Possible MSA


#21

Pete thanks for your questions and sorry to get back to you so late. I came back negative for the security guy test. I think the MSA diagnosis relates to the state of my Bazel ganglia on my cerebellum in the pet scan. I’ve noticed that I can Barely function without madopar seven times a day. I have disturbed gait, freezing episodes and Chronic bladder infection. Also constantly dizzy, much like Richie below.


#22

Ritchie
Thanks very much for the information, especially when you are not on top.
form. I have an appointment with my neurologist this week so will ask him to review my diagnosis.
My syptoms are getting rapidly more intrusive, and the meds do not seem to help that much. My major problems are with balance and eye sight. I seem to have most of the other symptoms as well except for ‘the shakes’.
Keith


#23

I am not very good putting words on to post but I have ago…

Since about 2009 looking back I had signs that something wasn’t just right, it started with my handwriting initially and when I was relaxing watching tv I would jerk only once but as time when on it got more common but nothing to go to the doctor for…

Then in 2012 I had to have a back operation which was successful but left me with foot drop so I lost my job in 2013 after 36 years in uniform. I was sent for psychotherapy for 12 weeks which was normal pratice after a back op but during the course I knew there was something not right with my progress so I asked physiotherapist if there was anything wrong but she ensured me there wasn’t anything wrong and it would take time…

Well the backend of 2013 my symptoms were to the point I knew there was something wrong but didn’t know what, I had, jerking movements, slight freezing and slight loss of strength. The GP sent me to a Neurosurgeon who in turn sent me for a DATSCAN from the DATSCAN and evidence I was diagnosed with Parkinson disease which didn’t come as a surprise as I had put my symptoms into google and it kept on me coming up with Parkinson. My symptoms at the time was (All slightly) handwriting small, jerking (not tremor) constipation, soft/low voice, dizziness and stooping whilst walking…

In short time I got my head round having Parkinson and decided to go and enjoy life the best I could under the circumstances and went out a purchased a motorhome and travelled round France and Germany in 2014 for 5 months. During our trip away, I was not pulling my weight with the admin of motorhome which led me booking a appointment when I got back to the UK with my specialist. Who in turn put me on a higher dose of Pramipexole which work a little to start with but soon it went back to what it was so they introduce me to Co Beneldopa 100/25mg 3 x a day which didn’t seem to make any difference really so the last medication they put me on was Amantadine 3x times a day which again didn’t make much improvement to my condition either. At the height of my medication in 2017 I was on Pramipexole 3.1, Co Beneldopa 5x a day and Amantadine x 3 a day but still my systems were not improving so my specialist thought I would benefit in a pump fitted to my small intestine which would go directly to my brain so cutting out the middle man ie the stomach thus getting the majority of the medication my brain.

Backend of November 2017 I went to Newcastle under the understanding I was going for suitability for this pump, well it started off with general questions about my health but seemed to go into a sort of test appointment like the one I had for Parkinson’s. At the of these tests the consultant said she thinks I have Parkinson’s and wanted me to have a MRI Scan to confirm her suspicions which was confirmed two months later in 2018.

So I Have MSA now and with that comes the realisation that on average I got 6 to 9 years to live and most of that time will be bedridden I would have thought. This last 6 or so months I have gone from walking unaided to walking with a walking stick and now with a frame. I have a permanent bladder infection which would clear up with a course of 7 days antibiotics to only come back 7 days later so now on permanent low dose of antibiotics to keep it from recurring. I have balance issues due to low blood pressure, I have been seen and tested and awaiting medication for it. The other symptoms I have is biting of my inner cheek that gives me swollen cheeks, rigidity mainly in both arms which is quite painful, excessive duelling, slight incontinence, losing my speech to the point of requiring a microphone to be heard and going on to soft food due to choking.

So to sum up I personally diagnosed myself I knew of the speed of my illness there was something not right as I had done 3x 12 weeks course psysio and all those who were doing the course with Parkinson’s were deteriorating at a far slower pace then me! If you think you have MSA then go to this web site and have a look. If you are still concerned that you have MSA then tell your Parkinson’s nurse or specialist and ask to be assess for it.

Richie


#24

Ritchie244

Yesterday I had my self diagnosis confrimed; I have MSA or Parkinons Plus as my neuologist described it.

Thank you for your long post. I will write more later.

Keith


#25

I am sorry to here this news it taken a log time to get my head round it, I still dont believe its me who got Parkonson now MSA as I have been fit only had two weeks sick in 36 years…but I am living life to the full even with MSA knocking at the door with another trip to a specialist due it consistent bombardment of symptoms it comes up with

i am here if you want to chat in personal messsage or on here if you got any question I endeavour to answer them

Richie


#26

@Ritchie244
Thanks for ypur reply… You seem to have had a rough time. I will write more later. One of my symptoms is early waking but I feel ready for some sleep now. [ 03:54 BST ]. Kind regards
Keith


#28

Like yourself Ritchie my neurologist thinks i have mild msa i was in hospital for 4 weeks with severe hypotension was diagnosed with parkinsons june 2017 went to doc because i couldnt write but because of low blood pressure and bladder problems not infections just slight incontinence and due to not getting long out of sinemet i now take sinemet 5 times a day every 3 hours 25/250 at the moment im still very mobile and can do most things thank god im on meds for low blood pressure and have just been diagnosed with rheumatoid arthritis im 55 up until then i was very fit and energetic with no health issues at all and caring for the sick in the community i have now retired on health grounds i look forward to hearing how you have been since been diagnosed with msa and how old r you thanks cathy


#29

Cathy

I am 73, diagnosed in 2015 with atypical parkinsonism, subsequently self-diagnosed as MSA later confirmed by neurologist. I was falling unexpectedly which caused me to get referred Since then symptoms have proogressed more rapdly than I would like. i now have eye problems [blepharospasm & double vision],balance difficulties and urinary urgency, These are the most impactful ones; I have the full range of symptoms listed on the MSA Trust website but these do not impact quality of life as much as the ones identified above…

Hope you are ok.

Keith


#30

Keith only seeing your reply now im doing ok im great when i take 25/250 sinemet every 3 hours its when the next one is due is the problem however im trying to stay positive i go to yoga most days and pillates and i am still very mobile thank god im 55 was diagnosed with pd first but neurologist changed diagnosis to mild msa in November past


#31

Hi folks,this is very interesting as I have thought for a while now I am definitely not your average just case of PD. I was diagnosed about 3 years ago ( it took a while) I have already have ha d a lot of falls, trouble swallowing quite a few problems with hypotension. I take Madopar 100/25 5 times a day and 2 dispesable sir I needn them, as far as I can tell they do very little. Even had acupuncture yesterday. There is a great lecture on YouTube by a very amiable guy called Dr Jim Bower you might find interesting called diagnosing PSP CBD and MSA. My neurologist,who is a great guy by the way, said in one of his letters to my GB ‘I must keep an open mind’ Hope someone finds these ramblings of use. Keep going folks keep going


#32

Thanks for sharing this was very imformative