sensory neuropathy : i have been told i... - Neuropathy Support

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sensory neuropathy

mason
mason

i have been told i may have sensory neuropathy it started about 2 weeks ago when i got up my legs felt so heavy and i have tingeling in my arms and hands and i feel sick

i also have fibromyalgia perifual neuropathy calcafied tendonitus and bursitus osteoarthritus osteophorisis vertigo eating phobia that i have had for 20 years i have a gastronamy peg in my stomach overactive bladder overactive thyroid cataracts on both eyes tennis elbow copd costochondritis needle phobia skin cancer on my face and i had lung cancer in 2014my husband is my carer and i have an electric bed as i cant lie down flat and an electric wheelchair i need advice please for sensory neuropathy please i am in so much pain but i cant take pain releif severe side affects .

12 Replies
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Hello Mason I’m so sorry for what you’re going through and a lot of those things are similar for me. My advice to you would be to ask the doctor to give you a medication to help with our Nero transmitters from the brain and the nervous system and it’s it’s not a pain med it’s actually a med to help it may help. I had a chemical in balance in the brain my nerves were shot at you nervous breakdowns in previous years before and the doctors gave me clonazepam which helps with my PTSD and they also gave me Pristiq as it helps with my brain and the Nero transmitters and nerves were certain chemicals which also affecting my body I still suffer from severe atrophy I’m on baclofen for that it’s the same as a gift for MS but it’s also good for muscles and it helps me but it doesn’t take away the pain every day is a struggle to get dressed to to even put my hair in a ponytail and put it even just some mascara and eyeshadow on just to feel beautiful and I have been told I’m going to end up in a wheelchair scared to death about that and I want you to know you’re not alone and please you can talk to me or anyone here anytime will always pray for you and just try to stay positive and and stay away from those toxic people who are negative you don’t need that keep the love and support and your husband is the caregiver as mine is too but he works a lot of hours and he’s just a wonderful husband I am so blessed by the Lord that I am with such a wonderful man and when I cry he cries. We’re all on these are difficult journeys with her harder than most peoples as we have so many ailments that set us back but we learn how to work around them and make compromises For our body so that we may do things as best as we can. The muscles the tangling the burning sensation numbness maybe and muscles feeling like bricks that you can hardly move I feel for you and I’m sure lots of others on here do as well as we all go through that I know I sure do. And then to make matters worse I’m getting lymphedema treatments that are working which is great but now my hip has been going out for the last few months got worse than last month and now I’m going to have to go for an x-ray because the doctors suspect I might have a fracture in my hip and even if I do I can’t have no surgeries and so if it is fractured that’s more pain for me I can’t even walk break is my hip gives out and I have degenerative disc disease in my spine neuropathy I have it all over in my body it affects my Eyes My nerves my muscles but I also have atrophy I have hyperthyroidism and have a benign tumor on my right kidney went through Botox injections with Dr. Gray the head of the urology department for six years where I had Botox injections twice a year extremely painful but he gave me medicine to help me was an excellent doctor and finally I was able to just talk control my bladder on my own and I still do where the bladder leakage pads but it’s milder than before it was horrible when I have the prolapse after having a big tumor in my stomach which was attached to my ovary when they shrunk it because it was the size of a watermelon I had a prolapse and my bladder went right through my vaginal wall so I went through all that and it seem to help as best as it can. I’m trying to show you that you can have lots wrong with you but you must be your own advocate ask questions no question is stupid feel your daughter is not doing what needs to be done then perhaps you need to take action as it’s your body and your needs there at that are at risk. Hopefully you’ll ask your doctor about medicines for the nerves in the Nero transmitters because it’s all it’s all intertwined and very complicated but the meds out there and is different for each person. I hope you’ll ask your doctor questions about Nero transmitters in Brain and about medicines that are out there to help with that. what are you got to lose right ? My prayers go out to many hugs and lots of love and support and if you have anything you wanna talk about it anytime just message me and I’d be glad to talk to you welcome to the group story that you have to be is sick that you had to join this group as to what is wrong with you but I will pray for you as I do everybody else and I hope you have a wonderful and love loving day and I hope things start to get better for you and may the Lord bless you and guide you and fill your life with his warmth and his love and protect you and watch over you amen 🙏

