MS Society UK | Forum

Could it be?

As someone approaching the age of sixty, I have struggled with pain for the whole of my adult life. I have diagnoses of fibromyalgia, hereditary neuropathy with a liability to pressure palsies (don’t ask), dementia, bursitis in my hip, breathlessness, atrial flutter … the list goes on and on.
I read an article (social media isn’t always bad) about electric shock sensation. It seemed related to a fairly spectacular session I had experienced recently. For the first time, I started reading about MS. Looking at the symptom list, I not only have them all, but the patterns of development seem to fit.
I contacted my GP, to discuss it and I am now waiting for a rapid access neurology appointment. I am not sure that I have it, but ‘it quacks like a duck’. Given that this is 2021 (I will be so glad when this year ends), my rapid access appointment is expected to be before the end of 2022. It seems strange to think that this thing has been going on for forty years and I am getting anxious about a delay of up to a year. I know that a diagnosis isn’t really going to change anything, but my only ray of hope is that it may change things in the future.
So, really all I wanted to do was to say Hi. I may belong here, or I may not. If I do, it will explain such a lot.

Hi and welcome to world of ‘in limbo’.

The delay to a diagnosis is likely to be much longer than a year, unfortunately. The neurologist may decide to have some tests done, after s/he has seen you, and they will take some time. Then a wait (may be months) to get the results of the tests, then another wait (potentially many months) to have a follow up appointment. This is what rapid access is in the covid era … not what most would think of as rapid access. To be honest it wasn’t much quicker before covid though. We need 8 times the number of neurologists to match the cover per head of population they have in Europe - that is why we have such long waiting times.

I’ve had symptoms going back over 40 years too. Had ‘recent’ issues, well it’s now almost 3 years ago, and still no diagnosis. It took them 15 months to do something as basic as an MRI scan. Then they lied about the MRI scan. Kicked everything down the road for another 6 months. I requested my notes and scan from the hospital which was when I discovered they had lied. Got my GP to refer me to a different neurologist. Months to be seen, and he hadn’t seen my MRI scan, when he did see me. He requested a search by my GP though my old medical notes (as 40, 30, 20 years ago it was quite common to have a strong suspicion of a diagnosis from test results but choose to not inform the patient). He said he’d see me again once he’d got that information and looked at the MRI scan. 8 months wait for that follow up appointment. That is set for the beginning of January - I’m now expecting it to be cancelled due to Covid. I also noticed a couple of months ago that the hospital was recruiting for a neurologist with the speciality of the one I am seeing (he’s not so far off retirement age). I wouldn’t be surprised if he retires before I see him again, and end up starting off all over again with another neurologist …

My only advice is to try and live in the present, otherwise the wait will gnaw away at you. It is easier said than done, though. The present is what is real.

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Hi Ziola, thanks for your reply.
I take one day at a time, that will carry on as usual. I just worry because I am becoming less able all the time.
I have had so many tests over the years. I hear a lot of “We can’t really see anything.” I think it’s because there has been no ‘joined up’ investigation. They have looked at my hip, my hands and feet, my heart. etc …
I just hope that I get to answer the questions before the last of my marbles float off into the sunset. Fortunately, the long term memory is still there (possibly).

I looked up HNPP out of curiosity as I knew nothing about it. I can see that there is a big overlap of symptoms with those typical of MS. I also see that there is no treatment for it. And as your risk of having MS will be just the same as the rest of the population it does make sense to check that it hasn’t been overlooked, with everything attributed to HNPP, given that there are medications that can slow down progression of some types of MS.

Anyway you are very welcome on this forum.