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

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Dear Melissa,

I’m sorry, I really can’t help help you with the symptoms and I’d love to find a way to shorten the wait! Technically, you can go private if you can afford it. I still haven’t seen a neuro, but nagged the hospital to send the MRI report to my GP. At least I know now if there are indicators for MS or not and every bit of information counts (at least for me).

I’m really sorry I can’t put your mind at ease. I get so annoyed with these waiting lists, especially because MS limbo is really not made easier by the fact that there is such a breadth of symptoms that even medical professionals often seem uncertain. It’s also so difficult to know what to do in the meantime: prepare for the worst or ignore your symptoms and pretend you’re not sick?

It must be really difficult for you. My sister’s auto-immune-hepatitis manifested itself a about 4 months after she had her baby. I know how much my sister struggled being a new mum with unexplained symptoms, spending about a year running from one specialist to the next, trying to figure out if she should take the meds or try holistic approaches (in her case taking the meds means that she can probably forget about having another child, but holistic medicine really didn’t help).

Hope you know more soon,

mj

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Thank you very much for your kind message, mj… Yeah it is hard, thankfully I have an amazing little boy who is so good, he keeps my spirits up! :slight_smile: I am thankful for the NHS but it’s a shame there is such a shortage of specialists, especially neurologists…makes it even harder to deal with unexplained stuff…