2Am because she could lay down.
Does anyone out there know of any groups in the New York area? We live on Long Island. | | | Reply |
17-Jul-2011 08:11 AM Not Available Posts: 1 |
Hi everyone,My name is Angel and my boyfriend was diagnosed with msa a few months ago. He is only 47 years old.Infact we had only been together a few months before he was diagnosed.This has put our relationship into" fast forward". There are some people that think that I am crazy for taking on a relationship with someone who has a desease that could kill them.You can't help who you fall in love with.Besides,you could walk outside your front door and get hit by a truck?(right). Anyways,back on track. We have (I say we, because msa effects my boyfriend and myself) have a wonderful dr. at Beth Isreal Hosptial in Boston Ma.He specializes in msa. I feel it is extremly important to find a dr. that specializes in msa. I thank God everyday we found Dr. Gibbons. Are any of you aware of the case study that has been started?It is for patients that either have msa or who think they have msa. My boyfriend was asked to participate.He decided against doing it. In as trial study 50% of the patients get the meds-50% don't get the meds being tested.You don't know which ones you are on.This we felt would have been too much mentally to deal with.My boyfriend's symptoms have not gotten worse since he was diagnosed a few months ago.Therefore if he was to join the study and his symtomes were to stay the same-we wouldn't know weather it was the new meds or the fact tht he just wasnt getting worse-too much mentally to handle.This desease is so mentally challeging on a daily bases as it is-.Our dr. told us that some people with this desease live 20-or even 30 years.That is what I pray for everyday.People with msa need to be very proactive.You need to know how your body works. My boyfriend is very intuned with the way his body works.He takes meds for his blood pressure.One med during the day the make his pressure higher-one med at night to bring down his pressure.People with msa have extreme blood pressure readings.High when laying down-very low when standing up.For years he thought he had hyper tension.The he had a "tilt test" ordered by his neurologist.A tilt test is when you are strapped to a table and they tilt the test at different angles and take your blood pressure.The dr. said that Peter's blood pressure was so low at times during this test-that the machine couldnt read a pressure at all. The dr. said he feels the only reason why Peter can walk or even talk when his pressure is that low(sometimes as low as 65/45)Is because his body has become a accustomed to it over time.(the dr. thinks he has had this for about 5 years now).Luckily our bad days are few and far between right now.Peter just went on disability.Lucky for both of us i run a business from my house.Is anyone from the Boston area?Thank you for allowing me to vent. My closest friends know about Peters condition but I feel the need to talk to people that truly understand the issues I deal with both phyically and mentally on a daily basis.I am looking to find or even start a foundation about awarenes of msa.Does any one have any suggestions?thanks again | | | Reply |
28-Jul-2011 01:42 AM JoAnne Posts: 1 | I am so glad to have found this forum... My husband and I have been married for 17 years... He was diagnosed with Parkinson's about 8 years ago. I am a nurse and felt the way he was moving was so much like parkinson's symptoms, I asked one of the doctors I work with about it, sent him to her , and she immediately agreed with this diagnosis and off we went to a neurologist. His symptoms have progressed so quickly. For the past year I have been reading up on MSA, and thinking these symptoms fit him so well. Last week, I emailed his neurologist. Very concerned that he is passing out up to 4 times a day now.. Every symptom possible he has. His doctor emailed me back last night, and agreed with me in this is what he is thinking my husband has as well. He will get him back in in early August. Now, I am very frightened. I just held onto him again tonight so he wouldn't fall and hurt himself. My kids do not know what this new possibility is yet. My youngest daughter at 18 was in a car accident 4 days ago, and hit her head on pavement very hard. Had a small bleed in her brain,, and now I am watching her very closely for any changes in her headaches, dizziness etc... It's been a horrible week for us. My husband came with me for groceries yesterday, and he passed out in the store twice. I had to sit him on the end of a low buggy and take him out to the car. He is hallucinating at night, yells out often. I feel relieved in a strange way, to possibly know exactly what is going on, but the prognosis is so poor and quick. My husband is only 52 years old. We live in Canada, so there is very little for us here in the way of support groups. We do have some wonderful hospitals and doctors though.
I pray for you all, and thank you for being here. Just to write down my thoughts does help somehow.
| | | Reply |
08-Aug-2011 08:55 AM Not Available Posts: 54 | JoAnne sorry to hear your husband is passing out. This is a common symptom in MSA. Standing in one place will sometimes cause this so you should make sure that he doesn't stand for to long without moving. It's really suggested that a male shouldn't stand up while using a restroom, they should sit at all times. There are medication they can give him to help with the drop in B/P orthostatic hypotension. Eating smaller meals 5 - 6 times aday rather then the 3 larger meals can also help.
The acting out of his dreams is another symptom that they can have and there are medication that may help it also.
My husband was diagnose (dx) with MSA at the age of 56. Acting out his dreams started early in his dx. He also had the Orthostatic Hypotension and could black out like your husband would. I have a toll free number that is good to use in Canada/USA. If you should every want to talk please give me a call. I'm on PST and am up most of the time by 6am -10pm. If I am not there just leave a message and I do return the call.
