Awaiting diagnosis (of something)

New diagnosis and before diagnosis
1

Hello,

From reading threads on this site, I know I’m not the first to ask these questions, and sure as hell I won’t be the last. I don’t want to put anyone through reading a full list of my symptoms, but they match most of those listed under MS on any medical site. Some I have had on and off for years, but throughout December until now I have had a ‘surge’. I was in hospital for a few days, and am now at home. The symptoms remain but are absolutely improving.

MS has been mentioned by a couple of neurologists so I know it is something being looked into. I am particularly interested in whether anyone reading this has had the symptoms of MS but has gone on to be diagnosed with something else? Having asked that, I probably should list my symptoms:

eye pain and loss of sight occasionally in left eye

pain and numbness in face from ear to jaw to temple (exploded in mid December, diagnosed as a shingles side effect, although never had any evidence of shingles)

pain and tingling numbness in arms and legs, mostly left side

trouble swallowing

Chest pain (i have had this on and off for a decade, its like my ribs have frozen, like there is a metal rod wrapped around my lung, and I cant breathe)

Lost use of legs for a few hours, and got total numbness in feet, they went freezing cold

Balance is terrible!

I was originally diagnosed with an ear infection, then a shingles side effect, then post viral encephalitis Nothing to report from blood tests, lumbar puncture or CT scan. Trouble is, neurologist said that encephalitis should have cleared up very quickly and it has been over a month. I’ve had antibiotics, antivirals and steroids. I am also on gabapentin for an existing chronic pelvic condition, for which they have also diagnosed Neuropathic pain.

So, has anyone experienced these same symptoms? What has the diagnosis been?

i should add that I am not panicking or similar, but am on a quest for more information.

Thanks in advance for any replies.

J

2

Hi Jojo

Well, on the face of it your symptoms could well fit an MS diagnosis. But in saying that, there are other diagnoses which might also fit. Even vitamin deficiencies can look like MS. And without an MRI test showing lesions in the brain, you can’t tell. So I’m a bit surprised if the neurologists suspect MS that they’ve done an LP but not an MRI.

About 80-95% of people with MS have Oligoclonal bands in their cerebrospinal fluid. This is what the Lumbar Puncture tests for among other things (I think perhaps encephalitis as well as meningitis). So the fact that the LP was negative for ‘O’ bands doesn’t mean it’s not MS, just that it’s less likely.

Have a look at McDonald criteria | MS Trust The McDonald Criteria is often used as a diagnostic aid by neurologists.

Essentially, you won’t either be diagnosed with or definitively have ruled out, MS until you’ve had an MRI scan of your brain or maybe your brain and part of your spine.

So, it’s kind of useless to know whether other people have had the same symptoms and been diagnosed with MS (because they will only have done so after a brain MRI showing at least one lesion in a relevant place). And people who’ve had the same symptoms and been diagnosed with something else might not be reading this forum.

All the best for your ongoing testing, I’m sorry if this all sounds a bit negative. I hope that ultimately you won’t get an MS diagnosis. (Or of course, anything else nasty.)

Sue

3

Hi all I’m a 43y female with neuro symptoms for the last year which I feel have slowly progressed, prior to this my first symptom was bbpv (positional head vertigo which lasted 6 months or so then after this I then went on to have balance problems the feeling like I was drunk… anyway recently I’ve had a lumbar puncture that has come back negative but i do have a lesion in my c5/c6 spinal cord which has been described as atypical in which it has been enhancing for the last 4 months. My neuro has said in my last letter that he is to keep an open mind. He said that reviewing my symptoms there is a number of significant different symptons, many of which he doesn’t think relate to the spinal cord issue. I have burning pain down one side and some difficulty with temperature discrimination. I also experience transient electric shock which occur randomly, twitchy muscles pain in buttocks, occasional headaches with nausea and lightheadness pain around my rib cage and a tremor in my right hand… on examination I have very brisk lower limb reflexes with clonus at the ankles and I have bilateral Hoffman’s signs and brisk upper limbs with normal upper power… my question is has anyone else every suffered these symptoms and had a ppms diagnosis. I appreciate any feedback it’s not much fun living In limboland. I am due a mri again in June to see how things are. Kind regards Rebecca

4

Hi Rebecca

Have you got any brain lesions? If not, with a negative LP and just one lesion in the spine, unless your neurologist feels strongly that you could have MS (and waiting 5 months till your next MRI doesn’t sound very much like s/he is), it’s likely that you don’t have MS. Or at least, that your neurologist isn’t too keen on the diagnosis.

You’ve asked whether anyone has been diagnosed with PPMS, was that because you feel if you have any variety of MS it’s primary progressive? Or some other reason?

One of the biggest problems I feel with MS is that virtually any group of neurological symptoms could be made to fit an MS diagnosis. Not that I’m saying your symptoms do or do not sound like MS, it’s impossible for anyone of us here to say that.

But, rather than throwing all your eggs into the MS basket, there are other diagnoses that can account for symptoms. These range from Functional Neurological Disorder to vitamin deficiencies and I’m sure many other diagnoses that I am unaware of.

I hope you find an answer soon. June seems like a very long way away and I can’t imagine living with your symptoms, worrying about neurological disorders for all that time.

Sue

5

Hi Sue Thank you for your prompt response. I guess I’ve read up alot about different disorders that can cause my symptoms and there is alot of confusing and somewhat conflicting info available. I’ve even baffled my neurologist so I don’t know what hope I have of finding out answers. I would of thought that the tests and blood work I’ve had surely would of ruled out most diseases and deficiencies. Given that I’ve been experiencing symptoms for a few years now with very little let ups and slow progression i woundered if it could possibly be ppms. Ive read that you can still have a negative Lp and mainly affects the spinal cord with fewer lesions than other forms of MS? The doctor is probably keeping an open mind because I don’t fit the criteria for anything. And this lesion is unusual that it’s been enhancing for 4 months. I am not particulary anxious just a diagnosis of something would be nice. I’m sure June will come round soon enough and hopefully I’ll get some answers… thankyou again Rebecca.