Hi Everybody , I,m new to this site and to forums in general so please bear with me if I ramble a bit.
I have had ongoing problems for many years now but always small and niggly and within reason able to be ignored. Any time I approached my gp they didnt seem to have a clue or understand what i was trying to describe to them. I was eventually referred to the general medical dept of my local hospital where after several appointments they sent me for a cat scan of my head which came back clear which led them to advise that they didnt know what my problem was and i should learn how to live with it.
I cant remember the timings now but at some point one of the gps at my practice decided that my symptoms warranted a refferal to neurology. After waiting for ages for the appointment to arrive i discovered that the appointment had been sent to my old address and i had missed it. Stupidly i decided that because the symptoms i had been having had waned away not to pursue another appointment. ive toddled along reasonably happily since then with only the small niggly problems arising every now and then but living with it as i was advised by general medical.
That is until two weeks ago when i woke up with pins and needles/ tingling/ burning in both of my feet. I ignored it for the first few days but eventually headed back to my gp again. She agreed to a new refferal to neurology and that was it as far as i was concerned, i just needed to sit back and wait for the appointment.
Until a week later i was floored by extreme exhaustion and have hardly been able to get out of bed since. Got gp in to see me earlier in the week and she chased up neurology who said they would try to squeeze me in asap but said no point admitting me to hospital cos they wouldnt be able to help me, that i really needed to wait for neurology. Struggled on for another couple of days then phoned gp again as i wasnt coping. she said neurologist had advised that i could have a course of steroids if i couldnt manage any longer and thats where i am now.
Started them last night and think I’m feeling slightly better already. I guess I’m just interested to hear if there is anyone else experienced anything similar? How long should I expect to wait to see the neurologist? How long am I likely to feel this bad and am I gonna be able to get back to work?
It may be relevant, I’m not sure, my Uncle was diagnosed with ms about ten years ago.
Thanks for taking the time to read this, I’m sorry I know it’s a bit long.
Sorry you are feeling pants at the moment,but things will get better.
I have to say that your symptoms could be the result of a wide range of conditions,many of which are treatable,so dont get too wound up on the cause just yet.
The neurology approach is to rule everything else out before dx ms so it is a long road of tests and then waiting for results,then maybe more tests etc. Many of us are also left with a probable ms dx and told to go away and get on with life by the neuro but you stay on the books in case another episode begins.
Everyones journey is different but this part of the forum is aimed at people like you in limboland where strange things are happening,often things that are hard to explain and cant be seen and you dont know where to turn.
There is always someone to help on here,so pull up a chair and ask whatever you want. There are no daft questions.
As Pip has said, it can take a while to get to the bottom of what’s causing you to feel like this. I can’t imagine you’ll have to wait too much longer for an appt if a neuro has already advised a course of steroids, but if it drags on too long then definitely give your GP another nudge.
There’s no telling how long a relapse will last - steroids are designed to help speed up the recovery time so hopefully they’ll kick in and you’ll start to feel better soon.
Whilst you’re waiting for your appt make a note of your symptoms, starting with the worst ones. Try to keep it as brief but as concise as possible and remember to take it with you to your neuro appt. Give a copy to the neuro too so it can go on your file. Sometimes it helps to take someone with you too.
Fingers crossed you start to improve and that appt wings it’s way to you very soon.
Started the steroids last night and already I’m beginning too see some improvement. Tingling and pins and needles is still the same but at least i’m actually out of bed and able to eat and drink a little.
Gp said they were chasing up neurology dept again today but still no word.
If this is an ms exacerbation is it likely that the steroids will bring it to an end and i will feel better once the course is finished.
I’m on 40mg predmisilone for 5 days so will be finishing course on Monday.
As the others have said, there are actually a load of conditions that might be causing your symptoms so try and keep an open mind - it might turn out to be something that is treatable.
I’m glad you’re feeling a bit better today, but I have to say that I’m surprised by the steroids prescription you mention because steroids for nervous system inflammation tend to be at a higher dose. So it might be worth checking that you’ve been given the right amount?
I hope that today is the beginnings of remission for you
I have checked the dosage on the prednisilone and thats definitely what the gp has prescribed. It may not be the full dosage but i must admit it definitely seems to be helping.
I will be speaking to my gp again on Monday morning and will check again that they have prescribed the right dosage.
Thats one of the things that is concerning me is that as soon as the course of steroids are finished on Monday and I just go right back to how I was feeling before.
Thanks for your reply. I really am trying to keep an open mind but goodness it’s really hard. If I could get back to living a normal life and not lying here on the sofa everyday I might be able to distract myself and not be worrying about it all the time.
Hi Anne-Marie, I’m sorry you’re having such a tough time I’ve literally just finished a 3wk course of the same steroid for my relapse and I don’t feel like I have gone back to where I started. I was on a slightly higher dose -60mg reducing to 30 and then I’ve been weaned off this this last week. My new neuro does things slightly differently and gives hefty intravenous steroids (1gram) over a 3 day period which is perhaps what Karen is referring to. I know you shouldn’t have to do this, but have you considered going privately for a neuro app? It would cost around £200 but you might get seen this week, especially if you explain the severity of your symptoms to the secretary. The consultant can then add you to their NHS list for any tests, but at least you’ve seen him/her quickly. I appreciate it’s a significant cost. I think you’re doing a great job of keeping strong. It’s frightening not knowing what’s happening to you. The steroids are having effect so keep positive hon xx
thanks for the private neuro info Stardust-although I’m on benefits I think £200 is a small price to pay not to have to wait years to persuade the nhs to take you seriously.I might just make a call tomorrow! xxx
If you are going to go private, make sure and get someone who is worth the money! Use the “Near me” function on this website to make sure you see a respected specialist.
I’ve literally just finished a 3wk course of the same steroid for my relapse and I don’t feel like I have gone back to where I started. I was on a slightly higher dose -60mg reducing to 30 and then I’ve been weaned off this this last week. My new neuro does things slightly differently and gives hefty intravenous steroids (1gram) over a 3 day period which is perhaps what Karen is referring to. I know you shouldn’t have to do this, but have you considered going privately for a neuro app? It would cost around £200 but you might get seen this week, especially if you explain the severity of your symptoms to the secretary. The consultant can then add you to their NHS list for any tests, but at least you’ve seen him/her quickly. I appreciate it’s a significant cost. I think you’re doing a great job of keeping strong. It’s frightening not knowing what’s happening to you. The steroids are having effect so keep positive hon xx