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Topic Multiple System Atrophy / Parkinson's + Go to previous topic Go to next topic Go to higher level

By stillunsure On 2013.01.08 15:13
My husband's neuro just diagnosed him with MSA, which seems to be a worse diagnosis than PD (if possible). While he does have some of the symptoms, i.e., dizziness (has fainted at times), fluctuating bp and hand tremor, he doesn't have any others yet. Everything I've read said there is no definitive way to diagnose, and treatment for the most part is the same as with PD.

Has someone on this very helpful and comforting forum ever heard of this? is there something we should be doing other than going on with our lives every day?

Hubby has no idea of the seriousness of this diagnosis, and I don't want to tell him, so I've just burdened my adult children. Can someone give me some insight?

By jcoff012 On 2013.01.08 17:52
Hi, I am not versed in this, but I did research it a bit, so I don't feel qualified to comment. However, I don't want you to feel unwelcome.

There are a great number of excellent people on this board who may be able to help. I can only say that I have learned over these four years that although I think I am knowledgable, my husband does his own research, so perhaps your husband has done the same. Please give him time to acclimate to his new dx; that part I know about...it takes time to process the dx, the treatment, and one's mortality.

Good luck to you both and I hope someone with the knowledge of what you are facing will post some good information for you. Until they do, welcome. Jane

By LOHENGR1N On 2013.01.08 19:25
Still, MSA is an umbrella diagnosis under which you find Parkinson's Plus and a few other diseases grouped. I can understand your puzzlement and concern. I might help you to understand all this a little better knowing Parkinson's Plus is just another term the medical field will use as a code or shorthand many times between Doctors. In reality what it means is Parkinson's disease that doesn't respond "normally" to anti-Parkinson's medication. Or in other words the medicine doesn't control symptoms as well as they expect it to. Or atypical PD. I'm sure there are many in the medical field (of which I'm not) who would dispute what I've said and probably many who would like to give me a shot of something to shut me up :) . Many times anti- parkinson's medications don't work at first only to work when introduced later in the disease.

As one travels along the road with this disease it becomes obvious not everyone develops the same symptom or progresses at the same rate. Each is individual and our systems in the long run are affected, all of them. Our autonomic nervous systems (thing our bodies do without thinking) also. So we can read Multiple Systems Atrophy into that. So really to Us Non-medical Laymen and Ladies it's a case of Tomato's and Tomoto's! Many, many times over the years I've seen A diagnosis in a case go from PD to MSA to PD+ and back again until the Doctors settle upon one. (Or if it helps think of it more as a if we call it this then we're covered from mis-diagnosis) You're in the right place for information, comfort and help here on the forum. We're all here to help anyway we can so try to relax a little, take a breath, and don't be afraid to ask away. Take care, best of luck and hang in there

By carman96 On 2013.01.09 07:34
My husbands neuro of 8 years surprised me last year with a dx of MSA. I totally freaked. My hubby does not really understand so I did do some research. I found a movement disorder specialist at UC Davis in Sacramento that we really like. She disagrees about the MSA and says all his symptoms are typical PD. Except the low blood pressure which she said could be from his meds and did not mean he had MSA. Who ever thought we would be happy about a PD dx!
Whatever the outcome I'm glad we changed neurologists even though it is 4 hours round trip. Very important to have a doctor you trust and also to do your own research so you can ask the right questions.
Good luck and hang in there.

By seawench On 2013.01.09 14:06
My Husband was originally dx with PD 4 yrs ago and then MSA almost 2 yrs ago. After our experience with trying to cope under the assumption of PD we were both devastated and relieved to have the new dx.

The dx made more sense than PD, and after reveiwing the info on the disease, we agree that this is what he has. Just reading the brief description on the mayo clinic site, he could be a poster for MSA.

Some here would rather have a PD dx than MSA, some the reverse, all of us must deal with the hard realities of a devastating disease. I have found amazing support amongst our local PD caregiver's suport group, a regional MSA group on Facebook and a website for MSA that references individual blogs. This forum has been a lifeline in a lot of situations and is also very comforrting to know others who understand our struggles.

If indeed he has MSA here are some links to the above mentioned groups

Seawench

https://www.facebook.com/#!/groups/MSAPacificUS/
http://www.msaawareness.org/

By seawench On 2013.01.09 14:08
PS. you can contact me if you wish to talk more about it

By GladIhavehorses On 2013.01.10 01:43
I just read this post about MSA and now I am confused and worried. At my husbands last specialist appointment she noticed his blood pressure was very low and seem concerned about it and then she made his next appointment for 4month instead of 6 months. So help me out here. Does this mean he might have MSA and there is no meds for it and it is worse the PD?

