Neutrino
Member
- Joined
- Jul 16, 2021
- Messages
- 16
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- UK
Hey Everyone.
As ever, appreciate any kind of entity opening its doors to offer advice to essentially strangers. SO, thanks for reading this. Ill keep it brief, and hopefully its not the typical anxiety protocol.
For reference im 38 and male. Working backwards. I currently have a diagnosis of probable Parkinsons, with possible Multiple System Atrophy (im sure your aware MSA cant be 100% diagnosed until post mortem). Of course, something like MSA hanging over me has been something to get used to. However, have some niggling feelings that things don't quite add up. Although pretty much anything else could be better than MSA.
The reason for the possible MSA is the Parkinsons diagnosis is given as atypical, as i presented with non typical symptoms. With a number lining up with MSA. Its very early stages, i only started noticing something wasn't right at Christmas, was under the care of a movement specialist neurologist from March, and had the probable diagnosis about 6 weeks ago. In that time have had spinal and brain MRI's plus DATScan. The datscan was borderline for initial loss of receptors. So at the moment the diagnosis is on clinical symptoms, and im to be reviewed again with another DATscan in January to see how fast its progressing (which will give a better indication if standard Parkinsons or MSA).
Anyway, im sure your realising there is a BUT coming. So since my last Neurologist appointment i now have fasciculations + cramps in my lower legs (i already had clinical weakness in arms and legs, but currently attributed to Parkinson's). You do get cramps (Dystonia) with Parkinson's, but you don't get fasciculations. I also saw my GP this week for something less troublesome, but she noted atrophy of my hands and feet. I didn't bring up ALS, and she herself just assumed again to do with Parkinson's. But again, Atrophy is not common in Parkinson's until very late stage when immobile.
Just to add, the atypical symptoms i presented with where heart rate control, inappropriate sinus tachycardia and premature ventricular contractions. I can get up to 15 premature beats in a row, and my resting heart rate varies a lot, upto 130bpm. Plus weak, tight chest muscles. Now, those are all definitely possibilities in MSA, but im aware they can be for ALS as well.
So i have to wrap this up into a question don't i! Essentially i have the clinical lead for Parkinson's as my Neuro, a very good movement specialist. Quite confident its atypical Parkinson's. But symptoms have progressed since last consultation. So i am contemplating booking another appointment before the next January set of scans. But, should i get an opinion from a musculoskeletal neurologist, that may have better insight to what's going on. Or stick with current one and bring up ALS/concerns around current diagnosis, and ask for EMG etc (i suspect there is also the option of type 4 spinal muscular atrophy, especially as tremors are common in that).
In summary the things that led me here, over the current diagnosis:
So yeah, that's about it, i generally don't like making a fuss, and firmly believe my neurologist knows his stuff. But, thought id get some feedback on the above to either help me make the decision to go back to him with it, or to just go with the flow and see how things go over the next 6 months.
Thanks in advance.
As ever, appreciate any kind of entity opening its doors to offer advice to essentially strangers. SO, thanks for reading this. Ill keep it brief, and hopefully its not the typical anxiety protocol.
For reference im 38 and male. Working backwards. I currently have a diagnosis of probable Parkinsons, with possible Multiple System Atrophy (im sure your aware MSA cant be 100% diagnosed until post mortem). Of course, something like MSA hanging over me has been something to get used to. However, have some niggling feelings that things don't quite add up. Although pretty much anything else could be better than MSA.
The reason for the possible MSA is the Parkinsons diagnosis is given as atypical, as i presented with non typical symptoms. With a number lining up with MSA. Its very early stages, i only started noticing something wasn't right at Christmas, was under the care of a movement specialist neurologist from March, and had the probable diagnosis about 6 weeks ago. In that time have had spinal and brain MRI's plus DATScan. The datscan was borderline for initial loss of receptors. So at the moment the diagnosis is on clinical symptoms, and im to be reviewed again with another DATscan in January to see how fast its progressing (which will give a better indication if standard Parkinsons or MSA).
Anyway, im sure your realising there is a BUT coming. So since my last Neurologist appointment i now have fasciculations + cramps in my lower legs (i already had clinical weakness in arms and legs, but currently attributed to Parkinson's). You do get cramps (Dystonia) with Parkinson's, but you don't get fasciculations. I also saw my GP this week for something less troublesome, but she noted atrophy of my hands and feet. I didn't bring up ALS, and she herself just assumed again to do with Parkinson's. But again, Atrophy is not common in Parkinson's until very late stage when immobile.
Just to add, the atypical symptoms i presented with where heart rate control, inappropriate sinus tachycardia and premature ventricular contractions. I can get up to 15 premature beats in a row, and my resting heart rate varies a lot, upto 130bpm. Plus weak, tight chest muscles. Now, those are all definitely possibilities in MSA, but im aware they can be for ALS as well.
So i have to wrap this up into a question don't i! Essentially i have the clinical lead for Parkinson's as my Neuro, a very good movement specialist. Quite confident its atypical Parkinson's. But symptoms have progressed since last consultation. So i am contemplating booking another appointment before the next January set of scans. But, should i get an opinion from a musculoskeletal neurologist, that may have better insight to what's going on. Or stick with current one and bring up ALS/concerns around current diagnosis, and ask for EMG etc (i suspect there is also the option of type 4 spinal muscular atrophy, especially as tremors are common in that).
In summary the things that led me here, over the current diagnosis:
- Rigidity/clinical weakness first appearing around 6 months ago in hands
- Moved to upper arms around 4 months ago
- Feet about 2 months ago
- In the past 6 weeks fasciculations and cramps in lower legs
- Most recent, atrophy noted in the hands
- Everything is worse when its colder
- Now starting to not be able to do things i used to, silly things like i cant wear jeans with buttons anymore as cant do them up
- I have lost about 2 stone in the past year, but 0.5st of that is in the last 6 weeks, and i have been increasing my calorie intake to try and gain weight, with no luck
- No anxiety - weird i know, but i have a stress laden job, and am very good at taking things as they come
- Action/postural, bilateral tremor (but no resting tremor) - mostly on extension or when forcing the muscles
- Bradykinesia
- Synkinesis
- Cogwheel rigidity (apparently pretty much only appears in Parkinson's/MSA) - muscles cause a ratcheting affect when twisting
- Initial, although borderline abnormality on the dopamine receptors in a DATscan - have seen that there can be extrapyramidal involvement in ALS, and often only a hint of it in Datscans
So yeah, that's about it, i generally don't like making a fuss, and firmly believe my neurologist knows his stuff. But, thought id get some feedback on the above to either help me make the decision to go back to him with it, or to just go with the flow and see how things go over the next 6 months.
Thanks in advance.