Forum

Possible MS and struggling with being in limbo

Hi all. I possibly have MS but nothing has been confirmed yet and im really struggling with being in limbo. I had symptoms over a year ago I had tingles that ran down a part of my neck and was referred to the neurologist. Fast forward a year and I was having more symptoms with tingles up my legs and was getting dizzy which knocked me off my feet for a while. After going back to the Dr’s I was kindly informed i should have gone back to the neurologist but nobody had been in contact with me. After going back to neurologist over a year after my initial MRI he told me the MRI showed inflammation on parts of my brain and referred me for another MRI a lumber puncture and evoked potential tests as well as prescribing pregablin. I have had all three tests done around a month ago now and have to wait till the end of June for my follow up appointment and my symptoms haven’t subsided they have just gotten worse where I ow have tingles in my hands and tightness in my legs. The neurologist had merely off the cuff mentioned MS but had not said that’s what he thought i had. I had worked out that’s what he thought i had off the professionals I have been to see such as through the EPT tests etc and one of the GPs had mentioned it to me but was actually confirmed by my actual GP on Friday that that’s what the neurologist thinks I have as she told me what was found on the MRI was consistent with MS but he could not diagnose it off just one MRI which is why i’ve had other tests and another MRI done. She told me she was going to write to the neurologist to see if there was anyway we can hurry an appointment up or at least on relaying the results back to me either by releasing my results to the GP or by having a telephone consultation as the neurologist im visiting is part of a different trust so they don’t have any access to my results. Has anybody else had to wait such a long time for a diagnosis and if so how do you cope? I feel so frustrated with it all as i had to wait a whole year to find out there was actual something found on my MRI originally and only found out as i kept going back to the DR’s with more symptoms. I feel my neurologist doesn’t seem to even seem to want to be straight with me. But also very frustrated its so long winded as im aware there are medications available that can help slow the progression down if that’s what it is but I cant access any help for another couple of months at least. Sorry for the whinge but im really down and tbh really scared as the symptoms are getting worse but any sort of help still seems to be quite far away

I had my LP on 19th May and am chasing it up at the moment, i was diagnosed with a Stroke in Jan 17 and thought the tinglying, dizziness, fatigue etc were post Stroke symptoms, and then found out in jan when i was sufferuing really bad headaches that it could be MS, it is really frustrating i feel like i cant plan anything in case it gets worse or i get a last minute appointment. At this stage i just want to know either way waiting all the time not knowing and getting no help is really frustrating

Oh Elljay (and Thersb)

It is by no means uncommon for people to be in limbo for quite a long time.

Elljay, it does seem you’ve been given the run around. Somehow messages didn’t get to where they needed to be and you’ve been left hanging for all this time. And to wait until the end of June for a follow up appointment seems very unfair. Why not try phoning the neurologists secretary and asking if there’s any chance of a quicker appointment. If you explain that you’ve been left dangling (politely of course) for over a year, it’s possible there could be a case of you being slotted in somewhere? If that’s not possible, then contact Patient Advice and Liaison Services (aka PALS) and ask for their help.

And Thersb, what rotten luck, to have what’s deemed to be a stroke and then be told, ‘oops maybe not’, a year later. I really hope you don’t have a long wait to find out what the true state of affairs is.

Best of luck to you both.

Sue