By seawench On 2013.01.10 10:37
People with MSA have Postural Orthostatic Hypotension. The BP drops significantly when sitting or standing up and they can pass out.

Some medications can cause this problem, while on one particular med he had it happen everytime he sat up or stood up. Now we have a couple of episodes a week.

MSA is a chronic progressive deterioration of the automatic systems. When a sudden change in posture occurs the "Hydrolic system" takes longer to adjust pressure because it is weaker.

This is one of the indicators of MSA, but Low BP can be just that, Low BP and there are meds for it. Because my husband's BP is so unstable we are holding off on the meds until absolutely necessary as there is also a stroke risk in the other direction.

While POH is a big indicator of MSA, he had several other indicators and PD just did not seem to be a good fit for a dx. He was not having a satisfactory benefit from the meds, he was declining rapidly and he didn't have some of the more classic PD syptoms. He did however seem to have all the classic MSA symptoms and progression.

We are 9 yrs from the first known sypmtoms (seen in hindsight) into a average lifespan of 7-12 yrs. He is extremely healthy other than this disease and we hope to stretch the averages greatly. We have been married for 34 yrs and are able to be together full time because I am a resident property manager. We try to do as much as possible, while recognizing his limits and we intend to squeeze as much as possible out of life as we can while we still can.
Seawench

By blue2 On 2013.01.10 11:56
Glad, People with PD can have great fluctuations in blood pressure and often have very low BP. It alone is not an indicator of MSA. Low bp and syncope are often reasons for falls for folks with PD.

By LOHENGR1N On 2013.01.10 15:36
seawench, You two stretch that guesstimate way past the limit! These ranges aren't set in stone by any means! Way back when I was diagnosed with PD the Neurologist told me 15 to 20 years if I was lucky (I was 33 at the time I'm now 60) 27 years later I'm still kicking. Also look at Steven Hawking he has ALS with life expectancy at diagnosis of 5 years and He's still kicking many years past that too.

By LOHENGR1N On 2013.01.11 00:01
Glad, As I said above MSA is a kind of umbrella term but the medical field esp. the insurance part wants a diagnosis of something! So sometimes it is used until the symptoms become clearer. Both diagnosis MSA and PD are based upon symptoms present at exam, there are no definitive tests to diagnose one or the other with 100% certainty. And as to one being worse than the other? Who knows? Both will in time effect the autonomic nervous systems in our bodies these systems are the ones that work automatically, the one's that regulate our breathing, our blood pressure, our bowels and urinary movements. etc.

I haven't used my example in awhile and we have several new comers here so if You'll bare with me the easiest way to explain PD I have is; If you think about an old fashioned electrical fuse box. The current runs through the fuse completing the circuit and things work. Between the nerve endings in our brain there are little gaps filled with the chemical dopamine. A signal (current) passes through one nerve, through the dopamine on into another nerve making the (movement) circuit. This dopamine is made naturally in our brains. With P.D. the part of our brain manufacturing the dopamine has or is dying so less and less is made and we don't have enough to fill those gaps any more so like a fuse box without fuses the circuit doesn't work right or sometimes at all. and also why the autonomic system is effected as those things although automatic normally now get interrupted signals and sometimes no signal. Which is why with PD we have to take L-dopa to replace the lost dopamine.

I kind of strayed from the original question a bit back to that. Glad, in time the symptoms will become clearer and diagnosis will be more sure then for you. Try not to worry about the 4 months instead of 6 months between visits. This shorter time between visits doesn't mean He's getting worse quicker, In my view it really is better right now for the doctor to see him sooner and note any changes or new symptoms to get a handle on what is going on and how to go about treating and managing His disease. I hope this helps, take care, best of luck and hang in there.

By stillunsure On 2013.01.16 16:35
Thanks to everyone for all the responses. Can't always post since I still work full-time.

Hubby still doing well inspite of the MSA diagnosis. "Ignorance is Bliss" is a very apt metaphore in this case. I have decided to 'wait it out', and do nothing further right now unless his symptoms get worse. He's on the meds for PD and Aricept (only 5mg 1/day). Still can't (or won't) believe a MSA diagnosis, especially the way the neuro just came out with it. It boggles the mind how some doctors are so insensitive.

Keep the responses coming. They really help!

