MSA.....Multiple System Atrophy

Has anyone had any experience with this condition, which has been linked to PD due to similar symptoms?

Appreciate any input at all. Thanks.

[Icequeen10]

MSA is often di,agnosed as Parkinson's because it presents with same symptoms and there is an . early positive response from. taking sinemet. However the medicine does not continue to work , there is faster loss of function and ability than. in PARKINSON'S.

[Hidden in reply to Icequeen10]

Thank you icequeen10

Have you had any personal experiences with MSA?

[Icequeen10 in reply to Hidden]

No, except to think that I have. that or something similar.

[davidjosephparsons in reply to Hidden]

It is not straightforward. Before I go on, I need to asked if you or a loved one has been diagnosed?

[Hidden in reply to davidjosephparsons]

Yes....my neurologist feels that I have the Parkinson’s and MSA crossover....my words! Diagnosed with PD in 2013 but my symptoms are not typical PD and recent results from MRI and ongoing low blood pressure problems indicate the possibility of MSA. Very scarey. I don’t want to be a burden to my husband or to find myself sitting around in a care facility waiting to die.

I live in British Columbia, Canada.

[campos1004 in reply to Icequeen10]

yessss diagnosis’s in march of 2017. robs you of life medication is very hard to prescribe. got desperate and went to mayo clinic. saw a wonderful neurologist he’s trying every thing he can to help. also in MSA research great, nothing done yet. exercise every day which helps. any suggestions. god bless you! tried several meds.

[Icequeen10 in reply to campos1004]

do you still see a neurologist at mayo? name please?

[Hidden in reply to campos1004]

Campos, getting to the Mayo clinic would be almost impossible for me.

[enjoysalud]

There is a "searchbar" on the upper right hand side of the page (it's on the same line as HEALTHUNLOCKED) ....write in MSA and past sharing will come up.

[Hidden]

Birdworld,

MSA is a very serious neurological disorder that in my opinion can be significantly worse than PD. In some people the progression rate is rather quick.

Dr. Costantini has limited experience with using HDT as an adjunctive treatment for MSA and while he has not had as great results with MSA as he has had with PD, he has had some improvement with his MSA patients. Especially when they have started on HDT closer to the diagnosis date, so sooner is likely better than later if you decide to test HDT.

Here is a link to a post that will tell you all about HDT, Dr. Costantini (the founder of HDT), contact information, reasonable expectations, members experience and results and much more :

healthunlocked.com/parkinso...

Art

[GymBag]

There is a section / forum here at HealthUnlocked for Multiple Systems Atrophy

Top left corner of your screen "MY HUB" click

"Find a Community " click

type MSA

you will get The Multiple Systems Atrophy Trust 381 people

or here :

healthunlocked.com/msa-trust

[Hidden in reply to GymBag]

GymBag,

I just went to look at your link and I started reading. It hurt so much I had to stop. I take a lot for granted and I shouldn't! MSA is everything I thought it was and more, a very serious and devastating disease! I know PD and MSA are both neurological disorders, but one look at that forum and one look at this forum and they do not seem similar at all! It would be very difficult to go there everyday.

Art

[GymBag in reply to Hidden]

Researchers believe strongly now that it is an Autoimmune Decease and Autoimmune is the biggest thing being investigated outside of Cancer . Make the best of each day and try to be happy , now is not time to waste. There are methods to control pain to augment the medcaitions.

[Babowen898]

Hi, my husband was diagnosed with PD in 2013, PSP in 2016, and finally MSA in 2017. It is a dibilitating disease, to say the least. He has almost no balance, no fine motor skills — can barely feed himself, can’t pick up his pills, etc, extreme loss of vision, uses a catheter to urinate, suffers from constipation, uses a rollator, but needs to move to a wheel chair, requires constant supervision and care. If you have questions, feel free to ask. There are so many symptoms, too numerous to list.

[SilentEchoes]

There is a mouse model for MSA, research showed that cannabis was neuroprotective. Can't find the pubmed abstract but here is a link to get you started on research.

ncbi.nlm.nih.gov/m/pu

Best Wishes