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Topic MSA diagnosis Go to previous topic Go to next topic Go to higher level

By stillunsure On 2015.08.12 15:15
I think I've posted on this subject before, but I don't come on too often and am still in the "denial" stage.

While my husband shows Parkinson's-like symptoms (tremors of the hands, arms and legs), his posture is still good and he doesn't fall, but he does collapse with increasing frequency. He has trouble maintaining his bp and at times, has just collapsed. I've taken away his car, and since I still work 3 days a week, he now just sits alone in the house being quite depressed with no desire to do ANYTHING.

I don't understand why the doctors cannot confirm or deny the MSA diagnosis and I don't know what the future holds. I do live in suburban New York City and should have access to the best doctors, but he just doesn't want to have any more tests.

Just needed to vent again and look forward to any and all replies.

By ResistanceFutil On 2015.08.13 09:30
I am unfamiliar with the symptoms of MSA.

Orthostatic hypotension is a symptom of PD and can cause blacking out when a person stands up.

Depression and apathy are symptoms of PD and are treated with psychiatric medications. A high percentage of PD patients will have these issues and they are thought to be a result of the neurological impact of PD, rather than, or perhaps in addition to, emotional reaction to a diagnosis.

I don't think that a diagnosis of either PD or MSA bodes a good outcome, but there are medications that a neurologist, or better yet a Nuero fellow-ship trained as a Movement Disorder Specialist (MDS) can prescribe to ease the symptoms you are describing.

Please keep us posted. Sorry you have to be here; I have found the support is helpful.

By carman96 On 2015.08.14 06:05
Is he on an antidepressant? Is he on Sinement or other Parkinson's meds?
A neurologist told my husband he had MSA, based on his symptoms, but he doesn't have MSA.
Now I take him to an MDS. He has PD with Dementia. No further tests were taken, other than the initial tests when he was first diagnosed, since he was and still is responding to Sinemet and the agonists.
They can only treat the symptoms. So a neurologist or MDS should be trying drug combinations to see what works best.

By LOHENGR1N On 2015.08.15 17:00
Stillunsure, MSA and Parkinson's Disease start out presenting most of the same symptoms, it is as the disease progresses that they start to separate and develop symptoms unlike each other. It can be hard to make an accurate diagnosis as there is no positive test used to diagnose either. (unless the brain is examined in autopsy). One sign they look for in diagnosing MSA is frequent falling which you say your husband doesn't present so that will cause hesitation to diagnose. Treatment for both MSA and Parkinson's is similar just different medicines as one will respond to a drug and another won't. I know it is very frustrating waiting and wondering and wanting a diagnosis But this is why they hesitate to jump to or proclaim illness until they've got a pretty good idea which it is and can only do so over time as they progress.

Other wise it becomes a big cluster of what the heck's like Jonny Cash, first they diagnosed Parkinson's Disease, then announced Shy-Drager Syndrome (a from of MSA) lastly changing it to Autonomic Neuropathy associated with Diabetes. Or Dudely Moore who was P.D. first then Progressive Supranuclear Palsey (a Parkinson's Plus Syndrome).
Hope this helps as to they hesitation with diagnosis. Take care, best of luck and hang in there

By stillunsure On 2015.08.20 14:01
Sorry it took so long for me to read all these helpful responses. My husband was in the hospital again after passing out and hitting his head. Since he's on Plavix, Neuro strongly suggested the ER, which of course, took me 2 days to get him released from. Once again, no helpful diagnosis. He happened to be wearing a 24 hr outpatient EEG monitor when it happened so I'm hoping it registered the cause/event, but haven't heard back yet (3 days later).

The scariest part is the passing out. He gets no advance signs, and this last one could have caused significant damage. Just so frustrated with the lack of response from his PDMD. Now they'll be looking at a 24-hr halter monitor to rule out cardiac issues.

What a trip this has become.

By ResistanceFutil On 2015.08.25 21:52
Guess what - I'm becoming well-versed in MSA symptoms as today that's what my husband's MDS said that he had. The MDS diagnosed him with PD in October 2013, with a DAT scan for confirmation. Then today, based on the main symptoms my husband has been experiencing and that have worsened since October 2013, he said my husband has Shy-Drager syndrome, an MSA. He said the classification was mainly academic, but this is what is presenting.

I think plain ol' PD would be my first choice.

By stillunsure On 2015.08.26 13:44
Resistance: I am curious about the "DAT" scan you mention in your post for confirmation. I've never heard of that. I've been told there is no definitive test to diagnose MSA, and that it's just a process of elimination. I would really love to know what additional symptoms your PWP has that would warrant that diagnosis.

So frustrated. Appreciate all the input!

By ResistanceFutil On 2015.08.26 17:59
The DAT scan is to help confirm a diagnosis of PD, although someone with MSA-P would show similar or same results, from my understanding. I've just begun to look into MSA and it seems there's a "tilt" test and several other non-invasive tests to help confirm MSA. The tilt test determines the difference in blood pressure between standing and lying down. My husband has been tracking this at home for sometime and his results are very telling: high BP when supine, very low BP within 2 minuets of standing. The other tests are MRI, fMRI but the doctor/radiologist would have to be on top of accurately reading the findings to make a determination of "probable" MSA. "Definite MSA" can only be diagnosed with autopsy. It took al,oat two years for my husband's MDS to make the call.

