what on earth ???

Hi I am 54 and from Glasgow, over past 6 months i have been experiencing pain, tingling, weakness, cramps, inability to regulate temperature in feet and hands < either frozen cold or burning> and lack of co-ordiation which has gradually worsened, its affecting my sleep badly. My GP put me on Gabapentin and got me an urgent referral to a neurologist who i saw this morning. He has taken bloods and referred me for an MRI and nerve tests, he says he is ruling out peripheral neuropathy because i do have an element of blurred and double vision < is it any wonder i had these symptoms when he was whizzing this light back and forth in front of my eyes, it also made me feel sick and dizzy>. I am terrified at what the outcome might be. I cant afford to not be at work nor can i stop driving because it is crucial to my work. I am sick with worry which is probably making it worse

15 Replies

  • Forgot to mention the specialist has changed my meds from the Gabapentin to something else which i cant remember the name of right now

  • i said i have to drive to get to work that was it, he did say depending on the outcome of the tests we may have to discuss driving

  • Hi Lynn I can understand that your anxious but try not to think the worst. The good thing is that your seeing professionals who can hopefully find out whats going on. I hope your workplace pays sick pay as I know alot of places don't which is disgusting in this day and age. Stress can trigger all sorts of problems so try and think of it as a temporary blip. I hope you find out soon and I have my fingers crossed for you. X Lynne

  • Unfortunately i have used up the meagre amount of sick pay i was entitled to, so i have to keep working. The good thing is i dont have a physical job at all its office based, bad thing its all computer based and i find typing for any length of time starts the bloomin symptoms off as does walking............. So many things have become nigh on impossible like chopping veg, doing up shoes, grasping small items, wearing certain types of clothing.

  • Hello LynnCG.

    Almost neighbours - I am 30 miles down the road!!

    By Law your firm has to make 'reasonable adjustments' if your disability prevents you from doing your job - or you have extra pain etc. Maybe a voice recognition compputer?

    Disabled people, or anyone who finds there body not working as intended - will find ways to adapt it. We are masters at it!

    Elastic laces for your shoes. Chopped veg from the supermarket. For everything you can't do there is a way you can do. Not the way you would like or have done for years but its there.

    There may be some things you find just too painful so....don't do them or get someone to help That is the very last resort by the way.

    Good Luck


  • My company are a social care provider and as such reasonably good at looking after staff. Once i have a diagnosis i will speak to them about any adjustments needed, i am still hoping there will be a tablet/ miracle cure that will make this go away lol. yes we are all pretty resourceful, i have created some amazing gadgets to help me grip, cut, wear , carry items lol ...... thank god for chopped veg too !!! lol

  • See I am preaching to the converted!!

    If more people admitted they can't do what they used to and adapted what they can - they would find life a lot more bearable. Let the past be just that - past

    No magic pill but a diagnosis would be a help. Gives you a label! Had mine over 30 yrs.


  • My GP has said to apply for pip to help with additional costs the adaptations etc cost, I am very put off though because of the hell i see people going through to get it

  • I can't offer any reassurance and say it isn't that bad. Its worse but if you get a diagnosis it is worth applying. Bit of advice though. You will get nothing if you tell them you need aids and appliances. Shower chair, bath hoist and anything in between. We had a consultation earlier this year where DWP ignored every single one of us.. But that is normal!

    If you have CAB or someone who can help with form filling that can be an enormous help. I am still on the old DLA but but the 'invitation' to apply for PIP is on the horizon


  • Do you have any neck or back pain. Your symptoms sound similar to mine when after an IRM scan I was diagnosed with cervical stenosis.

    The scan should determine what is going on. If it is stenosis you may need surgery.

  • No Suzy no neck or back pain. I am in really good health other than this carry on. I had bi lateral total hip replacements recently, however the neurologist says its unrelated I recovered from that in under 2 months

  • I think the sooner you have the MRI scan the better. Mine showed compression

    on the spine which was causing damage to the nervous system. I had surgery to prevent further nerve damage without which I would have been unable to walk. It was successful but left me with severe neuropathy in my hands.

    Hopefully your condition is something less serious but get in touch again when you have your scan and let me know the result. Bon courage.

    I live in France but my niece is at university in Glasgow and she loves the city.

  • Hello,

    I'm Not a doctor but it does sound a little like M.E.

    Depending on the test results, you should still be able to drive. If anything, your main issues will switch to the degree of lack of co-ordination on your bad days (when you have flares) and the extreme exhaustion as well as inability to think straight.

    As a Care Provider, I'm assuming that these symptoms will impact considerably on your ability to effectively carry out your role.

    The results of the tests will clarify alot for you but in the interim, it may be worth looking into all the things you could possibly do instead if the worst possible outcome was realised.

    Is it possible to switch to an office based role at work or even something that meant you could sometimes work from home? If not, any chance of cutting back a little to prevent you pushing too hard and 'flaring?'

    The old adage Your Health is Your Wealth - was never so true. Many of us have had to give up on work completely, often because the work basically gave up on us!

    Hopefully, the diagnosis will be something you can happily cope with.

    Do let us know how you get on ok.

  • Those are all symptoms of Low thyroid and/or vitamin B12 Deficiency LynnCG.

    You can have both together.

    Cold and/or burning feet and hands are big pointer to having Low Thyroid.

    Ask for a printout of all your bloods done and pop the results up on both the Thyroid UK forum and PAS Pernicious Anemia Forum sites (PAS is also for vitamin B12 Deficiency.) Drs are well known to miss or over look these patients, but many members from both PAS and Thyroid UK can spot both Low thyroid and B12 Deficiency a mile away.

    Not saying this is what you have LynnCG, but an idea to check it out.

  • I had thyroid bloods checked along with loads of other checks, they all came back normal. I think that thyroid / B12 deficiency was my GP's initial hunch

You may also like...