Hi all, is anybody aware of somebody going down the diagnosis of ms only to find it turned out to be Parkinson’s disease?
No, not heard of that one - except as a hypothetical. Last time it was discussed, we didn’t reckon any competent neurologist would confuse the two.
Of course, that doesn’t mean you (if it’s you we’re talking about) couldn’t have an incompetent neurologist. Perhaps it might be an incorrect initial guess? But it’s difficult to see how exhaustive scanning and testing would have failed to distinguish between the two.
I think the two diseases do have some relation, though. Mutations on the same chromosome (“neighbours”, if you like) influence the chances of MS and Parkinson’s. Not sure this is relevant to your question, but interesting anyway. Might be relevant if your reason for asking was that someone else in the family has Parkinson’s.
thanks for Discussing Anita, when I was first referred to Neurologist I did not realise it was becuase hospital admintance Doctor felt it was MS. the Neuro seemed only interested in the fact that there was no MS in my family so ruled it out after further clear MRI, but he never discussed with me any other Neurological diseases in my family. I have since found out my Aunt has had Parkinsons for along time and now my father is being tested for it to. Coupled with my odd symptom of suddenly shutting down for about 30 sec and going blank along with all the stiffness and pain i am getting from my feet upto my knees in the evening. It feels as if somebody has stitched and elastic band from my waist up under my left arm and to the end of my fingers and if I pull anything it pings back and if I hold anything, I have to hold close to my chest and hold with item with my whole arm. If I open a door I loose grip and my arm pings back into what ever is behind, its only been walls but terrifiend incase I hit somebody. so just wondering if I have been barking up the wrond tree? I am not particular good and talking about symptoms so to be fair I may not have told Neuro everything. At least my blurred vision has subsidied now. Still get the burning feeling on top of my hand as if I had scolded it from the steam of a kettle. Any opinions would be appreciated. Catherine xx
Hi again Catherine,
Although no mistake is absolutely impossible, I do think it would be unlikely for the two to be confused.
Then again, I initially read your post as referring to someone who was already diagnosed with MS, but had later gone on to discover it was Parkinson’s. I haven’t met any cases like that on this forum, and I’ve been here a few years now.
If you’re not diagnosed at all, then I could imagine MS and Parkinson’s both being possible contenders in the early stages of investigation, but that findings would very soon favour one or the other. Although it can cluster in families, MS is not hereditary - if that doesn’t sound like a complete contradiction! So the majority of cases - about four out of five - have no affected relative. But one in five - which is higher than chance - DO. This shows us that although not hereditary, there is a genetic component. Having an affected relative slightly increases the odds that someone’s symptoms ARE caused by MS. But as most people with MS have no affected relatives, family history can’t be used to rule it out.
A clear MRI can’t absolutely rule it out, either, but does make it less likely.
If you haven’t 'til now, I think you do need to make a conscious effort to be as clear as possible with the neuro about symptoms. It’s not the time to be coy. Why do you think you’ve held back? Is it because some of the symptoms are embarrassing, or just because you don’t like to be seen to be “making a fuss”? Or is it even that you mean to mention things, but seem to forget once you’re in there? If it’s the latter, making a bullet-point list before you go could be a good idea. Not to hand over without explanation, but as a prompt for you, so as not to leave out anything important.
Your 30s “absences” don’t sound typical of MS - more like some kind of brief seizure. Although others here have mentioned something similar, I don’t think they were diagnosed MSers.
I’ve no idea whether this would be more typical of Parkinson’s, as I don’t know much about that, despite having it in the family too. A great aunt had it, but she died long ago, when I was just a child. I was old enough to understand she had it, and she was obviously disabled when I knew her, but I don’t know about symptoms beyond those anyone could see, such as whether she ever has seizures.
As I say, there’s some evidence of a genetic link - another auntie (sister of the one with Parkinson’s) had MS, so personally I don’t think it’s coincidence we’ve now had three cases of neuro issues in the family. The neuro who assessed me for DMDs eagerly wrote all this down, so I don’t think she thought it was coincidence either. I know that doesn’t particularly help either way. Existing Parkinson’s disease in the family might increase the likelihood you have that, but might raise the MS risk too.
Where have things been left at the moment? Are you awaiting further tests?
The only experience I have is that my dad has parkinsons and as far as I know he was never considered to have ms. He had an intention tremor and this was very noticeable on writing, his gait altered to a shuffling gait and he stumbled but more due to shuffling than balance he also had “cogwheeling” to his shoulder on one side. X
thanks for feedback, its really appreciated.
