R was diagnosed with Parkinsons in December 2021 but the consultant suggested that it could be Parkinsons Plus. I question the consultant about this later last year and he said that it will all depend on the speed of the illness. He wouldn't go any further in to the reasons but I can's help thinking that you don't throw around the idea of Parkinsons Plus without having any reason to. Hubby is fine, he is not picking his feet up as well, has started to be vocal during his sleep and he is stooping forward a bit. I have noticed that he also has a low resting heart beat (through his fitbit) and weirdly his feet go red when he gets out of bed in the morning. Is it worth mentioning this to the consultant or am I clutching at straws because he mentioned Parkinsons Plus? Forgot to say, he has strong, brisk reflexes in his legs with a clonus and a positive Babinski on one foot.
We are still clueless: R was diagnosed... - Multiple System A...
We are still clueless
Sorry to be personal but any bladder or bowel problems (seem to often be a key feature of MSA) or problems with swallow and/or voice and has R had an MRI and DAT scan?
Also any medication so far and, if so, what has been R’s response to it?
He is on Rasagiline and is refusing to have anything at the minute because he feels he doesn’t need it. He is on medication for urinary problems and has been for a long time but has noticed that he is increasingly having problems with urgency again (he is also refusing to go to the doctors about that too).
he is also really feeling the cold in his extremities so the house is boiling.
There’s lots of people on this forum that have much greater experience and knowledge than me.
But for what it’s worth my thoughts are that, whilst it’s true that speed / progress of symptoms is one clue to Parkinson’s v Parkinson’s Plus eg MSA, there’s no absolute test and that’s only one factor.
With the array of symptoms you describe I think I would definitely ask the consultant for a further review. The MSA Trust nurses are great. Maybe phone for a chat with one of them first about where to go from here.
Good luck!
Hi, Parkinson's Plus or as it's known now Multiple System Atrophy is a degenerative condition that is fairly unique in numbers and individual symptoms although there is a lot of commonality.Unfortunately it's a slow diagnosis by elimination which is frustrating to say the least.
Chat with MSA trust who can offer a huge amount of information and help.
MSA does change with a new symptom appearing out of the blue but a lot of change happens when the sufferer has an illness or injury, so limiting these dangers is a must.
Shout Rant Rave or aks on here that's what it's for.
We are over 12 years on our journey.
Paul & Sue
Thanks for the replies. Just looked at his letter from the registrar and it says that the DAT scan has ‘shown abnormal appearance and is consistent with a diagnosis of idiopathic Parkinson’s disease or Parkinson’s Plus’. The nerve conduction study and MRI were normal.
Sorry that you are having to research so deeply into this yourself. My husband had a series of symthoms that he saw the GP for. He too had a normal MRI scan but the DAT scan showed and confirmed what was then describe as MSA. His voice had altered, sleep and strange breathing were noisy and alarming. We thought he was sleep apnoea. Urinary that lead to bowel issues/urgency. Sexual dysfunction, low posteral hypotension. Tingling in his lower legs. Cold extremes. Peter was a keen cyclist and he put his neck pain down to Sherman's neck. His BP would drop dramatically after eating. All of his symptoms came over a number of years but his mobility and standing declined over the last two years of his life. It is worth noting all mefical or physical changes and discussing with your parkinson nurses sn the consultant. I sorry you are here but you will be supported. My husband was officially diagnosed in 2018 and passed 2022 but his symptoms began much earlier. Looking back we still enjoyed life not knowing what was to come. That being said having a confirmation meant medication was useful and having access to services helped the it was eventually needed. I hope this helps but i fear you will be feeling reeling from this. Speak to the MST team and find a lical support group. That will help. Sharon xx
Thank you for your reply Sharon, I really appreciate it. I guess it is one of those medical issues that only time will tell on. I am Mrs Google at the moment, R doesn’t want to know so I am keeping all of the research to myself. We haven’t been introduced to a Parkinson’s nurse but have a consultant appointment coming up in a few weeks so will mention it again. I haven’t seen R’s scans so don’t know whether he has the hot cross bun sign but I did see that a positive Babinski and strong reflexes are likely to be MSA rather than Parkinson’s. If it is ok, I will hang around here until we have a better idea. Thanks x
Reflexes are normal in Parkinson's, hyperreflexia is seen in neuromuscular diseases like ALS/MND and Multiple Sclerosis. When I first began my journey, I thought I had MSA (my mother had PD, always normal reflexes). I went to the university and had ophthalmology testing, the electroretinogram ERG ruled out MSA, the optical coherence tomography OCT showed retinal thinning specific to ALS and a neuromuscular specialist was brought in to examine me. I was blindsided, ALS was not on my radar. Specifically ALS plus syndrome which is also called parkinsonism. There is a lot of overlap in neurodegenerative conditions. A negative EMG does not rule out ALS, plenty of people have negative results initially and as progression happens the EMG changes too. Everyone processes this information differently, some are proactive and others prefer to let nature take its course. This is the conversation you and your husband need to have. At the end of the day, its his journey even if it's not what we would personally choose. My close friend is going through a similar situation with her husband. I've had ALS for nearly 9 years, I've outlived both the ALS and MSA life expectancy and there are a lot of people like me. Keep the faith.
