Forum

Undiagnosed / misdiagnosed Alarming

Having a read through this Forum Last night I was rather alarmed at the sheer amount of people (felt like the majority) which had symptoms exactly as those MS causes, but after completing EMG, MRI, Lumbar Punctures they still haven’t been diagnosed with anything.

My symptoms as to date;

Painless Muscle twitching ( on and off last 6 years ). The twitching is constant in both feet now, and happens randoly throughout body.

Burning sensation in various parts of my body, and sensitive after touching/ scratch.

Miscellaneous cramps through legs, muscular pain throughout body. Worse in right arm and middle finger. Pain is increased or decreased depending on position of my arm and movement.

Involuntary Tremors.

Felling of shaking but not actually shaking/ sometimes feeling of vibrating (most when waking up).

(All symptoms are worse when laying down)

I recently went to see a well regarded Nuro, even if you search this forum you will find nothing but good reviews on them. They did the usual neurological exam after hearing my symptoms. Strength, reflexes, eyes, felt muscles, checked for feeling.

They said I displayed no abnormalities, and they do not think I have any disease. In fact if I did I would be in a bad way by now, on top of that I am not the age for it (26) we all know age nothing to do with it. He said he thought I had BFS considering my mum complains of such muscle twitches etc. I do read BFS can cause all these symptoms, but how rare is that!!?

I requested that I still do all the testing required because I know you cannot just tell from physical exam even though they are a leading expert.

So I am off to do EMG and MRI of the Brian and spine, But I am extremely concerned that my symptoms will get worse and without any diagnosis I will not receive the proper treatment if I need it.

Thanks for listening.

Hi,

try not to worry, easier said than done I know.

Your Neuro will want you to have various tests done if he even just suspects MS…but so far it seems he doesn’t.

MS mimics many other diseases, that’s why a dx can take a long time, lots of other things to eliminate first.

Hopefully once your Neuro has the results of the MRI he’ll talk to you again.

Rosina

Hey, That’s the thing. My Nuro seemed pretty certain it was MS or anything else. I had to request these test . It’s all private medical care so I’ll update my post in a few weeks max two months.

Hello

I’m a bit confused, have you seen two different neurologists? On the one hand you’ve said the ‘well regarded neuro’ did a physical exam and couldn’t see any sign leading them to think MS or any other diagnosis was likely. Then you’ve said your neuro seemed pretty certain it was MS.

You should be aware that many people have a number of symptoms that may appear to fit the criteria for MS, but not have MS. This is because many, many symptoms also overlap other diagnoses.

If you have a brain and spine MRI and have no demyelinating lesions, then you would correctly not be diagnosed with MS. If the evidence isn’t there, then you don’t have MS. The MRI may also rule out other causes for your symptoms. In which case, it’s possible that a diagnosis of BFS could be correct.

Hopefully you’ll soon have your MRI and get the results soon after that.

Sue

Apologies if there has been confusion in my post.

I have seen two Neurologist one was 5 years ago, she seemed to think I was fine after blood test and physical exam etc.

The well “regarded” Nuro was a few days ago. They seemed to think I was fine also, but given these new symptoms I am going to do EMG and MRI and like you say the MRI will be an eliminating factor.

So I will wait until then.

Thanks for you guys replies.