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Topic 1st post here PD or MSA? Go to previous topic Go to next topic Go to higher level

By carman96 On 2012.07.19 18:23
My husband, 66, was diagnosed with PD about 7 years ago. He is a Vietnam vet and is getting 100% disability for PD with dementia. He has been seeing the same neurologist since the beginning. Yesterday at our appt. the Dr. said he thinks he has MSA! He said we talked about it before. I remember he mentioned Shy-Drager as a possiblity but he never said that was his diagnosis. I think my husbands progression is pretty slow. He can still walk, talk, shower and dress himself. He doesn't have much tremor, his is more a stiffness and slowness. He also has hydrostatic hypotension and frequent urination. He does respond quite well to PD meds. From everything I have read about MSA, the progression is rapid and most people die within 10 years of diagnosis. I would think after think after all these years he would be in worse shape if he had it and not PD. I'm so confused and I am going to look for another neurologist now. Any thoughts?

By kaykaykan On 2012.07.20 02:26
We have seen three neurologists and while they are treating my husband for PD, two of the three question if it is PD. I would get another opinion with the recent diagnosis of MSA. I try to research every med and possibility and even take printouts to doctor visits for discussion. I may not be right, but at least I feel like I am making the best decisions for his care, based on trying to stay informed. I feel your pain.

By LOHENGR1N On 2012.07.20 19:39
carman96, Hi and welcomwe to the forum. Try going to the American Parkinson's Disease Association web site and look up the nearest Neurological Referral Center and ask His Neurologist for to set up an appointment for a second opinion. The Neurologist should have no problem with your asking for a second opinion and it will help him in treating your husband. Take care, good luck and hang in there.

By Elly On 2012.07.20 20:29
I feel your pain too. My husband, diagnosed with PD at 48 and now 53, was also told he might have MSA but now they don't think so. He has seen two neurologists with excellent reputations but the truth of the matter is that a lot of these brain diseases share common traits and accurate diagnoses can be difficult. It's very frustrating.

By carman96 On 2012.07.21 11:03
Thanks for the welcome and support. I do a lot of research on the internet, but after awhile it gets overwhelming. We live in a rural community and to go to a big medical center we have to drive at least 2 hours each way. Same with the VA hospital. I guess I have just lost faith in his neurologist to some extent. But I am going to try to see another just to get some better answers. It sounds like the doctors are just guessing sometimes, doesn't it?

By seawench On 2012.07.21 17:20
My husband was originally dx with PD but 2 yrs later they changed it to MSA. Mostly due to his lackluster response to PD drugs, Hypotention and rapid decline. Up until last year he could still walk talk, dress, get up at night and spend the weekend alone if I was OT. That would have been about 7 yrs after onset of symptoms. He was declared disabled then because while he could do those things it wasn't recommended he be alone and he had other issues that prevented him from carrying out his job.

Prior to the Dr.'s Dx I had stumbled on a description of MSA and thot it was more likely, they confirmed it. His decline had been so rapid from the PD Dx and he had a minimal response to the drugs that I was begining to worry. I was tired of hearing stories about folks who were dx started their meds and lived "Life " again for 10 yrs. We never got the bounce back. I kept waiting but it never happened.

From everything I can find he appears to be classic MSA-P. If in your case your gut tells you it's not, it may still be a PD Plus disease, it's not always so clearcut.

Seawench7


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