Not the diagnosis I was hoping for but remember you don’t die from PD, you die with it. I did not swallow that one. Anyway turns out I won’t die from PD anyway because I don’t have it. I told my neurologist a year ago that my symptoms are telling me that I have MSA. He then asked me where I received my neurology degree and PD is his specialty and PD is what I have and proceeded to write me an Rx for more Levocarb. I was mad that he blew me off. it took me almost a year to get a new neurologist.
My first appointment was a zoom call which I told him that I wanted to get re diagnosed as I still thought MSA-P. I knew I would have to be on my way to the light to get a confirmation but “probable” is the best I could get while my brain is still warm in my skull. He made an in office appointment two weeks ago where I got my “probable “. At least now I know why nothing is working for me and I can make future plans accordingly. This is first time I wished I had PD
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Pilot108
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Well that's shitty. Sorry.
In your case, what are the distinguishing features/symptoms that lead you from PD to MSA?
For males, approximately 90% get erectile dysfunction as one of the earliest symptoms. Looking back I got it 5 years ago and my GP thought it was an enlarged prostate.
The standard Viagra/Cialis had no effect. Little or no response from standard PD meds.Fast symptom progression. No tremors. Major balance issues. Orthostatic Hypotension. Urge incontinance and trouble emptying the bladder.
I have no facial masking and no loss of smell but I do have Parkinson’s symptoms like micrographia etc.
My sense of humour has not been affected yet. I don’t blame the misdiagnosis on my first neurologist as MSA is usually diagnosed as PD first. I spent lots of time researching when I am unable to sleep.
I don't know whether this information will help MSA, but both conditions are similar.
Contrary to what the medical profession say, there is a lot we can do to Reverse Parkinson's Disease movement symptoms, as I have.
If you are prepared to do a little bit of fast walking and make other simple changes in your lifestyle, you can possibly do the same!
My Pd started way back in 1963. I was only diagnosed with Pd in 1992 and I reversed many of my movement symptoms by 2002 and have been Pd-medication free since 2002. At 86 I still live a normal life.
Think carefully before you start the medication route to deal with your symptoms. Medication does NOTHING to slow down the progression of your Pd and it has serious side effects!
If you take the Fast Walking route, beginning with only 10 minutes and slowly working your way up to one hour, three times a week. It does not cost a cent and it starts to improve your health and fitness immediately
If you want to Google My name, John Pepper, I will send you a whole lot of information to help you do what I have done and probably Reverse your Pd symptoms the way I have. I does not cost anything because I have made it my life’s task to help others succeed to deal with their Pd movement symptoms.
I believe you should just not look at John peppers post or replies. They obviously bothering you. John is trying to help people with his walking methods. It may not be a cure for Parkinson's but it at least gets people off the couch and walking which is good for anybody that's being a couch potato. There how many types of PD and it might just help someone. You never know until you try. Have you tried his walking methods? I do rock steady boxing which helps me a lot. Some people try it some people don't, the people that do, it's helped them tremendously, but it's not for everyone. Unfortunately, PwP's aren't able to go right now because of the virus, but they have on-line classes, which are not quite the same, but again, it's better than nothing.
Hi Pilot. I have helped a number of wheelchair-bound Pd patients by teaching them how to use their conscious brain to control their walking.Here is a letter from just one of them:
Email from Simon Griffith
2017/10/13
Hi John
I wanted to let you know about a man called George who you empowered to walk at your event in Wanstead, even though he arrived in a wheelchair. His wife was very moved when she saw him walk upright and even briskly and it reminded her of biblical scenes. He has since walked on more occasions and his children now encourage him to walk. One of the ways in which this has enriched his life is that he can enjoy his garden again and potter around happily. I understand that his walking has already led to improvements in his general symptoms as well as his self-confidence.
Best regards
Simon.
Wanstead,
London.
It just takes a few minutes to do, and it is possible, with someone to help you, to walk properly within minutes. Her are the instructions:-
Teaching the Walking Procedure
I frequently mention teaching people to use their conscious brain to control their walking. To avoid repeating this every time, I will now refer to it as the ‘Walking Procedure’.
Assuming that YOU are the teacher:-
You must first impress on the pupils the need to always concentrate on every movement they make! This is what I call “Conscious Walking”.
Then get them to place their full weight on their left leg and show you how far they can stick their right leg out, approximately thirty-degrees up in front of them, while keeping their right knee straight. Then do the same with the other leg, Now, ask them to show you how high they can raise themselves up onto their toes. Pupils have always been able to raise themselves up to where the heel was at least ten millimetres off the ground. If they cannot do that then tell them to practice doing it.
Then hold the pupil’s shoulders, from behind and ask them to swing their arms as high as possible. Every pupil has so far been able to raise their arms above shoulder level.
Then, hold onto the pupil’s arm, using your thumb and forefinger loosely around their wrist, with the forearms level with the ground.
Then tell them to lift their left leg off the ground and start moving the body forward and stick the leg out as far as possible, in front, and then straighten the leg and firmly place the heel onto the ground, with the foot at ninety-degrees to the leg, and place all their weight onto that leg.
The pupil should then be able to do the same with the right leg, followed by the left leg, etc.
The pupil is now walking properly, Now go faster and faster until you are walking normally. You will feel the pupil relaxing and probably smiling.
Then see if you can slowly let go and stay with them until they feel safe to continue their own. All that normally takes less than a few minutes. The pupil should then practice the fast walking as often as possible until they are confident.
That is the beginning of the return of their self-confidence.
If you Google my name you can contact me and I will help you, free of charge.
