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 Iāve 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?
Iām 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!
With my first 2 episodes thatās 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
Yup. In fact looks like I will be being admitted today as the neuro doesnāt have any appointments for weeks. Just waiting on a call from duty GP after morning surgery x
Hi Kaz, itās very difficult if the MRI and LP are clear but the symptoms continue.
Naturally they look at anything else that could be causing the problemsā¦ 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 LPā¦ and they have eliminated everything elseā¦ they will dx āpossibleā or āprobableā MS.
Try not to worry for now (easier said than done I know!) ā¦ wait and see what your test results show.
Cross bridges when you come to themā¦ and the best bit of advice is to take it one day at a time.
Iām 6 and a half years undxād now. Still under investigation. Had negative MRIās and LP. I have now been transferred to another neuro who is doing a more thourough investigation. Iām currently waiting for my results form a whole of spine with and without contrast MRI, thats something Iāve not had before.
I have had other dxās in the pastā¦ 2008 ME/CFS (never agreed with that) 2 years ago spastic paraparesis, and last year chronic migraines!! But Iām still convinced itās MS. And as strange as it sounds, and something that only us limboāers will understand is I am hoping something shows up on this scan!!
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.
Hi Kaz, my current diagnosis is just āstressā which it SO isnāt 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, iām thinking now that if its not MS then it will be FM. I donāt know if your tests have looked into that at all but its worth asking about. This ālimboā is just PANTS isnāt it!!?? xx
Thank you all!! Itās 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 20ās. 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.