SE
Sharon is right. In many ways naming the condition doesn’t matter as one can only treat each symptom as it presents anyway.
Of course hang around with us! We are a good bunch! Do let us know how things develop.
Hi Mrs.Google, here's the criteria the professionals are likely to use;
movementdisorders.onlinelib...
Multi faceted urinary problems with a post void residual volume >100ml are virtually 100% guaranteed to be neurogenic origin in absence of trauma,SCI,etc. PVRV is trivially determined via ultrasound bladder scan.Takes under 10 mins.
Multiple other autonomic failures,, increases probability of MSA being correct DX ( on top of urinary).
It may be worth learning about the human autonomic sytems so you can keep an eye on them.
I was first diagnosed MSA 26/5/22. I now have about 20 different symptoms to cope with. this disease can move fast. any time you spend now researching and asking questions on here won't be wasted.
Thanks every so much for sending me this, I really appreciate it. Looks like R ticks quite a few of the boxes but has lost his sense of smell which is Parkinsons only. I guess it really is a waiting game.
I was recently told by my consultant that this is the criteria for acceptance onto a clinical trial but it doesn’t reflect ‘real life’ presentation.
I’m sorry to hear you have so many symptoms xx
Ah. Sorry to be the bearer of bad news. My wife, Adrienne, MSA-P has also lost her sense of smell. Disappeared quite early on.
Not at all, I appreciate you mentioning it.
My husband also lost his sense of smell about 15 years ago and has been dx with MSA although his new Movement Disorder Specialist is less certain about the diagnosis. His reason for caution is my husband's age, 78. Autonomic dysfunction has been his presenting symptom but more recently he has had Parkinson's symptoms. We are planning for MSA but hoping for PD. I understand your frustration as not knowing makes it very difficult to make decisions about our future.
Thank you for posting, R is 56 so I think he is prime MSA territory. Does the specialist think it is more likely to be Parkinson’s now? R doesn’t have a tremor , his presentation is more slowness and stiffness of movement. Hoping to get a better idea in 2 weeks when he sees his consultant again.
I’m sorry Rachel. 56 is so young. I was diagnosed last year at 52. Really question the MRI presentation x
52?? How are you coping with it all?? R is oblivious to the Parkinson’s Plus element/possibility because the consultant was extremely vague when I raised it last time. He is a great one for putting his head in the sand, won’t get his bladder checked out, won’t get some dodgy skin lesions checked on his face, has a skin infection but has only bothered to have 1 antibiotic a day as opposed to the 4 he is supposed to be taking. Feels like I am constantly nagging.
oh bless you both! I’m not really coping to be honest. I cry a lot. My consultant hasn’t been helpful at all. Please question every possible symptom and see another consultant if you’re not getting answers x
I'm sorry to hear that your husband is so young and dealing with this. Hoping it is PD. It would be great if he would agree to a trial of Carb-Levodopa - it would help to make the diagnosis. My husband's specialist tells us we need to wait a year or two so he can monitor his progression. He does not have a resting tremor but he does have jumpy left leg (myoclonus). He also has a low heart rate. The symptom that got him his MSA dx is severe blood pressure drops and supine hypertension.
Thanks for replying. The consultant wanted him to start Sinemet when he went a year ago but R refused because he doesn’t have a tremor. He is still of the same opinion so don’t think that will change. Interesting that you mention a jumpy leg, when R has his right leg crossed it goes up like a pulse really steady height and rhythm , is that myoclonus? He is also struggling to get off our sofa first time. Also, need to make a note of low heart rate, would his Fitbit measurement be ok?
So sorry that you are having to go through this.
It does sound like myoclonus. My husband's leg does this when he has his legs up in a recliner or in bed. As far as the Sinemet goes, I'll add that I was diagnosed with PD 11 years ago at age 55 (no tremor when diagnosed) and started on Sinemet after one year. It was like night and day for me. My stiffness/slowness improved, energy level returned and I felt great for several years. The doctors won't prescribe it for my husband because of his low blood pressure (Sinemet tends to lower BP). He has tried mine with no effect on his symptoms. I would think his Fitbit HR readings should be good for monitoring. Does his HR fluctuate a lot or is it consistently low?
I might try and convince him to try the Sinemet to see whether it helps his stiffness. I think his resting heartbeat is around 30, it does go up when he is walking or exercising. Sorry to hear about your PD x
Dear RachelRob,
The nurses at the MSA Trust are always happy to talk through any symptoms with you. There are certain Red Flags that indicate someone may have MSA, as well as a diagnostic criteria used in clinic. Scans/investigations can be helpful at ruling out other movement disorders. It usually takes several visits to a Neurologist before the picture becomes clearer.
Kind regards,
Samantha. MSA Trust nurse specialist.
I better news, his average resting heartbeat is 54, not sure where I got 30 from. Good job that I checked. And he is going to get his urinary issues looked at on Friday before his consultant appointment next week. Feel like I can relax a little bit now. Thank you again for everyone’s replies.
Consultant appointment yesterday went well, R is being released into the care of the Parkinson’s nurses. The doctor doesn’t expect him to need to take any medication for next 2-3 years. Obviously I am very pleased and relieved. Still unsure about the original consultation with the registrar so imagine that I have gone to town on the research and have got it wrong.
Thank you for keeping us updated. All the very best, Rachel x
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