Hang in there! I’ve been through that misdiagnosing stuff myself, and it’s very frustrating. I do know one thing, and that concerns an MSA diagnosis. Research that I have read, usually states that the only way diagnosis is confirmed, with patients suspected of probable MSA, is post-mortem, with an autopsy. So, I don’t know if you’ll be able to get a firm diagnosis, of having MSA, from a certified movement disorder specialist/neurologist. Hopefully, you’ll get a satisfactory answer to your quest of finding out the best diagnosis.
Like ddamage says "I don’t know if you’ll be able to get a firm diagnosis, of having MSA, from a certified movement disorder specialist/neurologist".
I was recently told by a movement disorder specialist here in Canada that I cannot get DBS because I might have MSA-P, but was accepted for PTT procedure and diagnosed as Idiopathic PD in Switzerland.
The movement disorder specialist based his decision on a one hour of simple "in-office" neuro exam. However, I had a 10:30 hrs day of tests in Switzerland with EEG, MRI, CT scan, cognitive test, three neuro examinations (one without meds for 24 hrs, another exam one hr after first meds and third after another dose) all documented on video...
So, make of this what you want, in my opinion, there is hope.
Thanks for the info. As you know there is no positive MSA diagnosis until they are slicing your cold brain open on the table so a "probable" is all I could get based on a clinical exam, an MRI and a PET scan I had in Calgary a few weeks back which the radiologist alsocommented probable
I don't know your whole list of symptoms but PTT generally works better for those who are not super drug responsive. My UPDRS scores are two points appear on vs off. It costs nothing to contact the clinic and for their initial look at your records.
EEG at Sonimodul detects if you have ''thalamocortical dysrhythmia (TCD)''. I believe, but really not sure so take it for what it is..., that if there is TCD, the PTT procedure can help. But as I say, really not sure... Contacting them with a description of your symptoms doesn't cost anything. I am sure glad I did!
This is my first post at HealthUnlocked. I have followed this thread and would like to share some information that has helped me lest you find it useful.
I was diagnosed with MSA about 4 months ago; confirmed by 2 neurologists, 3 others mentioned to wait and see. Had a battery of scans and tests ordered by them
I decided to take the approach of symptom management. My goal is to maintain my state and not deteriorate further.
1. Orthostatic Hypotension. I was prescribed Florinef and Potassium. It took a while permutating with the dosages and frequency but my bp is stable now. I feel of all my symptoms, this was the easiest to figure out - via trial and error but definitely possible
2. Weak voice, swallowing saliva issues. The speech therapist tells me with early intervention - the prognosis is good. I practise daily what I've learnt and the therapist adds on harder exercise every week. I feel this is the second easiest thing to resolve after the bp issue
3. Brain Fog. Whilst research has mentioned Madopar is effective only in some cases and only for a short period, I decided to try Mucuna Puriens - Barlowes 40%. I started with the smallest dose and worked up to something I feel is helpful . I do have good and bad days but without the Mucuna, it all just bad days. Sleep is affected and I use a CPAP. That definitely helps minimizing the brain fog
4. Balance Issues. I see a physiotherapist that specializes in neuro issues. For example - in lying down position, I don't receive messages from the brain to the muscles for the correct sequence so appropriate action of getting up can't take place. I was falling as my strides were not equal. Also, one side is weaker than the other. I would like to assure you that with daily practise and good instruction, I am now walking, able to get up from a chair etc. I practice twice daily. But these 'simple' acts can be very tiring as the brain burns a lot of energy to do these 'normal' things. So pacing and adequate rest is important
I now have a gym routine, leg strength is very important to build to prevent falls
5. Incontinence. The urologist did a VAT laser on my enlarged prostrate but it didn't help. I was sent to an experienced pelvic and urinary physio - but that issue is hard to solve. So to prevent infection from incomplete voiding, I self catheter a few times a day. I have accepted it and moved on - probably something I have to do the rest of my life
6.Other treatments I have am undergoing
a. Infrared therapy - I bought the WellRed helmet and used it for 3 months. I just ordered the Vielight duo and XPlus. I can't say if its helped but its like a security blanket for me.
b. Supplements. B1 injections 2x weekly, B9 and B12 vitamins, loads of freeze dried wild blueberry, Ubiquinol, Fish Oils, Curcumin
c. Craniosacral therapy. I feel electric currents down my legs during the session and i'm going to try it a little longer
d. Feldendkrais. This helps A LOT. I feel it builds up my brain plasticity. Just follow a good teacher online. I tried the one-to-one but the former is more helpful for me
e. Exercise, Exercise, Exercise, Logic puzzles, - anything to build neuroplasticity. This helps also A LOT
7. Other treatments being tested - heavy metals. The results aren't out yet
Pilot 108, it sounds a lot but this was done gradually over 4 months. I am retired so I consider the above my full time work. I put in 3 sessions a day split up morning, afternoon and evening. Having support really helps - it would have been really hard if I didn't have it
I've dug into my savings, sold assets as this is going to be long term. But I figured if I work hard at it and can maintain my state now, its the best I can do. I try to keep 2 steps forward so that when MSA pulls me 1 step back, I am still a little ahead
Pilot, I’m sorry you are getting the run around on your correct diagnosis. It’s had to move forward until you know for sure. And yes you can die from Parkinson’s and also die with it. I disagree when people say you don’t die from PD, a piece of “me” dies everyday with PD. I have been diagnosed both with cancer and PD and frankly PD scares me more. I knew I had the potential to get better with cancer (and I know that’s not always the case), but with PD you don’t get better , you progressively get worse every day. I just try to stay positive and not get sucked in to what I no longer am able to do. Take care. Karen
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