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Foggy's "Invisible Illness" Support
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neuropathy

i have had perifual neuropathy for 10 years but for the last 3 months when i woke up in the morning my legs felt like they had weights on them and my hands and arms are numb i trip over my own feet cant walk in a straight line i cant feel my hands at all my legs keep giving way on me feel like i have run a marathon i saw a neurolagist yesterday he tested my reflexes knees and elbows they were ok then he got this small white thing out it had a top on he took the top on told me to close my eyes and i just sat there when i opened my eyes he asked what i had felt i felt nothing seems he had used this sharp device all over my body including my neck and face he said that my legs muscles are very weak he said that could be the spine or the perifual neuropathy getting worse my doctor said she thought it was sensory neuropathy i cant use my mobility schooter as i cant feel the levers i had a phone call i have to have a nerve conducting test on the 8th of may i am terrafied as i have a kneedle phobia also am mri i hate small enclosed spaces a spinal test is a monofilament test the same as a nerve conducting test please i am getting worse i cant feel the heat of water like bath water i cant take things out of the oven have burnt myself . i have other disabilaties fibromyalgia perifual neuropathy calcafied tendonitus and bursitus osteoarthritus osteophorisis vertigo overactive bladder overactive thyroid cataracts on both eyes tennis elbow both arms the start of copd costochondritis i dont need and more i cant feel my hands at all this is scary please advise .

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I'm so, so sorry you're having such a difficult time of it. The only thing I can possibly help you with is nerve testing. There is no need to be afraid as it is completely painless ~ at least if it's the one I'm thinking of. You are trying to deal with an overwhelming amount of difficulties & need support. I hope you have someone at home to help you. You didn't mention where you live ~ Canada, UK, USA etc. as that may be a factor for how to get help. Don`t waste your energy by being afraid on the 8th. I'm fairly sure they'll put little patches on various parts of legs, arms etc & these will be linked to a machine that tells them what they want to know. I`ve had peripheral neuropathy for 20 years now & I can only assure you you're not alone in your pain. It can be a bit of a nightmare. I eventually found that Pregabalin dulls the pain enough to make life a bit more bearable. Good luck & please try any way you can to get some more support. Sending much love, xx

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hello thank you for replying sorry for my spelling i cant feel my hands and i dont know how much preasure i am putting on the keys i live in the uk a village called brafield on the green northamptonshire its about 60 mile from london i do have a partner its hard to explain i was in a lot of pain before i had this numbness i was given an electric wheelchair by the whelchair service but i still try and walk with a walking frame to stop the muscles in my legs deteriating it hurt like hell but he just say so you can walk ok you lied sorry not a good relationship he does not want a disabled partner this might sound odd but its worse since i have had this numbness all over my body it has made life hell i cant feel anything i cant feel how hot or cold water is so have to have him test how the water is before i have a bath i cant take anything out of the oven as i have burnt myself and did not know i have also cut myself it was only when i saw the blood i realised ,my life has changed i have to be so carefull i am sitting here feeling so emotional i just want to cry i need a hug so badly i am terrafied of having the MRI as i have claustrophobia i have searched and have seen that they have MRI scanners with one side open and they have anouther one its an open MRI its just a chair that you sit in but i think there is one in london i do use my wheelchair in the house and i can manage the controlls but i cant use my mobility schooter as i cant feel the levers and i cant walk in a straight line i trip over my own feet this might sound odd all i feel is numbness no pain i have osteophorisis i fractured my spine 3 times last year will i be able to feel any thing if i break a bone so scary sorry feel so alone i have not ben out by myself for 4 months its hell .

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Hi Sam, I`m so sorry & there's a virtual hug heading your way now! Not as good as the real thing, but please consider yourself hugged! I suggest you join a FB group called Hands of Friendship. There's loads of people like us who are living lives of pain/weakness/isolation/ illness & the kindness & support you`ll find there will help you not to feel so alone. Also, feel free to friend request me on FB if you want. I can be there for you anytime. I live in Tayport in Fife, Scotland & would be happy to hear from you. Sorry I can't be of more help, but, if you do nothing else, at least reach out for some support, in some way ~ you truly need & deserve it. xx

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hi thank you so much i have lost all my so called friends and my family dont want to know i am told i am lazy and there is nothing wrong with me .where do i find this group please i love scotland i have been there many times and thank you for the hug i needed it xxx

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Hi Sam, you're very welcome. If you don't use Facebook, now`s the time to join. I know it gets bad publicity, but it also has its good points & Hands of Friendship is one of them. So search FB (might need to go into Playstore, can't remember) join up, search H of F, also accept Messenger, that way you can communicate more privately with new friends. Good luck, it's not too difficult & maybe next time we talk, It`ll be privately on Messenger. xxx

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hello chris i do use facebook i had to open a new facebook account as a man has hacked my old facebook account and put his email address on it and i cant get rid of it ,he works for the federal goverment grants and he has put on my facebook account that i won $700.000 he has used a photo of me and my partner i cant contact facebook they dont beleive its me ,what a mess ,thank you ,xx

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The nerve conduction test doesn't use needles they put sticky pads on. It isn't scary at all and takes about 30 mins. Good luck

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hello valarie 58 thank you i have heard some horendious things i also have to have an MRI and i am claustraphobic i have heard that there are open sided MRI and here is one where you just sit in a chair i think it is in london i live in the uk northampton i am abvout 60 miles from london the neurolagist i saw said he could not diagnose me without an MRI i had the pin prick test all over my body i had my eyes closed and i felt nothing ,thank you sheila,

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Hello Sammason57, Sending you another virtual hug. Sadly partners, relatives and friends sometimes don't seem to be able to give the support we need. It can be really hard for them to deal with. I too have been accused of telling lies or imagining things by doctors and relatives. It really hurts. Places like this site and the Faceboook Group suggested can be good places. The Samaritans will talk to you day or night which can be a comfort. I wonder if you have you talked about your fears to anyone at your GP's surgery. A relative of mine was recently terrified of an MRI and they gave her a sedative and she had it without any problem. That was in Essex. I have had the nerve tests and there was no pain at all. I think medical staff may be trained to help people with needle phobia if you do have tests involving needles. Best wishes with your tests and I hope things improve for you.

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