Symptoms and the frustration of the UK waiting lists...

New diagnosis and before diagnosis
1

Hi everyone! I have been browsing on the website for a while and I know I probably should not have, but on TV I saw somebody explain her symptoms of MS and suddenly a lot of the problems I have had in the past 9 months started to fall into place. Now I know my symptoms are not necessarily MS (I sure hope not!) but I did start to get a bit worried.

My symptoms started in November when I was 7 months pregnant with my first son. It started as a stabbing and pulling electricity pain in my left big toe (the skin of which I could not touch, it was so sensitive, and still is). Then I started to have numbness in that toe. Next I started to get pulling, excruciating pain in my right knee and numbness. These numbness and neuropathic pain have now spread to both feet and both knees and the tingling and numbness and weakness is now in my entire right leg. My right knee feels so weak, it feels like it can snap in two any time. My other symptoms include foggy head (but hey, I AM new mom…;), lower back pain (intermittently very bad to nagging), and tingling in my hands. I have had nerve problems before in my life, with what seemed a trapped nerve in my shoulder causing neuropathic pain and tingling in my right arm and having had an operation for carpal tunnel syndrome. I am also extremely forgetful, can’t come up with names etc.

So I finally was able to see a neurologist in July (they wanted me to wait until three months after pregnancy to see if it would get better postpartum) and she was quite baffled. She sent me to have an MRI of the rest of my back (I had one done already for lower back) and my neck and head. The neurologist has NOT mentioned MS by the way, so that is a relief I guess. But now I can’t seem to be able to get my results and the outpatients clinic tells me I am on the waiting list for the next appointment with the neurologist, which I think is strange, I thought waiting list was only for first appointments? I get so frustrated not being able to talk to anybody about this.

Anyway, if anyone recognises my complaints, I would love to hear it… also if you have any ideas of how to speed the process up, I would love to hear that too!

Melissa

2

Hi I saw you hadn’t a reply yet so thought I would (It will also “bump”.your post).

I’d think your symptoms could be experienced by soome one with MS but then MS causes such a wide variety of symptoms.

Also MS halts (usually at least, I’m not sure) during pregnancy so I guess MS is very, very unlikely.

I think being on a waiting list for follow on appointment means that they don’t want to retain flexibiliy to see you sooner rather than later but it is not urgent. An ongoing but non-urgent investigation rather than a routine appointment far in the future.

3

Ms doesn’t necessarily halt in pregnancy, but relapses are fewer in some women. But as Vithfari rightly says, it can be due to so many different problems. Interestingly, B12 deficiency can occur during pregnancy, so maybe a few blood tests by your gp wouldn’t go amiss. Hope you get some answers soon, this on top of being a new mum must be both tiring and worrying for you.

4

Hi Melissa

Have you tried speaking to your GP to see if he/she can shed any light on your results? They may have had an update or correspondence from your neuro following your scan.

Good luck with it all. It can be a long and frustrating wait!

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Thank you hunny, I will try that tomorrow…

6

Thanks everyone! Went to GP today and he is going to chase it up… He did have a letter from neurologist describing what she found during physical exam… Mostly numbness and neuropathic pain but that she was struck by its symmetry in both extremities, for which reason she wants to have a scan of the cord (which I had four weeks ago)…