Not diagnosed, waiting for neurologist appointment, and scared

Hi all. I’m new here and rubbish at these message places but I want desperately to talk to people in the know who will understand. My doc finally referred me last week, after over a year of different blood tests and pills etc. He did the reflex tests on my bad side and my knee nearly kicked him off the chair and when he did my elbow it was my hand that moved rather than my bicep.
To start with they thought it was fibromyalgia, but now added to the existing fatigue and aches that I’d come to realise I just had to live with, the electric shock shooting pains are worse and way more regular, and I have numbness from my butt down on the left side and floaters and vision that’s like my eyes are too tired to focus. I feel like things are moving under my skin and the chest/shoulder blade pain that use to just come when Id over done it now comes if I just do some washing up! It’s been like this since the 6th and I keep thinking I’ll get better tomorrow, but I don’t. Since Friday my abdomen has started doing random jerks, just one jolt then nothing for a while but I’m so scared it will get worse. My thigh/arm muscles feel like someone is twanging them like a guitar string, vibrating and buzzing, and I hurt all over. I am struggling to walk up the stairs because my legs a wobbly and just not strong enough and I can’t get up without help, I feel so heavy. I know my situation is not as bad as some I’ve read on here, but here is the only place I’ve uttered the words “I’m scared” because I am forcing a smile and staying cheerful, I feel like I’m going mad and that it must be all in my head!!!
Help please :sob:

Hi Kyla

Its understandable to be a bit scared with all the weird stuff you are experiencing; I am glad to hear that you are now being referred. The Neurologist will be the one to get to the bottom of what is going on. Do you have a date yet?

The lovely hot weather we are having, is causing havoc with a lot of people with neurological conditions, causing an increase in intensity, frequency etc. However, once the weather cools down some, the symptoms should ease up too.


Hello love, I know just how feel sweetheart.

Fibro does sounds horrendous and often gets mixed up with MS diagnosis.
It is scary!

You are suffering so many different symptoms. BUt now you are going to get a proper diagnosis. So let the neuro do his job.

I’ve had ppms for 25 yrs. I can do little without help from carers and hubby.

I also have ENORMOUS help from my savior Jesus… He keeps me from giving up trying.

Look after yourself love.


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Thankyou :slightly_smiling_face:
Yeh, I’m on the right track now thankfully. Just hope the tests give me an answer!! Something to fight against is better than the unknown.
I’m glad you have a faith, that can be such a help.
Take care of yourself

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Hiya, thanks for replying. I’m glad I found this site because it helps knowing others out there who understand.
I don’t have a date yet but the letter I received yesterday said if I hadn’t heard anything in 8 weeks to ring and check I’m still on the list (!?) so I’m hoping it will be this year sometime at least :joy:
It was very scary last night, I sat in a meeting for about 30-45mins and after about 10mins my butt, then leg started going numb and like cold inside. It kept doing random twitches with the electric shock sort of pains. When the meeting was finished I tried to get up but my legs were so wobbly and weak I had to have help getting to the car (I wasn’t driving) The sensation lasted about 20-30mins before it eased off and although still weak/achey I could walk by myself. I had another patch of twitching again today and struggling to get up from the chair but not as bad.
It’s awful not knowing. I keep thinking, do I just keep going the best I can until the appointment or is there something I should be doing? 🫨