MSAG

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I had an educational visit to my local hospital at the end of March with my neurologist and 6 of his colleagues and was given a diagnosis of probable MSA. I was a bit of a guinea pig as the panel posed lots of questions which I tried to answer as best could. My symptoms obviously led them to the diagnosis I got but am left feeling ---what now??

I guess it's just a case of wait and see. Not easy !!

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  • Hi🙂If that does turn out to be the case, search healthunlocked for MSA🙂xB

  • Starting to feel like a medical experiment that went very wrong!My son cheers me up he sings "The Adams Family!"If I do anything thick or drop anything...I am not quite sure which member of the family I am(Or he knows !I don't want to!!!)I said to him if I am a member I.e a lead member of the Adams family that makes you a member!!🤣

  • At least you can laugh about your situation. Not fine- I used to be so competent now I've lost track of the number of things I've broken? X

  • Me to everything smash-proof not me though!!All China up high!!Phone TV etc and my sons computer all insured a rubber Remote control container helped that was from Malin I think online !!Shame about life insurance!!My brother said never pay to see a Dr again ...Easy said but I have to say since October I am no further on thanks to him all I got was I don't specialise in this it's to complex(An MRI supposedly on its way and thanks to my brother who researched Neuroleptic Malignant Syndrome an appointment somewhere over the rainbow with Imperial College Neurological department🌈May I see results soon!!At least an MRI!!I emailed Jeremy Hunt over PIP assessment and waiting with 0 money coming in from the end of Feb until April the 6th the man said "I don't know and refered me to DWP!!So I emailed him back and asked if he had published his Tax returns!!No response!!!The man is worth a mint he could pay for the NHS single handed!!

  • I was relatively lucky once I had my MRI as it became obvious that I had atrophy of the cerebellum. I see my neurologist twice a year and my doctor in between times when necessary. I now have a diagnosis of probable MSA and am hoping it is a slow process. I wish you well on your journey and hope you make some progress. X

  • I will don't worry.I have I hope Been through far worse I am not perticularly after answers for myself but my Family need to know.The GP is great now I simply go only when required which is to often but that's to collect meds and blood tests and mainly Physiotherapy which has really helped..I may never get to the Olympic Games!!As a contender but maybe my son!!He has it in mind!!!

  • There is always the special olympics! My husband would totally win gold in falling over!

  • How long did it take for yours??The problem I have (Is I am taking legal action against my ex GP.He refused to pass on notes after the original toxicity!!They didn't even know I had epilepsy (He had no pharmacist)I made my own apts for routine blood tests was e

  • How long did it take and how long ago ?Taking legal action against an old GP with no pharmacist no doset box who gave no info to the next hospital gave me an injection that wasn't noted(Or the apt)My Mum was there!It went on from Feb 2015 projectile vomiting yellow bile that terrified me and my son 2x I went back for that made my own routine Blood apt that by chance found the toxicity (I went back 8 more times)He has refused until now to give answer's to anyone not even serious medical errors unit or forensics!!I am still on one of the drugs that caused the toxicity,was put on two of the same and more (I got from wallowing in major depression and PTSD not going anywhere to serious anger (Taking the action is not about money,It's pretty useless to me!!Its about answers and why when I went back and told him about the second lot of Toxicity Neuroleptic Malignant Syndrome he said (Oh s***)I thought exactly who for me my son and family or you?He gave me wrong drugs again (I broke my ankle the next day and thought no way I can't face this prat!)Even new GP when he finally got my notes found it beyond belief(He said it was traumatic for them reading!)I just paid neurologist his cash!!Last payment and met a man on the NHS for hearing (he waited 3 weeks???)And is not paying a penny I am seriously going wrong somewhere along the lines!!!😊🌈Wine and Wisdom tonight hopefully I win the wine!!

  • My writing and adding up beyond legible!!Everyday things are confused ??I loose the remote hiding it from my son .That took us all 2 hrs to find if you don't laugh which isnt always poss.Not for anyone.But I have cried enough to fill the entire ocean for me and my family I still do for my son he is 8.He predicted an apocalypse??I said we have had that already.I never ever cry alone it's to my poor Dad he accepts it(Sometimes joins me)But it's far less than it was...If it's really bad I have a perscribed anti-hystamine that stops it.My sleep is better not last night forgot the tablets!!❤️❤️But My sons 8th Birthday was a marker a really lovely time a roller-disco!!He is a real heart throb and loved by everyone his happiness is more important to me than any amount of money or my health.If it had been him I would be more than crying .And a child at his school with Lucemia gives me major inspiration.It maybe awful but rather me than any child(there is always someone worse off)At times it's scary I feel like I've lost my marbles but am aware of it that is terrifying.Trying to set up power of utourney has to be sorted but last on my list!!It's £500 and takes 2 months!!I am going to my first live concert!!UB40!!

  • I first went to my doctor in March 2015 with bad handwriting and I kept falling over and walking to one side.

    After all sorts of tests to rule out other conditions I was referred to a neurologist who reluctantly gave me an MRI scan. Since then I have had a spinal tap, a CO scan, a nuclear type n and various blood tests so it's not easy to get a diagnosis .

    You have to have lots of patience in this game.

    I am 64 and my family are all grown up which does make things easier but it is still a terrible condition.

