Hi there I’m new to this in terms of joining but have been nervously observing posts in an attempt to try and keep myself sane over the last few months! So tonight I’ve taken the plunge and joined in the hope I can interact with other people that can tell me I’m not going mad! I’ve had a tingling/million spiders inside my left arm for years, which I’ve had unsuccessful Physio on for months. I’ve been given Gabapentin to ease this sensation and also help me sleep, as the sensation in my arm was always worse at night. Also for several years on and off I’ve had a cold feeling in my left foot, which can also be very painful, which since July last year hasn’t gone away. I’m now at the stage where I can’t walk more than ten minutes without getting exhausted and in pain. I have the same tingling/spider sensation in my left leg. At worst I would gladly (without sounding dramatic!) let someone chop my leg off to get rid of the pain and discomfort!!! Today I was told my MRI on my head was clear, which is great news I know. I’ve asked for a spinal MRI. Does anyone have these symptoms? Could this be MS? Thank you in advance to anyone who may take the time to read this
I’m not really experience enough to offer any advice, but just wanted to say . You’re definitely in the right place, and I hope you get the assistance you need
Good for you for requesting a spinal MRI, keep pushing for answers!
Thank you! Appreciate the “Hello” !
Hi there, I’m quite new to all this too,but it is good to come on and chat with people who can relate with how/what you are feeling. My MRI’s have also come back clear, I was also thinking of asking for a spinal scan as this hasn’t been done. I’m having real problems with pain at the mo, mostly in right arm and leg, sharp shooting stabbing pains,come and go. Also noticed I ache, like i’ve been using muscles i’m not used to using and they ache, if you know what I mean. I am waiting to see a neuro, will be ringing hospital monday to chase it up. xx
Hi, just hang in there and ask for more tests and consultations.
I spent 14 yrs having tests and was told I probably had PPMS for years.
last year I was finally told, I defo do not have MS, but spastic paraparesis/cause unknown.
The reason I wanted to reply to your post (apart from to welcome you here) is to say that I identify those feelings of wanting someone to chop your leg off.
I felt like that when I kept tripping over my dropped foot. The pain in my hip and thigh from trying to lift the leg, as I walked made me wish it gone!
Hope you get an answer soon.
Hello and welcome
There are so many things that can cause neurological symptoms, it can take a while to narrow it down
Good move with the spinal scan. Hopefully it will be more helpful than the last one in terms of giving a clue as to what’s going on!
Has your GP run a through battery of blood tests? If not, definitely go and ask for everything possible, no matter how obscure - even a simple vitamin deficiency can cause loads of neurological symptoms.
Also, the max dose of gabapentin is 3600mg a day. If you are not at that yet, ask your GP about increasing your dose to try and get your pain/sensory symptoms under control. (Increase your dose slowly - it will help minimise side effects.)
Hi Nat Thank you for posting - it sounds weird but feels better to hear I’m not on my own. I too have to ring the hospital on Monday to confirm spinal scan appointment. For me personally I am certain I would be able to handle all this pain if I knew what it was. Good luck in getting yourself sorted, keep in touch if you like and thank you again for taking the time.
Hi Poll Wow all that time you must be made of strong stuff! Thanks for posting appreciate it. I’m also getting pain in my hips (didn’t mention it before as the list seems to go on and on!) but this helps me to know, again it’s not just me! Hope you go on alright and hopefully the only legless we get is thro other means! Lol!
Hi Karen Really appreciate your advice on bloods. I have my annual bloods as I have high blood pressure but not sure what that actually covers so yes I will ask for this. On the Gabapentin I’m on 1800 so again I will definitely ask about increasing and as you say do it over a period of time. I have so many things to look forward to this year but feel afraid I will spoil it for others because of my limited mobility with walking, so maybe more tablets will help this. Do you know if Gabapentin is used for MS? Thanks again for your post and advice x
Hi outta lunch Just wanted to say hi !! Xx
Gabapentin was originally used for epilepsy, but is now also used for all sorts of neuropathic pain, including neuropathic pain caused by MS. Kx
Hi MrsH ! x
Thanks Karen I feel I have more direction now to go back to the docs/clinics with x
Hi Outta lunch,your definately not alone, seems like so many of us are in limbo trying to find out what’s wrong with us. Pain is a new symptom for me, mainly right side. The pain is sometimes shooting and really painful and quite fleeting.Other times I ache,like you do with flu.My right arm hurts most of the time,and I sometimes get shooting pain down into my fingers. I also get a painful hip. Pain in the arse all of this pain. Will see what tomorrow brings for us both. Let me know how you get on,and how long your wait is for spinal scan.
Hope you get sorted soon
Hi Nat I will do and thanks, it sounds like you are just like me but different sides. It’s so weird, for me I think I will feel like I can handle it more if one one can just tell me what it is. Ill let you know how I get on and good luck with yours too Mandy x
Hi Mandy, didn’t know when I put pain in **** the word would get filtered, so I wil re-phrase that and say all this pain is a pain in the neck (LOL) Anyway rang hospital today to try and chase up my appointment only to find my neuros secretary in on leave, however did get to speak to someone who reassurred me that she would find out what was happening,as my letter had been marked,she thinks this could be a query about something (not sure what) She said I should get a letter soon with an appoinment. Fingers crossed,hope I’m not waiting too long to be seen.Did you have any joy today???
keep in touch and let me know what happens
Hi Nat Well I’ve had a hell of a day! Rang the hosp. Only to be told my neuro was on holiday … Maybe with your neuros secretary?! Lol! The only way I could get anyone to listen was to make another appointment with my pain clinic. Which I’ve got next week. As it happens today I also got my letter saying my brain scan was clear - which stated “so it’s not MS” !!! How can he just dismiss this without any other enquiries!!! ? Grrr! I felt totally dismissed and tbh had a good cry! To add to it all about an hour later. Had the worse spasm in my right side. Knocked me for six. Been in bed all day. So Nat, like you i’m waiting again, seems like that’s as much a challenge as the symptoms - being patient instead of being a patient!! Good luck and keep in touch xx