Vera J
| | | Reply |
08-Aug-2011 08:56 AM Not Available Posts: 54 |
Sorry JoAnne, would of helped if I added my toll free number :o) it's 1-866-737-5999.
Vera J
| | | Reply |
15-Aug-2011 10:43 PM Not Available Posts: 1 | Hi All.
My dad was diagnosed about 3 years ago at the age of 65. Its a sad thing to see such a hands on, strong man reduced to a wheelchair and scooter. He however seems to refuse to let it get him down and its always comfortable around him. I'm not sure if he's just putting on a front for the kids but knowing how he his, he's just not letting this diagnosis get him down. I treasure every moment with him, even if its just stupid little things.
I'm here however because I worry about my mom. The impact on her as primary care-giver is enormous with this damn disease. To all the care-givers out there, I respect you immensely.
| | | Reply |
21-Dec-2011 06:22 AM Meaf0 Posts: 14 | Penny
I live in York, Pa. and just received an appointment at Hopkins - did they help you with clinical trials ? Thanks | | | Reply |
29-Feb-2012 10:06 PM Not Available Posts: 1 |
Hello. I haven't received an official diagnosis yet but have been dealing with all of the MSA symptoms since Dec. 2010. I have recently been referred to Dr. Stoessl in Vancouver by my local neurologist. I have seen every specialist in my valley and am
getting nowhere. It all started when I stopped being able to urinate naturally. I have to use an in-out catheter every time now which means I spend a lot of time infected no matter how sterile I try to keep everything. I am 44 years old, my wife and I have
2 small children. I own/operate my own business which is very physical in nature (stucco). I don't know if I'll be able to keep it going. Some days it takes all I have to get up and around. I am on sinmet as well for the tremors and I am finding it helps,
but I'm having to increase my dosage fairly quickly. I am also using a sleeping aid as I cannot achieve sleep on my own now. I am finding life very frustrating. All I want to do is be normal and go to work, raise my family, enjoy my wife. I am so tired
of being bounced around from dr. to dr. to psychiatrist, just to make sure I not making it up. Thanks for listening folks. I need to vent.
| | | Reply |
01-Mar-2012 01:32 AM Meaf0 Posts: 14 |
I'm 59 and have had MSA about one and one half years. My deterioration has been progressive, but the symptoms "seem" to ebb and flow in intensity as they deteriorate.. Penny, my symptoms pretty much mirror
yours. Speech therapy helped a lot with the slurring. My speech is halting but understandable. I can utilize a 4 wheeled walker in the house, and I can make about 30' to the driveway before my legs (which are becoming small) start to give out. I utilize a
wheel chair whenever I go somewhere. I recently started having trouble swallowing my food, which is basically slush. I am having liquids come back out of my nose. I am now scheduled for therapy to strengthen the throat muscles. I have learned not to fall by
using walkers, handicapped rails installed in the bathroom (takes forever to empty my bladder), and my wheel chair. I'm still strong enough not to have a powered chair. I have muscle pain 24 hrs a day, and use muscle relaxants to get to sleep.
OK, where do I go from here. I am scheduled to see Dr Grill, who is an Assoc Prof @ Hopkins and is a "fellow" @ NIH. He worked @ NIH for seven years before going to Hopkins. I am going to ask him to help me get involved with
any trial that attacks the disease, not the symptoms. I have learned to exist by using assisted devices and medications for my muscle pain. There is NO narcotic (I've tried them all in a hospital setting) that helps.
I am now looking to alternate options to attack the disease while under the care and observation of about 5 specialists and 1 primary who coordinates my "team". I recently had discussions with a research Dr in Colorado, who proposed that strained cannabis
could possibly re-normalize chemical unbalances. I will discuss this whole concept with Dr Grill.
Finally, there is a tremendous amount of information at the various Facebook and internet sites. I'd be happy to provide the information and/or "add" you to the groups which are "closed" to the general public. I also put my "wishes" in writing to my
primary. I have noted that I will not allow feeding tubes or any type of machine to keep me alive. I had this conversation with my Dr. who has attached it to my medical records, and my two sons. I signed powers of atty., and have gone to great lengths to
designate all aspects of my preparation to die. This is very important !!
Thanks to all my fellow MSA patients for posting your experiences here and elsewhere.
Tom Fitzgerald
| | | Reply |
18-Mar-2012 09:33 PM cstyles Posts: 1 |
Claudia Styles
This is incredible. For five years we have been to numerous doctors for my mother-in-law and no one had answers. One doctor tried to say that she was having mini-strokes, but there was really no evidence to support it. After reading about MSA...there is
NO DOUBT this is what she has. It is so hard to see her go from a strong woman to one who is now in a diaper eating thickened food and wearing a bib. I am so saddened by this. I would like to know what caused it. How can I find out if this is hereditary?
I worry for my husband.
| | | Reply |
-
-
|
|