I have had the Evoked Potential test which was normal but my neuro wants me to move to CSF investigation and have the Lumber puncture, appt made for 18th july. I am very apprehensive of having this, having had one back in the 70’s for suspected menigitis when I was a child. Perhaps I was looking for other alternative’s. I am already diagnosed with AF and on warefarin so have to move to injections the week before LP. I have lost most of my hearing in my right ear after and episode in 2008. I do get buzzing in my right foot also. I also have trapped nerves in my neck along with spondilitis in lower spine, which is another reason I am reluctant to have LP.
This is a real good one, Medion.
One the one hand:
I have RRMS (official Dx) and my wife has Parkinsons.
We come under two different hospitals.
About 75% - 80% of our symptoms are the same.
MS was diagnosed on the basis of a lot of tests, including MRI (lesions found) and LP (oligoclonal bands found).
Parkinsons was diagnosed on the basis of response to a Dopamine based medication for Parkinsons (MRI and nerve function tests were normal).
I have an intention tremor (left hand.arm) all the time, my wife only shows an essential tremor when very cold or under great stress).
It is generally assumed that MS is due to the de-myelination of the nerve fibres, while Parkinsons is due to a reduction in the secretion of a neuro-transmitter chemical. So, they must be different mustn’t they?
thanks for sharing above, its shining a light on simularities aswell as differences.
You both have your challenges? take care
sorry mean’t to add, I will keep you all posted and I will approach Neuro in writing to see how he will respond to my query on this.
While I was in hospital undergoing tests due to the sudden onset of strange symptoms I kept trying to second guess the diagnosis. I then remembered that my estranged father had been diagnosed with mild Parkinson’s so I mentioned this to the consultant who dismissed it immediately saying that my results so far completely ruled it out. I am gathered from that they can identify Parkinson’s fairly easily from some of the initial tests.
Interesting thread as I have recently seen my neurologist a few weeks ago and she has recommended I start on Sinemet and then go back in a few months for another check up.
DoctorGeoff, my guess is that she thinks I have Parkinson’s rather than MS and is going to see what happens with the medication? I would appreciate your thoughts about being put on this.
It’s a long process and limboland is a large place to explore!
Sinemet. Yes, that is the one they used on my wife. The dose has been upped a couple of times since (but it is nowhere near maximum). By any chance (my turn to guess, now) were/are you having mild stability problems? Probable dose will be “Half Sinemet 25/100” three times daily. There is an alternative to Sinemet, but it is the most commonly used one.
So, fair bet, if Sinemet works then you probably get a Dx of Parkinsons. The good thing is that while Sinemet is not a cure, it can act to hold the disease where it is now - the earlier it is Dx-ed, the longer you go without any major effects.
Thank your for your reply, really appreciated.
I only had one big fall where I completely slipped and fell flat on to my back. I have been tripping going upstairs and stubbing my right foot when walking on flat surfaces . I would say mainly steady but have this constant buzzing and weakness in my legs.
I have always enjoyed sport such as squash and badminton but at the moment I am too stiff which is very frustrating.
It will be interesting to see if the Sinemet kicks in or not over the next few weeks. I will report back with updates.
updates would be appreciated spuddy, and I hope it works for you.
Quick update, I have noticed the cramp in my hands and feet have almost gone. They come back before my next tablet is due and on the startet 62.5 (3 per day). My dose is to be tweaked to 110 (3 per day) soon. The general stiffness has also decreased. The tiredness is still there though and was hoping this would lift. Perhaps a little longer with the tablets will help.
I was getting pins and needles in my arm like a blood pressure cuff and this has also eased off . It is there but only in the background and less frequently Previously it stopped me writing or using the keyboard but not now which is great.
@ DoctorGeoff - Does this sound like a similar path? Also, does your wife dribble and swallow the wrong way? This happens to me and I find it really annoying as I don’t realise I am dribbling. The swallowing the wrong way has calmed down since the Sinemet.
Thanks in advance.
@ spuddy - Yes, it does sound familiar, unfortunately. But the bright side is that the Sinemet will likely hold your condition fairly stable for a good long time (on average). What you should watch out for as soon as the dose is increased is that you could fall asleep very easily in the daytime. It may not happen at all - but when it happens in mid sentence it can be a bit scary. I was very glad that my wife does not drive.
Just in case you have not been shown this, there is a simple exercise where you touch the tip of each finger in turn to your thumb, and then do it in reverse, Start slowly, and then go faster. With each hand!
If your Neuro, or Neuro Nurse suggests seeing a speech therapist - take them up on it, They have lots of exercises for the lips that have nothing to do with speech, but could help with the swallowing,
thanks for putting an update on spuddy, I appreciate hearing how you are getting on. I see the Nuero on the 15th Aug which gives me time to build the courage up to challenge him as I am sure he did not ask at anytime about any other Nuero history in my family,