Hi all, I’ve had symptoms of Ms on and off fo im 30 now but started when I was 22 originally my Dr ran a load of tests and suspected ME but basically gave up after normal ecg etc so I learnt to live with the pain and fatigue.i managed to get on with life and only occasionally was completely wiped out Fast forward to the last year and a half and I have I balance issues,pain, fatigue, difficulty walking, memory problems sometimes and a whole host of other symptoms that have led several Dr’s to presume MS, My Dr sent me to see the neurology consultant who then arranged a Head Mri which came came back clear and then also yesterday I had a nerve conduct test ( the electrode thing) it was the consultant who did this and as that was fine he just turned up round to me and said there is nothing wrong with you and no neurological issues… I know I should probably be happy but I’m not as I feel so stupid as I know there is something wrong and he basically said if I feel bad go back to the Dr’s and get some tablets? I had mentioned that at one point I was given baclofen which helped slightly but as I have good and bad periods and I guess relapses it’s hard to know what to do? I feel it affects my everyday life and now I don’t know where to turn as I can’t see my Dr being that helpful if the consultant doesn’t want to help? Any ideas? Thanks xx
I doubt that the Consultant thinks you’re lying, but their problem is that the clinical data just isn’t there to support an MS diagnosis. If your MRI has come back clear of demyelinating lesions, and the nerve conduction test is clear too, then they will have no choice but to return you to your GP for further help.
I’m slightly surprised they didn’t consider Functional Neurological Disorder. But perhaps the nerve conduction test and the neurological exam would have shown up FND? (Sorry, I don’t know enough about it.) Maybe the physical exam and nerve conduction tests together means there’s no evidence of any neurological disorder at all.
I should see your GP and go through all the tests, results and ultimate referral back to the GP. See what they think about where else to refer you for more help.
Clearly there is something not right with you, it may just take a bit more time and some further investigations to find out what that something is.
Best of luck.
Thanks, that’s a relief I just feel a bit confused to how he just basically said there is nothing wrong with me, I guess it’s going to be a case of wait and see if it develops further, I wish I could feel relieved but I’m still in limbo and can now see it being an uphill struggle to get answers or even a diagnosis. Until then I guess it’s just a case of taking it easy and ignoring the pain and the bad days xx
Hi Bluesparkle and welcome.
I am sorry to read of your experiences with your neurologist and can I please suggest that you keep a diary and a time line of your symptoms. This could really help a consultant with a diagnosis and you might find it interesting as well as helpful for you personally.
I have been in limbo land since January 2017 and my symptoms come and go.
I gave my neurologist a copy of my symptoms at my last appointment a couple of weeks ago and they are now included in my notes.
Please don’t feel you have to suffer in silence. There are a great bunch of people here with many and varied experiences and we are here for the good days and the not so good days.
Thanks I did give him a list of symptoms which he glanced at and then put to one side and then never mentioned again lol so I guess it’s a case of just keeping a diary and hoping at some point I see another consultant x
I must be getting a tad intolerant in my old age. I had already emailed my consultants secretary with my symptoms and I took a copy with me and told him when I gave it to him that I expected him to read it. He was already in my bad books for admitting he forgot to refer me to the neuro-physiotherapist which had been suggested by him and agreed by me early last December.
Also, personally giving him a copy (as well as having your own copy with you at the time) means you both have a point of reference.
I was surprised that my mri appointment came through really quickly. I saw him on the Tuesday and got the appointment letter the same week!