Last reply 4 months ago
Misdiagnosed

I was diagnosed with MS in Aug following recent episode of optic neuritis, fatigue and previous lhemittes sign going back to 2016, worsening with heat and a brain MRI. Starting to get my head round it when I was seen by a specialist a couple of weeks who has said in his opinion MRI is normal and doesn’t think I do have MS! No idea now what’s going on, no other explanation for my symptoms or what happens now and have to wait 3 months before I can discuss it with him! Anyone else had similar? I feel totally lost, confused and in limbo.

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the β€˜x’.


gijs
8 months ago

Have you had a spine MRI and Lumbar Puncture? They give lots of additional information.
Hang in there, all I can say. I hope the new doctor is right.


mel1477
8 months ago

Thank you. Had c spine which was also normal but no lumbar puncture. I guess it’s just wait and see….


stumbler
8 months ago

@mel1477 , that’s terrible. A diagnosis of MS once given cannot be “ungiven”. If this is the case, you could well have a case of Professional Misconduct.

Given this sequence of events, this specialist should be “bending over backwards” to provide an explanation of your symptoms.

I’d discuss this unfortunate situation with the Patients Advice and Liaison Service (PALS) team at your hospital and see whether they can get things moving faster for you.


fxms
8 months ago

@mel1477 as far as I know, it is very difficult to diagnose MS without a lumbar puncture or any other para-clinical input. Because I had a slooooooow diagnosis, my Neuro explained to me that she always requires the following tests:

1) A clinical presentation (attacks or evidence of insidious progression)

2) Lots of blood tests done to discard conditions that could mimic MS

3) An MRI of the brain and spinal cord (with lesions characteristic of MS)

4) Evoked Potentials (visual, auditory, somatosensory; showing evidence of disturbance in neuro-conduction)

5) A lumbar puncture to study immunoproteins in cerebrospinal fluid (mainly looking for unpaired oligoclonal bands)

Please, be aware that not all of these are needed at the same time for an MS diagnosis…. its just a list of all the tests I needed to have my diagnosis.

All the best!


potter
8 months ago

I had a GP that wouldn’t give me a referral to a neuro for years even though I had symptoms and a family history of MS. I finally got a referral because he thought I had damaged a nerve in my elbow. I said to him maybe the neuro will test me for MS. My GP said even if you have it they can’t do anything for you. I believe he knew all along I had MS and thought treatment was useless. This specialist might have some outdated ideas like my GP. I was just diagnosed with a MRI, he said with the multiple number of lesions and family history no other tests were needed. I wouldn’t jump to the conclusion you were misdiagnosed. Potter


grandma
8 months ago

You are now in what we call ‘limboland’the worst place to be. We don’t wish a dxd of ms on anyone, but sometimes it’s a relief because you have all these weird symptoms and you think you are going nuts! Please keep posting, were always here to listen, there’s lots of info on here if required. We don’t judge, and someone will nearly always have the answer.😍


mel1477
4 months ago

Just been for my second opinion and confirmed RRMS. Oddly relieved…. wish it wasn’t the case but at least I have a diagnosis and my symptoms aren’t in my imagination! Thanks everyone for comments it’s so good to know that this forum is here!


grandma
4 months ago

Dear @ mel1477 Pleased that you’ve finally got the diagnosis that none of us would wish on anyone! Relief is quite common, but now you can start asking us questions and hopefully someone here will be able to helpπŸ€™πŸ˜œπŸ₯Š


highlander
4 months ago

@mel1477
I kinda know how you feel, relived your not going mad and a bit anxious about where it’s going to take you.
Train hard and fight easy.
However that comes.
Keep smiling


stumbler
4 months ago

@mel1477 , now give yourself some time to reflect and consider what this means to you. This isn’t a race. πŸ˜‰


lol84
4 months ago

Hi @mel1477, sorry about your diagnosis, but at least you know now. The MS Nurses are so so helpful and are a fountain of knowledge. Make sure you ask them lots of questions & do your research (DMT’s leaflet & on MS Trust & MS Society websites). Good luck & keep in touch on here about what you decide. Kind regards, Laura

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.