    Keep in touch. It is good to chat with someone in same boat. X

  • Oh no the thought off all that is enough to send me running if I could in the opposite direction!!!This time on purpose!!!My brother had a spinal tap x 2 for his Cancer(Done by a trainee!!)He said he thought it was pretty awful!!I have so much titanium in my back I hope they can't do it!!I had 3 fractures of it and a pelvis that was detached for 13 days every time they log rolled me it took 5 of them..No how much morphine or other worse stuff Jeeze I crossed the pain barrier(Up and over it!!)Combine that with both broken wrist one a open fracture and the other also K-Wires.A crushed calcaneum.I don't know how they did it but they fixed me (I was pretty lucid then although reacted to morphine and Ketamine (Awful hallucinations )So no spinal tap.🤞The k-wires coming out was ok although seeing them was not my friend said don't look so I did(Think barbed wire sticking out your wrist and a man with a pair of pliers!!!The best thing I started then was the baclofen before the opp no sensation bellow belly button my brother cried seeing me (I asked him why?)It stopped my good leg kicking out in worse than a spasm it was excruciating.Eventually Oxynorm and OxyContin didn't give me hallucinations.They I had to cold turkey after the NMS but it was good I am now on still a lot of drugs but vitamins anti seizure x 3 different sorts (one still a problem)Anti depressants that work.I am not coming of those.I feel I got my self spirit back it's alive and kicking (It's been gone way to long)Somehow I muddle through if I could find the remote control it would help..I have 1 not the other.At times I am like a turbo charged bunnies a couple of them(but going round in circles making other people think they have lost the plot!!I may have but not a very dry sense of humour!!!

  • How are you??Its Ella?My neck got totally locked last night again a spasm I have had them ages in my neck they wake me up I can usually free it up but not tilt my head babmckwards not that I would need to!!The good thing is we came second at the wine and wisdom !!Beating a table full of teachers and a barrister our table was only of 5...The others had 8 The cheese I brought I donated most of it was nice the Brie and the Camonbare was so ripe we didn't even open it!!I had 2 glasses of wine that enabled me to answer a couple of questions 20,000 leagues under the sea author (my 8 year old is reading it!)And the cocktails I knew two (dry Martin ingridient!)Proper one thanks to my Mum!And the ingredients of a cosmopolitan ah one other (an Italian dish the others said it was cherry I said it was fish !)I was right not cherry ice cream !!Fish or Shark so then a discussion is a shark a fish??

  • If anyone knows if a shark is still a fish let me know??At least I know it's not a cherry ice cream like the rest of the table!!

  • Hi Bella

    I have not replied to you sooner because I was away for the weekend. We have a residential caravan in Tayport and it's nice to get away and try to think of no thing else .Sounds as if you had a good night with your cheese and wine . Enjoy it while you can as that may not be something you can do later on in the illness but you may as everyone is different. I'm okay just now a per from my usual wobbling and I am rather dizzy due to high blood pressure. Usually if you have MSA you have low blood pressure but mine is high - trust me!!

    Thanks for asking.Try not to worry too much.

    MinaX

  • Me I am in bed recovering from the wine and cheese the bed is half changed it may stay that way!!😜I am so tired I didn't sleep well last night?Again?Just was awake rather than asleep...As usual up and about sweating!Fetching a drink and going for a pee...Then didn't want to wake up.Got to sort out my medication tmrw with the pharmacist...Poor woman I don't know how I managed to do it on Thursday night forgot to take evening and bedtime Friday morning I was so confused I put the evening before and bed time for the Thursday and the Friday in my mouth spat the lot out pronto!!So now today is Monday I run out completely on the actual Wednesday Morning which is labeld as Thursday'b I have none apart from Saturday morning after that so somehow I am confused.com!!!

  • You probably are as well let me know if you no what I have done!!Actually the pharmacist can work it out!!My neck and shoulder still painful on right hand side this is becoming a permanent thing I need the blinking Baclofen stupid neurologist charged me £400 and made it worse not better.If the GP is on tmrw I going to see him I am not taking any pain killers it's muscle and joint pain(I am meeting up with a local lady and her husband (He has same as you and his brother)She sounds really nice and so does her husband I said look for a red head with crutches slumped at a table...😊At least people understand trouble is there are many different types (and I don't even know (yet )What type I have Other than my eyes are fine my speach is mumbled and slurred or people just can't understand.That varies I can't hear from another room although I blame it on others (That makes you shout!)I just feel like return of the living dead!!😬Do you have a problem with memory?This is the thing I am more worried about than anything I get in such a muddle people who I've known years or not I have gone up to people and said Hi how are you!!They havent a clue who I am or I get there names wrong(worst is the test people give you!You know me what's my jame?😶😶😶Or Caspar has to keep correcting me on his friends names...

  • When I was diagnosed about 30 yrs ago with SCA I was the same, no explanation, nothing.! Found out in local library & found about The Ataxian magazine, it's all different now.

    Keep positive

    Berejena x

  • 30 years sounds like quite a good innings.If I get as long as that I'll be happy. Meantime I'm trying to carry on as normal and keep as healthy and fit as I can be given my condition.

    Thanks for replying. MinaX

  • Rankin63, It's rough when one is going through a diagnostic challenge! Once, long ago, I was told by a well known neurologist that I had "suspected demyelinating disease" ( probable MS). I lived with that diagnosis for about 15 years. Now, years later, I have been diagnosed with Ataxia and PD, by a neurologist. Levodopa helps relieve my symptoms. So, it has been a very frustrating journey, for me. My best advice, in order to cope with not knowing for sure, is to take one day at a time, focus on what you can do, try and be positive (if you can), and get a second opinion. Wishing you the very best! Take care.

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