By Rempt2 On 2013.06.15 14:23
My husband went to a parkinsons clinic in Boston yesterday. the dr. said he doesn't have PD but instead MSA or Frontotemporal disease. The FT diagnosis says his personality changes. That doesn't apply to him as he has the sweetest disposition and always is grateful to people who help him (so far anyway). I'm not sure about MSA. He has always had low blood pressure but the nurses have noted extremely blood pressure. Neither diagnosis is a 100% fit but dr. suggested hopsital stay for tests or at a minimum a Spect test. We're going with the spect test for now. He said he doesn't have PD because 6 months ago he had minimal problems (walked 1/2 mile). His symptoms came on very rapidly. He is now down to 110 pounds for a guy 5 feet 11 inchest. He has had cognitive problems (can't add anymore (he was an accountant) and has problems with computer. He is still very alert at times and can comment on daily events. Nurses are suggesting hospice. I don't know if it will provide anything more than we already have. Ihave someone coming in during the day while I work but weekends and evenings it is me providing care. He had nice day today. We went out to garage to fix car and then spent time near the seaside. Small things but very important.

By olpilot On 2013.06.16 00:22
I have less faith in the medical profession in making a sound diagnosis of PD. I and someone I know went to the same movement specialist, were told you don't have Parkinson's disease, I am sure I do, PD meds are making a big change, he had a DaTscan that confirmed he has it. Diagnosing Parkinson's is as much luck as science. I think the rarer the disease the less likely to be diagnosed, PD is rare enough, although plenty of us have it, but so far from what I have seen and experienced Drs are for many in the dark as much as we are. I've had Drs tell me I'll note your multitude of symptoms, and not do anything. Not advise anything, so I think with everything available to all of us it is so important research and question and bulldog the medical profession. They may or may not be right, but Parkinson's varies so much between pwp it is hard to accept just one Dr. Orthostatic hypotension and syncope are not unknown to PD, that is what started me on this road. It happened on Christmas morning 2007, before that it was all depression. Plenty of nonmotor symptoms, but after being told on several trips to drs, that in itself doesn't mean you have Parkinson's, you add them up it means you just might have PD.

By stillunsure On 2013.06.17 14:48
To Olepilot. I continue to have less and less faith in all the dr's. (how sad is that). Hubby's hand continues to have severe tremors and he was forced to decrease the sinemet by 1/2 pill ea dose because it was causing his dizziness to increase without helping the tremor. He doesn't seem to be getting any worse, but I do notice increased anxiety (he always worries about something happening to me). I'm convinced he has PD and notice the tremors increase when he's unusually stressed. Only 2 yrs into this so I guess there's plenty of time to see if he gets more "symptoms". Still don't believe he has MSA, but it's so frustrating not to have an exact diagnosis. We keep going...

By Imtired2 On 2013.06.17 22:28
Please excuse my ignorance, but isn't there a test that can be done on the brain, such as an MRI, to get a conclusive diagnosis?
Dolly

By jcoff012 On 2013.06.17 22:36
Dolly, my husband had a brain MRI and to this day, we don't know why. His doctor gave us a CD with the scans on it, but no comment...? LOL

By olpilot On 2013.06.17 23:08
The DatScan is the only scan that can confirm Parkinson's, but unless you have really good insurance, forget it, it's about 7000 dollars. The fellow I mentioned who went to the same "movement specialist" as me was confirmed to have Parkinson's by the scan, she said he didn't have Parkinson's. You need to have a neurologist who will listen to you, and is willing to give "you" time, not just have you be another number to meet a quota. In almost all of my life something called "achoms razor" (sorry about spelling) , but the most obvious solution is most likely to be right. There a people who get these diseases and.it doesn't mean it's impossible, but I yhink you need to push drs and not just get an I give up, it must be something else diagnosis. Had my wife not been such a pit bull when it came to all this, who knows where we would be in the process.

By LOHENGR1N On 2013.06.18 00:27
Datscans can help confirm PD coupled with other motor symptoms but isn't a conclusive test either. It show the dopamine level in the brain but other conditions affect the levels of dopamine in our brains too. For instance manic is too much and depressive would show up a less dopamine as does PD. Which is why some medications used to treat bi-polar disease cause side-effects which mimic PD. Really diagnosing PD is tricky and unfortunately to even come close to being right comes through time and observation by our Neurologist's. That said in the world of modern medicine we live in the insurance companies WANT and DEMAND a diagnosis be made before they pay. So we're stuck for the most part with vague and confusing labels until symptoms progress to make a more concrete call as to what we have.

By McCall On 2013.06.18 13:12
the only positive thing I can think of for a diagnosis of MSA or PSP for that matter is that they are both on the Social Security Compassionate allowances list that fast tracks application for SSDI. where as Parkinson's is not yet on that list.


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