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Hi I'm new to this

This is my first time posting. I’m 46 years old and first presented with bladder symptoms 4 years ago and weak legs 3 and a half. Saw gynae who helped with bladder and the GP who said legs were due to stress.
Finally saw a Neuro in May who flagged up ms as a possibility. Had EP’s, Lp and CT scan (very claustrophobic). All these completed by mid July! Still have not had any info about what is wrong. Finally received a follow-up appntmnt for 11 Oct this week.
Since May symptoms have significantly worsened to the point that I no longer feel like a human being and am suffering a lot of pain in my legs and terrible burning all through my limbs all night.
GP gave me amytriptiline but it caused even worse insomnia. She offered gabapentin but possible side effects put me off ie. Incontinence and sleep disturbance.
Have 4 sons aged 6-16 to care for which is becoming very difficult. Husband works in London nights as a journalist so I spend a lot of time on my own. Finding life very difficult.
Thanks for reading this and sorry to be so miserable.
Tree65

Hi Tree65

So sorry to hear how long you have been suffering with this.
I’m new at this too and have just had my follow up from the Neurologist who showed me my scans and told me that he wouldn’t be surprised if I had MS, although I had to ask him outright if this is what he thought it was. I suppose they don’t like to diagnose without positive results. So now I’m waiting to be called in for a LP at Hope Hospital.

It’s difficult waiting and wondering whilst the symptoms seem to be taking over your life. The only thing I know for sure at this moment is that you need your family and your friends to give support emotionally as well as physically. I would have found the last 3 or 4 months impossible to cope with had it not been for them to moan at, cry with when miserable and to physically help around the house.
You can also use your on line friends on here to share your fears - we all have them and you are not alone!

lots of love
C

Thanks for your kind words Shirley, this darn illness makes you feel so isolated and scared. It’s good to know that other people understand how you feel.
Tree65

[Hi there Tree
Welcome to the site, I hope you will find it helpful and informative, feel free to nose about and visit the other boards, especially the everyday one as loads of useful stuff is discussed there.
You are currently in the worst phase - ‘limbo’ - where you are not fish or foul! This may sound daft but when I got a full Dx (about 9 months ago now) I felt like a load had been lifted from my shoulders; I still had to deal withthe daily sh*t of MS but now I knew the name of the beast and darn it if I’d let anything I could name beat me!
Clarexxx

Hi Tree65 and welcome to the site :slight_smile:

My first thought on reading your post was “Please take the gabapentin!!!” Gabapentin is a neuropathic painkiller - it should help with the pain and burning you are having whereas regular painkillers will do nothing. I used to have terrible burning in my left leg - it was stopped almost entirely by pregabalin, which is very similar to gabapentin. A huge relief!

Remember that potential side effects are just that - potential. If you try them and they give you side effects that you can’t handle, then stop, but remember thatmost side effects wear off after a couple of weeks.

It’s a matter of weighing up the pros and cons, but only you can decide which is more important.

It seems an awful long time since July to be waiting for results. You could always try calling your neuro’s secretary and seeing if she/he could shed some light. Or ask your GP to try for you. Mind you, 11th October isn’t long now. I hope you get some answers.

Karen x

Thanks Karen, I may try the gabapentin as I can’t stand the pain and burning much longer. Can hardly leave the house at the mo. As to the Neuro’s secretary, I have already gone that route and no joy. 11th Oct cannot come soon enough for me.
Tree65

Hello tree65 I am new to this site and still in limbo over three years.

Its not nice having to deal with illness and have four boys to look after :!: hope you have good friends and family who can help out, and if they offer take them up on it.

I take Gabapentin and Baclofen they have been great for me, they start you on a small dose then move you up slowly i now take 2700mg of Gabapentin and three half tablets of Baclofen they do not take all the pain or cramp and spasms away, but without them i would dread to think.

Look after yourself and take care :slight_smile:

Tracy x