: RE: DRUG INDUCED PARKINSON'S/SINEMENT;digest 1801

[Guest guest]

Hello Jerry,

Good question!

Dan symptoms were predominantly OPCA with some SND and occasionally orthostatic hypotension. The later vacillating tremendously when his body was struggling with an infection. So, he had two out of three most of the time. Initially it was restless leg syndrome, balance problems and incontinence and blurred vision. we went to a lot of different doctors!

As a matter of fact the tilt table test was the determining factor in diagnosing Shy Drager or MSA as it is now refereed to now a days. At the time there was such a minute difference in blood pressure variation that they really weren't too sure. again, only after the tilt table test did they piece this small bit of information about Dan's bad reaction to Sinamet.

We were told that this is what makes this disease so hard to treat. Initially Sinamet exacerbates MSA but as MSA progresses there's a need for dopamine and this was what helped Dan the most.As a matter of fact, three years ago I had a hard time talking the Doctor into trying Comtan, he didn't think it would help. Again, as caregivers we need to be aware of new things and be willing to try. That was another song and dance. Getting them to realize that Comtan is like an octane booster and it needs to be administered at the same time along with Sinamet otherwise its just a placebo.

I remember him trying Mirapex, Wow! it was awful, it induced rigidity, he was like a dead man. As caregivers, we need to observe our loved ones, that's our job. The doctor is doing his best to help relieve symptoms but its up to us to see how the medication works . that's what makes MSA so difficult to treat.

Each case is individual.

What works for one person is not going to work for the next guy. We as caregivers have such an important job. We are the patients sole advocate. especially when the disease progresses and the patient can't speak for themselves.Boy! am I getting long winded here!

After Hopkins we went to NIH. There they determined that he definitely had Shy Drager. Which then included the classic symptoms.

Yes, the pathologist gave me a call. Dan did have MSA. She went into detail but its too complicated. I'll let you know. OK!

Anyway, didn't mean to be so long winded. I guess I need to vent and get rid of this anger about MSA. So thank you, Jerry. You take care, Hope I was helpful.

By the way, whenever I got prescriptions filled , I always ask for the flyer the drug company publishes. Its full of fascinating information., almost scary!

Bye, Ramm

Message: 9 Date: Tue, 8 Oct 2002 15:53:40 -0500 Subject: RE: DRUG INDUCED PARKINSON'S/SINEMENT;digest 1801, Since we speak so much on the list about OPCA advancing in many cases tobecome MSA, just wondering if Dan had all or most of the classic MSAsymptoms (particularly the hallmark feature of orthostatic hypotension)even though he apparently did not progress to MSA. And, were you givenany definite decision from the autopsy (or other tests) as to whether itwas an inherited or a sporadic form of OPCA? Regards, Jerry Cash

[Guest guest]

Hello Jerry,

Good question!

Dan symptoms were predominantly OPCA with some SND and occasionally orthostatic hypotension. The later vacillating tremendously when his body was struggling with an infection. So, he had two out of three most of the time. Initially it was restless leg syndrome, balance problems and incontinence and blurred vision. we went to a lot of different doctors!

As a matter of fact the tilt table test was the determining factor in diagnosing Shy Drager or MSA as it is now refereed to now a days. At the time there was such a minute difference in blood pressure variation that they really weren't too sure. again, only after the tilt table test did they piece this small bit of information about Dan's bad reaction to Sinamet.

We were told that this is what makes this disease so hard to treat. Initially Sinamet exacerbates MSA but as MSA progresses there's a need for dopamine and this was what helped Dan the most.As a matter of fact, three years ago I had a hard time talking the Doctor into trying Comtan, he didn't think it would help. Again, as caregivers we need to be aware of new things and be willing to try. That was another song and dance. Getting them to realize that Comtan is like an octane booster and it needs to be administered at the same time along with Sinamet otherwise its just a placebo.

I remember him trying Mirapex, Wow! it was awful, it induced rigidity, he was like a dead man. As caregivers, we need to observe our loved ones, that's our job. The doctor is doing his best to help relieve symptoms but its up to us to see how the medication works . that's what makes MSA so difficult to treat.

Each case is individual.

What works for one person is not going to work for the next guy. We as caregivers have such an important job. We are the patients sole advocate. especially when the disease progresses and the patient can't speak for themselves.Boy! am I getting long winded here!

After Hopkins we went to NIH. There they determined that he definitely had Shy Drager. Which then included the classic symptoms.

Yes, the pathologist gave me a call. Dan did have MSA. She went into detail but its too complicated. I'll let you know. OK!

Anyway, didn't mean to be so long winded. I guess I need to vent and get rid of this anger about MSA. So thank you, Jerry. You take care, Hope I was helpful.

By the way, whenever I got prescriptions filled , I always ask for the flyer the drug company publishes. Its full of fascinating information., almost scary!

Bye, Ramm

Message: 9 Date: Tue, 8 Oct 2002 15:53:40 -0500 Subject: RE: DRUG INDUCED PARKINSON'S/SINEMENT;digest 1801, Since we speak so much on the list about OPCA advancing in many cases tobecome MSA, just wondering if Dan had all or most of the classic MSAsymptoms (particularly the hallmark feature of orthostatic hypotension)even though he apparently did not progress to MSA. And, were you givenany definite decision from the autopsy (or other tests) as to whether itwas an inherited or a sporadic form of OPCA? Regards, Jerry Cash