By ResistanceFutil On 2015.08.29 13:06
This is a good article outlining the current tests recommended if tyring to confirm a clinical diagnosis or MSA. The DAT scan is also mentioned.

http://movementdisorders.ufhealth.org/for-patients/movement-disorder-information/multiple-system-atrophy-primer-many-faces-same-disease/

By stillunsure On 2015.09.01 16:09
Excellent article. I appreciate the input and have a follow-up with the MD doctor on Friday. Let's see what she says.

By olpilot On 2015.09.04 02:47
My neuro has mentioned the possibility of MSA to me also, but sinemet still seems to help. One indication is that sinemet quits helping. I had a spell of falling and passing out a couple of years ago, seems my hemaglobin was down to 6 instead of 14 or so which it should have been. That was caused by intestinal bleeding from taking 2 advil a day for a very long time because of the pain another of my dr's said pd isn't associated with. I have found it is very hard to find doctors who really know anything about pd. Don't jump to a MSA diagnosis to quick. If that is what it is you will know long before you are ready and if not then you just need to find a very good pd doctor because everyone of us has a different pd. There are no 2 here the same other than the fact that pd is a merciless disease that just continues to confound the medical world and makes the lives of everyone it touches collapse. Be strong and take charge, my wife was like a pit bull for me, she pissed off a lot of dr's. These dr's of medicine have a lot to learn about treating real patients.

By stillunsure On 2015.09.08 13:42
You could be describing me. I've yelled and cursed numerous times through this journey just to be given a blank stare from the dr. as if I was a mental case. I give all the reasons why I don't believe the MSA diagnosis, but his PD dr. still says that's what "she's going with". Maybe I'm still in denial.

I do notice an increase in his confusion episodes and an increase in his "fugue" states as well. Just the other day he got out of the car and started to walk away on an angle, which eventually would have put him on the floor again if I wasn't there. He never realized it was happening and had no recollection of the event either.

Are these symptoms of MSA? Who knows? I certainly don't.

By LOHENGR1N On 2015.09.08 20:41
Still, that's piqued my couriousity. Anyone else notice the drifting off at an Angle? I've been doing that for awhile now. I joked with my personal care attendant that if she loses me go back to where she last saw me and walk at a 45 degree angle an she'll find me. I just thought it was a quirk I developed but with another Parkie developing the "habit" it might be something to dig into.

By Mary556 On 2015.09.08 22:50
Yes, my Mom sometimes walks at an angle (with her walker), but I am always behind her and nudge her back on course. I believe she usually drifts toward her dominant (stronger) side. She does that walking forwards and backwards.

By carman96 On 2015.09.09 00:12
My husband's first neurologist diagnosed PD, then later MSA. That was several years ago. We started going to a Movement Disorder Specialist. He does not have MSA! He has Parkinson's with Dementia.
They are guessing, and one of the symptoms of MSA is orthostatic hypotension.
But many PWP have that symptom at one point or another. There is no definitive test!
I would urge anyone with a diagnosis of MSA to get a second opinion.

By olpilot On 2015.09.09 03:32
The biggest problem with anything associated with pd is after a pd diagnosis EVERYTHING is just a guess. I find I walk at an angle, I stumble and walk like I've been drinking. I have had syncope events from hypotension all are part of or could be's. One dr told me pain and slow movements were not part of pd. I suggested she come to a support group meeting, she declined sent me to a VA movement specialist and when the diagnosis was pd treated me like shit. She didn't like to be wrong I guess. With anything pd don't take anyone dr's word. It is to complex and if they don't feel it or haven't experienced it they don't understand. We need to fight every step of the way and it will take a very good dr to understand and believe the multitude of things that are and may not be pd.

By VioletV On 2015.09.09 13:02
It's so clear that family practice docs, and even community neurologists just don't know much about PD.

My PWP husband and I have learned as much from books as from physicians who don't know. We have used

"Making the Connection Between Brain and Behavior" by Joseph Friedman and

"The New Parkinson's Disease Treatment Book: Partnering with Your Doctor To Get the Most from Your Medications" by J Eric Ahlskog to be invaluable resources.

Not cheap, but the first edition of the Ahlskog book (which is the one we have) is very inexpensive used on Amazon.

Or, urge your public library to order these.

VV

By stillunsure On 2015.09.10 10:27
Thanks to all for the input. To explain further about my PWP walking "on an angle"; I might have misstated. To further enlighten everyone (and maybe myself in the process), he doesn't actually walk on an angle per se, he's in a semi-conscious state when this happens. It almost looks like he's trying to find something to hold on to, but he's out of it. It's all very bizarre and doesn't happen on a daily basis.

It is my understanding that in order to diagnosis MSA, there should be other functionalities in place, i.e, incontinence, choking, etc... He has neither, except for the occasional nighttime incontinence. However, the damn confusion episodes are increasing daily. Yesterday, he couldn't remember our PIN at the ATM (we've had the same one forever) and couldn't remember where the gas nozzle went (he doesn't drive, but likes to feel useful so I let him fill up my car when I pull into a gas station).

So, my PWP friends... what do you all think? He's 77 today. I feel sad writing all this at work. Maybe my therapist can provide some insight.

By makrivah On 2015.09.18 00:14
I ordered the book VioletV recommended:
"The New Parkinson's Disease Treatment Book: Partnering with Your Doctor To Get the Most from Your Medications" by J Eric Ahlskog.

She is correct. It is an invaluable resource. I received it yesterday and have devoured the key info I was seeking. It is written in language we can understand. The organization of information is extraordinary, plus it has a comprehensive index. I highly recommend it to the PD community. I'm going to ask our local library to stock a copy.

By mylove On 2015.10.12 20:31
Our neuro just gave us the Friedman book. It looks useful.


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