Alternative Diagnosis?

Morning all :slight_smile:

I notice from reading the posts on this forum that many of you have been waiting for a diagnosis for a long while. I suppose I have as well in that my symptoms go back about 7 years, but this is the first time I’ve been seriously investigated for MS. (I had a couple of head MRIs in the past, but nothing more).

I was wondering, those of you that have had inconclusive investigations, what happens now? Have you been offered possible alternative diagnoses? Or is it just a case of wait and see it if gets any worse and will investigate some more?

I’m awaiting MRIs and a lumbar puncture, and right now my worst fear is that they will all come back clear and I will be back to square one again!

Kaz xxx

With my first 2 episodes that’s exactly what happened. The MRI and LP was clear so discharged and told 1st time Migrainous phenomenon and 2nd time stress! So was back to square 1 x

Hi Kit. But you’re back to being investigated for MS again now? xxx

Yup. In fact looks like I will be being admitted today as the neuro doesn’t have any appointments for weeks. Just waiting on a call from duty GP after morning surgery x

Hi Kaz, it’s very difficult if the MRI and LP are clear but the symptoms continue.

Naturally they look at anything else that could be causing the problems… but if they eliminate everything else the most they can do is suggest another MRI in about a year to see if lesions are then showing.

Sometimes they will dx ME/CFS which at least is a dx to be going on with (I had that dx for 2 years before an MS dx).

Occasionally when someone has MS symptoms but clear MRI and LP… and they have eliminated everything else… they will dx ‘possible’ or ‘probable’ MS.

Try not to worry for now (easier said than done I know!) … wait and see what your test results show.

Cross bridges when you come to them… and the best bit of advice is to take it one day at a time.

I hope you get some definite answers very soon,

Pat x

Thank you Pat :slight_smile: That is really helpful!

Kaz xxx

Good luck Kit!! I hope it’s helpful :slight_smile:

Kaz xx

Thanks Kaz. I’m really nervous now waiting for the call. I think more that they will decide not to admit me after all this x

Hi Kaz,

I’m 6 and a half years undx’d now. Still under investigation. Had negative MRI’s and LP. I have now been transferred to another neuro who is doing a more thourough investigation. I’m currently waiting for my results form a whole of spine with and without contrast MRI, thats something I’ve not had before.

I have had other dx’s in the past… 2008 ME/CFS (never agreed with that) 2 years ago spastic paraparesis, and last year chronic migraines!! But I’m still convinced it’s MS. And as strange as it sounds, and something that only us limbo’ers will understand is I am hoping something shows up on this scan!!

Best of luck with your MRI and LP


It’s been 6 years since my first episode. I know what you mean about hoping something shows up x

Hi, the first neurologist that I saw reckons that my problem is to do with raditaion treatment that I had for hodgkins lymphoma in 1990 when I was 25. The second neuro seems to think progressive MS but my brain scan and LP remain clear. Radiation damage is usually only a slight risk when the radiation is targeted at a tumour on the cord. In my case the ratiation may have been misdirected.

Moyna x

Hi Kaz, my current diagnosis is just “stress” which it SO isn’t so have been referred to another neuro for a 2nd opinion. One thing that seems to have almost the exact same symptoms as MS is Fibromyalgia. As my mother had it and it is very likely to run in families, especially women, i’m thinking now that if its not MS then it will be FM. I don’t know if your tests have looked into that at all but its worth asking about. This “limbo” is just PANTS isn’t it!!?? xx

It sure is! X

Thank you all!! It’s really helpful to get input from people who understand!! It seems there are dozens of diseases out there that mimic MS but few ways to definitively diagnose. Good luck to all of you! Keep me updated with how you all get on xxx

Hi. I have had odd symptons for a good few years that I put down to having an inflammatory disease in my 20’s. I have had doctor tests, blood tests, neuro tests and they all said I seemed fine and looked great. I Insisted on an MRI which I had ealier today, dreaded it but the radiographer was possibly one of the most comfortable people I have ever met. It makes all the difference. Anyways waiting for results, early next week. Was given the cd copy of my brain result which I promptly hid in a drawer, let the professionals deal with that one. No need to keep it in my handbag as a constant reminder, symptons are reminder enough! Good luck all.