What if DX is wrong?

Hi everyone, I think I’m being silly. I was dx’d in 2000 and last year was moved onto secondary progressive. I get really bad rigidity, don’t move without a four wheel rollator and two sticks for very short distances, very, very wobbly, toees on right han foot clawing badly and generally deteriorating in mobility. This has happend recently (2 months) and I kept thinking what were the symptoms of Parkinsons. I read on the Internet today about Parkinsons and the symptoms are alot like MS and rigidity was one of them.I’m now wondering if I’ve been mis-diagnosed with MS when it should be Parkinsons? Like I say, I think I’m being silly. What do you think? Linda x

Allo Linda.

it is all too easy for any of us to question our dx. You were dx`d quite a while ago, so my feeling is that you could ring your MS nurse and tell her of your concern. Or when is your next appointment with your neuro? If it is upcoming then you could ask him/her.

Are you on any meds for the spasticity (rigidty)? Baclofen would probaby help, but too high a dose and you could have falls.

Try not to let your mind run away with you, if you can…yeh, I know how an over active mind can be, from personal experience hun.

luv Pollx

Hi Linda,

MS is notoriously hard to diagnose, and like all diagnoses, can sometimes be wrong. However, I think confusion between MS and Parkinsons would be such an elementary mistake that it’s unlikely to be one any qualified or experienced neurologist would make. They might seem superficially similar to us (perhaps not surprisingly, as they’re both brain diseases), but I don’t think they’d be easily confused by a specialist neurologist. I can’t tell you offhand what the exact differences are, but I don’t think it’s that hard for a properly qualified person to tell which is which.

As “rigidity” - more often referred to as spasticity - is a very common problem with MS, what leads you to feel Parkinsons would be a better explanation for your symptoms? You haven’t described anything that doesn’t sound a lot like things other posters have said.

As far as I know, the two diseases are sufficently different that Parkinsons is not even on the list of alternatives to consider, when diagnosing MS.

I’ve just looked up a table of 100 conditions that can sometimes be mistaken for MS, and guess what? Parkinsons isn’t on there!

The link is here, if you want to have a look. You need to scroll down to Table 7. But please don’t scare yourself thinking you have one of the others.

https://www.neurology.wisc.edu/publications/2007/neuro_2.pdf

Interestingly, number 100 on the list of things that can sometimes be mistaken for MS is that the patient is, in fact, normal! So the authors actually think there’s more chance of a healthy person being diagnosed with MS, than someone whose real problem was Parkinsons.

The only place Parkinsons is even mentioned in the whole paper is to say that although, like MS, there’s no standard test, unlike MS there’s usually very little doubt about the diagnosis. So there’s not even a hint the two are ever confused.

Tina

x

Hi Tina.

I clicked on the link you suggested…and there I found (quite a way down the list) HSP…the suspect for my condition…thanks.

I hope your reply helped Linda.

pollx

Hi -

My dad has Parkinson’s, I have some ms-type symptoms and lesions (but not full dx). Parkinsons & MS are both neurological conditions, so they both involve neurological symptoms - but they are really quite different in lots of ways.

Major differences are:

  1. MS symptoms are caused by demyelinating lesions in the brain and spinal cord, whilst Parkinsons symptoms are caused by reduced dopamine production in the brain.

  2. MRI scans that show demyelination would point to MS, not Parkinsons

  3. Parkinson’s follows a progressive path right from the start. Although initial symptoms of PD are often quite manageable with medications, there are no ‘remissions’ in PD. So if the start of your condition was characterised by relapses and remissions, this would not fit in with Parkinson’s either.

  4. Whilst some symptoms of Parkinsons and MS overlap (muscle stiffness, rigidity, tremmor, fatigue), there are differences. Pain in Parkinsons is not neuropathic, but can involve muscular cramping, - it is not usually the main symptom . Tremmor is usually much more pronounced in PD than in MS. Parkinsons often effects muscles involved in speech, so speech can become very soft, quiet and slurred. It also effects muscles involved in facial expressions - the face can take on a ‘mask-like’ appearance. Handwriting may become excessively small, gait is usually effected, with characteristic stooped posture and small shuffling steps, and there may be involuntary roling of finger and thumbs (known as ‘pill-rolling sign’). I cannot imagine that such symptoms could have gone unnoticed by your neuroogist over 14 years ; I’m sure they would have spotted it.

MS and parkinsons are both neurological conditions and therefore both have neuro symptoms - so there are definitely some overlaps and similarities in some of the symptoms - it is easy to see why you would consider the possibility of misdiagnosis. But also there are big differenes too, in symptoms and also in mri / other diagnostic tests. I honestly think it very very unlikely you’ve been misdiagnosed.

Hope this helps put your mind at rest a bit. x

Hi Linda

Read the replies from Tina and Anon carefully.
I would put the similarities between Parkinsons and MS at around 85% - this is based on the fact that my wife has Parkinsons and I am the one with MS. Now:

MS is Dx-ed after a bunch of tests, and by following the McDonald Criteria.

Parkinsons is Dx-ed by the response to one of the Dopamine based drugs (usually Sinemet or Medopar). There may be a couple of tests (MRI, nerve conduction) just to make sure that it is not something else.

Of course, eveyone knows about Parkinsons and tremor. But my wife only gets (esssential) tremor when under extreme stress or when very cold - I have(intentional) tremor all the time.

It is unlikely that you have been mis-diagnosed, but you can always ask the neurologist or MS nurse -don’t mention Dr Google, but you can say that Parkinsons has been in the press so much lately that you are wondering …

Geoff

Hi everyone, as I said I was being silly but gave my historic diagnosis some thought. It wouldn’t have made any difference what the dx was as I’ve been living with this for 15 years and it is only in the last 12 months that it has really caught up. Thanks for all your replies, made very interesting reading. It’s the rigidity that is really to getting me, the stiffness is very over the top and when it happens, which is getting more and more frequent, it is like I become a plank of wood and cannot move (the Baclofen does slightly relieve it but my dosage is now 50mls a day and I really don’t like taking tablets, like most of us). I obviously latched on very quickly to the likeness of PD and MS with the symptom of rigidity and have taken on board the fact that it is very detrimental to keep googling symptoms on the Internet (as Tina has said on another thread) and at least on this site you can relate to each other because we are all dealing with the same things. I know I was being silly and am glad everyone has confirmed that. No doubt I’ll need to thread about other stuff as so much is happening to me at the moment so please bear with me. Thanks Linda x

Hi again, Linda

The thing that you need to watch out for now is the right toes going “clawlike”.

  • If it gets to the point where a lot of your weight goes onto the ends of the toes - you could be on the way to corns.
  • The toes curling can affect your stability. You need to see a podiatrist/chiropodist ASAP. These folk can make simple supports to go under the central three toes, so as to reduce the clawing.
  • The other problem with claw toes is that the toes come together laterally. Pressing against each other, they can raise sore places, broken skin, etc. You can do something about this yourself with a bit of stiff foam cut into 1" cubes and the cubes then being put between the toes.

Never mind what the cause is, get your feet looked at by a professional - it might just make your walking a lot easier.

Geoff