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Waiting to see neurologist

Hi everyone, I’ve been told by the GP I have symptoms of MS and been referred to see a neurologist but am still waiting for an appointment after two months. I’m feeling extremely isolated. I live alone, and have tried reaching out to a few friends about it (not my oldest, closest friends - I don’t know how to tell them especially as I haven’t had an actual diagnosis yet) and have been confused and depressed by peoples reactions. I have a feeling I am about to find out who my real friends are. I’ve been trying to hide my symptoms from people mostly. I’m not sure what I should be doing in the meantime - I read it’s good to exercise. I play the accordion and have been worried to play it in case the weight and exertion could do damage?

At the moment I have burning thighs, icy cold water sensation trickling from my knees downwards, and unreliable legs (on and off). I lose my balance a lot. I drop things a lot (or throw them across the room!) find some things difficult to hold. Keep thinking things are further away or closer than they are. All around my rib cage is sore and feels like I can’t support my upper body. Like I’ve been beaten up. I keep walking into things. Lower back pain and forgetting words, what I’ve just done or said. Also the embarrassment of toilet problems…and sudden maddening itching…People are taking it personally that I’ve momentarily forgotten their name or what they’ve told me, or their birthday. I forget things I really care about, things I really want to remember and it causes me a lot of confusion. greyouts, odd visual problems and sensations, headaches, and a sudden decline in vision where I was no longer able to read small writing such as on food packaging. Also has anyone had a thing where you can’t breathe and feel your clothes are tight round your neck - but they aren’t, and you feel theres a load of flesh grown onto your throat so you cant breathe?

Yesterday I dropped a lit cigarette on myself and didn’t feel that I’d dropped it. When I felt my thigh burning I thought it was just a phantom burning like usual and so didn’t check straight away . Luckily it only went through two layers of clothing and didn’t do any damage.

I’ve been having strange symptoms for ten years since an autoimmune system disease wiped me out and I had to walk with a stick for six weeks (it was a kidney disease, docs didn’t know why I had walking problems) since then it’s been fatigue, depression, massive weight gain, diabetes, high blood pressure (4 tablets a day) then swallowing and appetite problems resulting in massive weight loss ( 8 1/2 stone ) after which the diabetes has apparently disappeared, mystery illnesses, which then disappear leaving me fit as a fiddle for a while till old symptoms come back or new ones appear.

I am a musical performer and I worry this will stop me performing. I have already cut down a lot on what I do.

Does anyone have any advice how to get through this? No one I know in real life will have any idea how I’m feeling.

My best friends at the moment are my cat, tea, candlelit bubble baths and mr. electric blanky.

Hi DDBB, I’m also waiting to see a neurologist (tomorrow! After an 11 week wait and 15 months of writing a symptom diary). If you haven’t yet received an appointment letter, I’d check with your GP that it is on its way. This forum is a huge help for me, a place to chat to people who are in the same boat and those who are further along. I’ve used the helpline once too, that helped me get the courage to go back to the GP. It is hard to talk to people about this without a diagnosis, isn’t it? My GP has suggested ME / Chronic Fatigue Syndrome which doesn’t quite sit right with me, but at least being able to tell my hubby what the GP thinks has helped him cope with it (my fatigue, poor memory, no libido - poor hubby). Cats are wonderful at stress release. I miss mine…but my aunty and uncle live nearby and have five adorable pussies. Candle lit baths are lovely but hot baths make me worse. I play the treble recorder (by ear, love folk tunes) and actually picked it up the other day a little worried that my fingers were not behaving, but I managed a few tunes. When I could eventually remember them! There are many knowledgeable folk on here, so ask whatever you need to. All the best :heart:

Hi. Like you I have tried to hide much of what is going on from most people and tbh the couple that know don’t want to talk about it but I try not to take it personally (hard some days). The wait for a neuro appt can be ages by me it was 4mths before you even got sent an appt date which was a further month unless urgent. You could phone the appointment department of where you have been referred and ask how long the wait is and that you’ll take a cancellation. This forum did make the uncertainty and wait better though Axx

Hello.

My neuro wait wasn’t as long as yours and your symptoms sound really bad.

Why don’t you contact your gp and ask them to speed things up?

If you don’t ask, you don’t get.

Take care, Noreen xxx

Hi, I know what it feels like to be unsure how to tell close friends. I have only told one friend so far and I haven’t said the word MS, I just said I have a suppressed immune system, which is partly true but of course not the whole storey. May be thats enough I need to tell then for the moment until I get my head around things. With that i’m sure they can understand I might not be up to doing some things if I don’t feel well enough.

I’m musical too and write music at home (piano) but not brave enought to perform live. I’m sure you can carry on doing what you love. Your cat, bath and electric bllanket sound lovely and homely. There is so much support on this forum and we know how it feels. Take care of yourself xx

Thanks everyone for the supportive messages, they are a real lifeline after a hard day, I was at the end of my rope. Just what I needed. I felt there was no consolation, but you have comforted me by talking to me about it.

Good luck with your appointment tomorrow Reikiblossom x I love the recorder too, and folky tunes! I think playing musical instruments massively improves your coordination as well as de-stressing you. +=

Thank you Arwen and Blossom, I will go back to the GP tomorrow and see what’s what and maybe phone the appointment line. I do have a lot of symptoms this time round. I was prompted to go to the GP eventually by a friend who thought I had MS as he has a friend with it and he noticed a lot of similarities. I did suspect it over the years but then the symptoms would go and I didn’t know they were all connected and I’d forget all about it till they flared up again.So lots of trips to the doc with no conclusion.

Helebon that’s a great idea to say suppressed immune system until you’re comfortable to say MS. I’ve been writing lots of piano music at home too since I’ve cut down on gigs, I’m finding piano very soothing like meditation and it gives me a sense of purpose. I’m setting myself a task to sketch a portrait of a friend every day and write at least 8 bars of music. I’m prone to depression but I feel if I can do these things and keep up with my chores I can ward it off.

Thanks again for your support, it means ever such a lot to me, you are lovely people xxx DDBB