Forum

feel floored

After starting to feel better I think I went too far and over exerted myself and today i have just declined. Spent the afternoon asleep as I couldn’t keep my eyes open . Not diagnosed and probably won’t be diagnosed but still waiting on neurology appointment to come through because there is something definitely not right. 34 yr old and feel 80. And I wish I was exagerating! I do doubt my symptoms are related to ms, I think I’m one of those who has ms symptoms but in relation to something else it just needs to be figured out. I say that because I had an mri years ago and had no follow up and gp said I’m fine. I know I shouldn’t be here but I do find this forum very good to read as it provides me comfort watching every one chip in and help each other out and also keeps me from worrying for the most part. One thing I know is I miss the old me! Absolutely sick of feeling so old when I’m not particularly inactive. And i am even more fed up of spending my days off work recuperating from the days I worked. I want to be fun me again. Not old me before my time! P.s. I realise I just handed out a large dose of self pity there. I just needed to get it off my chest! I have looked at a few ms mimics but there seems to be so many! What are the main ones? I’m just trying to give myself a headstart as appointment is taking forever to come through?!

Hi.

I dont think you are self pitying.

Your body`s doing things you dont understand.#

It is worrying you…all very normal chuck!

I`m 64 now. When I was 45 I was fit, active etc. Then I started tripping, stumbling and taking some spectacular falls!

I saw a neuro who ordered tests, mris, lps, emgs, a vep and bloods.

I was presenting as typical PPMS. But no test ever proved it.

I was diagnosed with PPMS for 10 years.

My mobility worsened and I was unable to walk or weight bear and have been a full time wheelchair user for around 15 years.

I am hoisted for all transfers and have a supra pubic catheter.

In 2010 my diagnosis was changed completely! I was shocked all over again.

My current dx is HSP…hereditary spastic paraplegia…it is unproven. I dont think I have HSP…but dunno what else?

I still miss the old me…but make the best of it.

pollsx

Thank you for your reply. I’m trying my best not to worry but my leg gave way again twice this week which has really made me realise that I need to not overdo it when I feel OK again. Spent the day at work trying to ignore my body but the pin pricks it kept giving me were making that difficult. Went down to the health shop after work and got some supplements even though my gp tested all my levels and they were fine I think it was on this forum that I read the hospital do a different test so maybe I am low on Vit D and B12 just not by the GP standard. It’s worth a try I guess. I’m starting to struggle emotionally with it all now because why can’t my leg just work? I wouldn’t be so bothered if it was both legs because it would be easier to explain away that I’m on my feet too much. One thing is for certain though I will keep trying to be positive despite my frustrations. Are you continuing to look for a diagnosis? It’s awful that after all those years they change their mind about you!! You have all this to deal with yourself yet you find the time to help others on here. Thank you x x x x

Salty pie, having your body not work normally is hard. Hoping for answers is a focus. The length of time it takes to see experts I feel is just plain wrong. Hugs & I hope you get what you need soon.

Allo again chuck.

Please can I ask you to space your lines out, as I do keep losing my place when reading your posts and I do so want to read them? Ta for that.

How long have you been waiting for an appointment? You could try ringing the neuro dept and ask if you`re on the list yet.

I paid for my first consultation, as there was a 10 month waiting list!

Things have got better, but if you dont want to wait, you could go private initially, then transfer to the NHS. You`ll probably see the same neuro anyway, as I and most others did.

It costs around £200 for a private appointment, I think.

Regarding you wondering why both legs arent affected, just the one.

That is very much often the case in neurology. I wouldnt let that worry you too much.

Be careful about taking supplements without your GPs knowledge. Even though they arent prescription drugs, they can still sometimes be harmful. Health food shops wont always tell you that.

It`s my pleasure to be able to offer support to anyone who it might help. I get a lot back from this forum too.

love Pollsx

It’s not letting me post my reply it keeps saying error

Basically I wrote that I received my refferal it’s with the appointment team and apparently the average waiting is 17 week so I’m halfway there. I can’t afford to go private unfortunately but I’m just grateful to be getting seen anyway after years of ‘get on with it’ I hope the spacing works. I think that’s why it kept saying error in my original because I pressed the space bar a ton of times to separate the paragraphs lol

I know that feeling, so frustrating, you type a heart felt response & it says error, Then you do a simple one and it works.

Lol, I wrote a longer post and got an error message. So I am giving up…but, hugs

Yeah I give up too. Gave me a giggle that it wasn’t just mine though lol thanks and hugs back x