Worsening symptoms prior to 1st Neuro appt

I’ve been a member for about a couple of months since my doctor referred me to a Neurologist and I love how supportive this forum is. I have learnt a lot about how the condition affects the individual along with loved ones and friends. I wasn’t going to post anything until I’d at least had my first Neuro appointment but I am in need of some advice.

My doctor is concerned about my symptoms which is why he referred me back in November last year and my appointment is this coming Tuesday, 21st Feb. Obviously, I am aware of the long road ahead and also not to jump to any conclusions that this is definitely MS. Since my doctor made the referral, things have got worse and more noticeably a lot worse over the past couple of weeks. The main symptoms that are now also keeping me awake at night are a very strange, tight feeling around my ribs, my back (from the top of my neck all the way down to the base of my back) becomes very stiff for a few minutes up to around an hour and then will loosen off. When this happens my bum and top of my thighs go numb plus the nerves/muscles become very twitchy. I have noticed that my arms and legs will suddenly jerk for no reason. There are the other symptoms that have become worse, fatigue being one of them but these are the ones that are causing me a lot grief. My question is, do you think it is worth seeing my doctor prior to my Neuro appointment or would you leave it until I see the Neurologist. My personal view is to wait but my husband is getting increasingly concerned. I just wondered if anyone could offer me some advise please? I feel like I am constantly stretching to try and ease it but nothing works. Everyday movement - including going to the toilet - is becoming very painful because I am struggling to even lift the toilet seat, nevermind try and sit down!!

TIA

xxxxx

Hi, I’m in a similar situation to MrsFred. My neurologist up to now has been very cautious in his descriptions of me. However I had an appointment yesterday and after describing my now worsening symptoms, his language has changed from someone who might have MS to someone who has. It’s probably no great surprise to anyone but I felt completely floored.

I have tightening of my legs and much reduced mobility. Noticeable for me but not as bad as Mrsfred. I am now referred for my third MRI scan where it feels certain that the formal diagnosis will confirm MS.

TBH even writing this post is helping and that outcome yesterday now actually feels like a good thing as hopefully I can start some medication. Hope you can maybe get some hope from that?

Best wishes

hi mrs fred and ian

you both have apointments in the pipeline which is good.

mrs fred - you have nothing to lose by having a chat to your gp.

so do it for your husband.

our menfolk don’t like having to let other people make the decisions for them, so letting him have the feeling that you are listening to what he suggests will help his self esteem.

i’m like you and tend to wait but my hubby often wants me to push for more.

i really feel for you both.

i’m a positive person with a glass half full.

but PIP application really stressed me out and i got depressed describing how poorly i am.

picked myself up.

then the decision went against me, from enhanced rate both components to standard rate for both.

therefore i am now worse off by a substantial amount and will lose my motability car (my freedom).

so i have put a request for mandatory reconsideration in today.

basically i have spent 2 full months on paperwork for this.

i entertain myself by using very bad language!

DWP - make acronyms for these letters!

hee hee!

carole x

I also have been referred to a neurologist in 6 weeks time following nothing abnormal in my blood results. My extreme fatigue is now a daily battle and major impact on my employment… I sleep through multiple alarms, when I wake I feel completely disorientated and cannot function. My muscles in my arms and mainly legs are weak and my legs shake. I want to go back to sleep and have to fight to get up. I sleep all weekend and can have conversation’s with my Son and no recollection. Suffer with pain in my neck and back and have trouble walking up and down stairs. I do have bowel problems but always put down to IBS. Also not had a sexual partner for over 2 years as no interest whatsoever in sex now. My vision is blurred and eyes are always irritated. My Manager is aware of my doctors visit and neurology referral… also advised HR regards my lateness in mornings. However, my Manager does not understand the issues I am facing, tells me to set more alarms, go to bed earlier, I am taking the p**'s, said "as a bloke he doesn’t understand, texts me horrible texts in the morning. I can find a lot of advice when diagnosed but does anybody know my rights whilst waiting for diagnosis and my symptoms are worsening. Thank you.

Hiya Fred,

Sounds like the ‘MS Hug’, see https://www.mstrust.org.uk/news/views-and-comments/what-ms-hug Heat helps, hot water bottle. They say that wearing a hat (stop laughing) can help; it makes the brain think of the hat not the intercostal muscles going into spasm.

This will give you some info about your first appointment; Diagnosing Multiple Sclerosis

Worth trying; can’t understand the good old society has not got much if anything on it. Strange as it is a common symptom.

George

Hi JanieMc,

I suggest you call in Access to Work Get support in work if you have a disability or health condition (Access to Work) - GOV.UK they can also arrange taxis to and from work plus lots of other things.

The main thing though they will tell your employers they by law must offer ‘reasonable adjustments,’ one of which I would think is an understanding and accepting without hassle why you late. Still get taxis and you will not be late.

George

Me again; you do not need to be diagnosed.

Georgie