mason
mason
in reply to franklin1970

hello franklin1970 my name is sheila i am so very sorry for everyting you are going through i usa a wheelchair already for the perifual neuropathy and vertigo i also have falls more now i have to see a neurolagist i am told i was told to have a blood test but i have a needle phobia as i was in hospital in 2017 and things went wrong i try to walk with my frame as much as i can but i am finding it hard my feet feel like i have weights on them my hands are tingeling all the time i cant feel things like trying to pick up a pen i cant feel the pen i keep stretching my hands but it does not help i cant think clearly and my husband said my speech is off he said i am not making sense you mentioned nero transmiters sorry i dont know where to look for information on sensory neuropathy i am having difulity i cant feel my keyboard so i find myself banging it with my fingers as i cant feel it does this get worse i dont take medication as i have bad side affects if i take 2 paracetamol i get heart palpitations if i take some anti sickness pills i get a crawling sensation all over my skin i am getting very worried as my eldest stepson is getting married in america in march and my partner is going to the wedding he will be gone for 10 days and i will be at home with my 2 dogs and no one to help me .do you find yourself getting emotional and crying .

franklin1970
franklin1970
in reply to mason

Hi Sheila I am so sorry 😐 for what you’re having to endure and I send you prayers and hugs 🤗 I have problems with my vision dropping things and loosing all the feeling in your hands or my legs are like led the muscles and I like you do leg exercise in a chair now my right hip is done as I can’t walk as my right leg turns outwards. My pain Doc said it’s my body’s way of adapting to the hip pain. I am fighting fatigue and pain and not sleeping good as I wake up 4-5 x a night. Occupational therapist is coming to my home today to fit me for a wheelchair and I am upset and yes I do cry hard and yes my husband is going to be going on a trip with our one daughter and I will be all alone and I get scared and worry if something will happen. I can’t walk any long distance or a block as my legs give out from my Degenerative Discs Disease damaged vertebrae and slipped disc in lower lumbar and my legs throb and burn my muscles. My husband and I went to our other daughters place and had supper and it was lovely except I had to climb stairs to get into their house and took me 2 days to recover and for peripheral neuropathy just look it up on YouTube and it will tell you or I believe you can receive information on it from the Autoimmune diseases website.ca. I can’t type so I use microphone on texting and it does it. I hope I was able to help you and my heart 💜 and prayers and positivity and hugs 🤗 go out to you amen 🙏

mason
mason
in reply to franklin1970

hello so sorry you are going through so much can i ask how long did it take for you to see a neurolagist please .and what tests did they do .

Yes I can’t lay flat as I have a huge hernia that has opened my abdomen and only a thin layer of tissue is protecting my internal organs so I wear an abdominal binder. My body hurts so bad and I take one day at a time. I have a broken knee 2 torn shoulders left squished elbow pad and slipped disc in lower lumbar vertebrae damaged from Ostio I can’t walk for long periods of time as my legs shake uncontrollably and my legs give out and with a bad hip I have fallen so many times in last month I can’t even count. I am so terrified as they are fitting me for a wheelchair. I am awaiting for my Occupational therapist appointment, but bit of a wait. I beat renal failure 2x dealt with cancer and brain tumour size of walnut that was benign, but I had it since 1991 - 2015, when they shrank it. I thought I was gonna be only using the wheelchair for long walks that my body can’t handle, but am dreading of the use of a wheelchair, that I will fight off for as long as I possibly can. Nice to meet you. God bless you amen 🙏

mason
mason
in reply to franklin1970

hello so very sorry i alrady have fibromyalgia and perifual neuropathy so my doctor thinks its sensory neuropathy ,please dont be scared about the wheelchair i have an electric wheelchair and it has opened up my world that was so closed i can stay in my pyjamas or get dressed but with the joystick on the whelchair you can go anywhere all the things you could not do open up to you and it also takes the strain away from your family i love my wheelchair i have more independance kep in touch thinking of you xx

franklin1970
franklin1970
in reply to mason

Oh yes that’s right so then just look up sensory Neuropathy and there’s lots to read and learn.

mason
mason
in reply to franklin1970

thank you .

franklin1970
franklin1970
in reply to mason

Hi Mason I did some research and I took pictures so you can read up on this. Hope it helps!

mason
mason
in reply to franklin1970

ok i will look for them bless you take it easy and please keep in touch xx

I take Ondancetron still for nausea it helps and Baclofen for muscles and Pristiq for my brain.

thank you so much i rearly hope you get an electric wheelchair i hate being in bed all the time with an electric wheelchair you can go and sit in the garden ,take care ,

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