Possible MSA


#1

October 2015 I was at the gym and couldn’t work out why I was having trouble balancing on 1 leg while I stretched. Cut to February 2017, and 7 neurologists in 4 countries later, and lucky #7 orders a PET Scan (what you would call a DATSCAN) which finally confirmed a less active Cerebellum and Basal Ganglia.
So, give or take, I’ve been thrown in the MSA basket.
My walking is not much better than staggering and my arms are about 40% affected, with slow movements overall.
I’m on Madopar 100/25 x 5 every 3 hours, and Komtan and amantadin as boosters.

One of my burning questions is this: my Madopar only lasts about 30mins and then I am virtually immobile in a chair or the balance of the 3 hours waiting for anther dopamine hit. This has driven me to taking another couple of Madopar here and there during the day
Q: what am I looking at facing going beyond my prescribed dose?

Does anyone have this type of experience with Madopar ?

What are the other Madopar complements worth investigating?

Thanks guys…great to be here.

Ant


#2

By the way,im 46. Wont someone pls answer my question?


#3

Hi. Welcome to the forum. I guess that the reason you haven’t had a response is because MSA is rare and most of us forum members will not know about it. I only know what I googled just now.


#4

Thankss Jane, Thanks for the reply , Good point! I am more interested in the use of Madopar which speaks to the PD experience


#5

Sorry, I can’t help. I take 125, but just three times a day, and I find the effect quite long lasting.


#6

HI MinuteMinstrel

i was diagnosed i 2014 with Parkinson but last year I was diagnosed with MSA

I am holiday at the moment but will get back to you when I get back from it

Richie


#7

Ritchie244

Perhaps you would be able to tell me a bit about MSA

Keith


#8

hi
you will come to no harm taking a few extra madopar.
however, one of the differences between msa and pd is that after a few years levadopa stops working for msa and isnt much use at anytime, unfortunately. you are already taking entacapone (comtan).
that enhances the madopar.
watch out for amantadine as it can cause dangerous depression.
regards


#9

Will do Keith


#10

Thanks Turnip


#11

Jane,

My 125 only give me about 45mins .you?


#12

Turnip,

I don’t have depression but am on Escaletopram (Lexapro) just in case.


#13

Look forward to more Ritchie, enjoy the holiday


#14

Oh Turnip one more thing…what should Komtan (Comtan) feel like?


#15

5 hours.


#16

MSA;
I would like to know the following:
Ritchie

I would like to know the following about MSA:

What are the distinguishing symptoms differing MSA from ideopathic Parkinson’s?

How does the treatment differ?

Many thanks

Keith


#17

Hi minute minstrel

I was wondering if your neurologist has conducted a saccadic eye movement test which could as I understand it, go a long way towards distinguishing whether you have Parkinson’s or MSA, as the two conditions are extremely similar in early manifestation. As for how long the madopar lasts, I don’t want to appear trite or condescending, but when I was diagnosed over ten years ago I was initially placed on Sinemet which after only 3 or 4 months was having little to no effect and “luckily” was put on Stalevo,which I still take today. My point is that some medications work well for some and not for others, and it may well be that your Parkinson’s, if indeed it is that, may well be unresponsive to Madopar per se. I recall attending a seminar organised by a Parkinson’s support group in Australia where I was living at the time, where there were approximately 120 or so of us who were newly diagnosed (the criteria of this was anyone who had had a pd diagnosis within the last 4 years), and I can tell you that there were not two persons on my table of ten on the same medications/ strength of meds, so this would tend to highlight the highly individual nature of progression in Parkinson’s. I hope this is of some help to you and good luck


#18

ideally it should just make the levadopa last longer and turn your pee orange. however many people have various side effects and have to stop taking it (see the list that comes with the box).i found it ok when i was taking it.
cheers


#19

btw, msa used to be thought of as rare but that was because of misdiagnosis as pd. its actually quite commonish.


#20

hi all

i am in the process of writing up my story of the last 5 years of being diagnosed with parkinsons/msa but it doesn’t come naturally to me posting so forgive the rime its taking me to do this, in the meantime here is the difference that made me think I had MSA before my specialist sent me for test.

the main differences that made me think i didn’t parkinsons was…

  1. The medication never seemed to work for me I am on at present Madopar 100/25 x 5 every 3 hours and Amantadine 3 x 100mg per day the Madopar seemed to work ish for couple of years but nothing to say YES its working

  2. The rapid decline of health compared to other suffers of parkinsons disease I know parkinsons is a individual thing but compared to others my symptoms have been a lot quicker.

  3. Symptoms that made me suspect I had MSA were,reoccurring water infection never had problems with my water works before and now on permanent antibiotics , no tremor but very bad involuntary movement that has now disappeared for some reason, dizziness through low blood pressure which I am awaiting medication for after being tested for it last week. thats about it but mainly it was the speed of my decline and the medication not working very well that made me question if I had Parkinsons.

As for medication MSA is as you know very rare disease and as such does not get money pump into by the big companies so we only have parkinson medication to use which is far from ideal. so to answer your question of medication for MSA there is no medication solely for the treatment of MSA.

Like I said I will do a fuller version of this when I can but I am going through a bad patch at the moment

Best Wiishes
Richie