Neuropathy I am new to this condition

[orange33]

Hello

I have RA and have now got Periferal Neuropathy. I find now my hands shake is this normal. Due to see neuro Dr next month.

Had all scans.told nothing more can be done?

[martino]

In my rather limited experience when you have neuropathy you have to look for management of the condition rather than cure. Seeing a neurologist is important. Make sure you list the questions you have and try to get answers. Sorry but I don’t know what RA is.

[orange33 in reply to martino]

Hello martini

RA is Rheumatiod Athritis. I may have spelt that wrong?

This is one nasty condition.

Thank you for your reply.

[martino in reply to orange33]

I realised after I wrote that RA was rheumatoid arthritis. You have my sympathy as I know how awfully painful that is. Make sure you know what you want to ask the neurologist about. Also make sure the neurologist is aware of the shaking. You may need a DAT scan if you have not had one.

[orange33 in reply to martino]

Thanks for the reply. I will ask.

[franklin1970 in reply to martino]

There’s meds for hand tremors as I suffered this for so many years and I’m on a medicine that has almost stopped my tremors entirely. Good luck at the Doctors. 💪🏼🙏🤗💐

[Karjade]

I have peripheral neuropathy which is mainly in my feet. They feel numb, burn and tingle and it is a condition that seems to take over your life. I have been told it is progressive and it is already into my ankles and lower legs. I have had numerous blood tests which are all normal, a nerve conduction test which was normal and MRI scan on my lower back which showed wear and tear. I am now trying Lidocaine patches which were prescribed by the Pain Clinic but my doctors will not prescribe them as they are very expensive. Even the Pain Clinic had to get funding for them so I was not surprised that my doctors will not let me have them. If these do not help I can try a Lidocaine infusion. I have tried also Amitriptyline, Lyrica and Gabapentin but awful side effects with these drugs. I have had peripheral neuropathy for nearly three years and I will not give up trying to find something to help the pain. Good luck with the Neurologist and please let us know how you get on xx

[orange33 in reply to Karjade]

Hello and thanks for reply.

You have described my condition perfectly. Mine started 3 years ago too.

I haven't been offered the drugs you have except Amitriptyline,which I refused as it's also a antidepresseant.

Sadly this have also affected my hands.

I have had two infusions of Rituxamab (spelling may be wrong)

I do have RA an I'm methotrexate

I will let you know how my vist to the Nuero Doc went

I wish you a pain free week.

[franklin1970 in reply to Karjade]

Karjade I am also going through this again like you and I keep popping out my knee caps. So painful along with Neuropathy. I trying to get me to a Neurologist to see if there’s anything they can do anything. God bless you amen 🙏

[Karjade in reply to franklin1970]

Hi. I am only under the Pain Clinic at the moment. However he is organising an appointment with the Vascular Clinic to test for peripheral arterial disease (clogged arteries) in the legs. Hopefully I have not got that! Take care xxx

[orange33 in reply to Karjade]

Hello, Good luck with the clinic. xx

[Karjade in reply to orange33]

Please let us know how you get on with the neurologist. This is a horrible and frightening condition. I have today had some blood tests for B12, B6, Folic Acid, Vit D and Iron to see if there are any deficiencies. Every day I seem to be getting worse and my family and friends do not understand as they have never heard of it! Take care and hope you find some answers xx

[orange33 in reply to Karjade]

Hello

Off to neurologist Wed.

I will let you know how it went.

I have had so many bloods done,feel like a pin cushion.

xx

[orange33 in reply to Karjade]

Hello

I'm surprised you have not had these bloods done before!

I hope you hear from the clinic soon. I tend to wait a week or more then give a ring just to make sure it on the list.

Seen the Nuero D again was told(it's rare and difficult to treat) however I have had two infusions of Retuxamab and may try adifferent infusion, I've forgotten the name so have to do a bit of research on that. I think it is over several days.

I will think on that one as it is very expensive anyway and maybe it will be refused for me.

I really wish you well.

Yes I have met with a blank stare,so I just say it's a neurological condition. All the best xx

[Karjade in reply to orange33]

Hi. Found out I am Vitamin D deficient so now taking Vitamin D3, B12, Ferritin and Folic Acid are fine. Vitamin B6 had to be sent away to another laboratory so will not receive results yet. Read that a deficiency of B6 can cause peripheral neuropathy which was very interesting! I have been prescribed Lidocaine patches by the Pain Clinic for my feet which do not seem to work for me and they just fall off anyway! He said he could give me a Lidocaine infusion which may be the one that you are thinking off. The Lidocaine patches are very expensive and if they did help I cannot see my doctor prescribing them. Hopefully receive the B6 result soon. Have you had a blood test for this and Vitamin D? Good luck with your infusions xx

[franklin1970 in reply to Karjade]

Awe man bud. I pray that for you not to have that. I have Lymphedema and have had thrombitis ( clots in my left calf.) I am on beta-blocker for heart. Beat renal failure twice and survived by the grace of god! I will keep praying 🙏 for you bud.

[Karjade in reply to franklin1970]

I have been waiting 7 weeks just for an appointment at the Vascular Clinic and they still say they cannot give me one as short of doctors. Probably won’t even get an appointment until next year! xxx

[franklin1970]

Get your doc to try you on Flexural (muscle relaxant). I been on it for 2 months and it’s helping with my Neuropathy pain. Something to check on. Welcome here we’re all positivity and compassion and strength and hugs 🤗 and listening. I hope and pray your journey gets better and pain lessened.

[franklin1970 in reply to franklin1970]

Oh! Also your Rheumatoid Arthritis is so bad. I was diagnosed with Ostio after being Missed diagnosed with R. A. When I was a teenager and after many fractures and broken bones and my knee. I take 1200mg of Calcium with 1000iu of vitamin D. I am also getting cortisone shots in both my knee caps as the kneecaps keep popping out and that’s all they can do. But lots of calcium and vitamins. So try all the advice everyone has so graciously shared with you. Have a lovely 😊 day!

[orange33 in reply to franklin1970]

Hello

Oh dear you really have had a nasty time. Thankfully my RA was well under control ,but it came as a shock when the Neuropathy kicked in.

Are the two related? I suspect so.

Thank you for the information.

I wish you all a good pain free week and more.

[franklin1970 in reply to orange33]

I wish the same my dear. I suspected she could be related something to do research for sure. Yeah I thought my neuropathy was under control with the new muscle relaxer and I’ve been on for about two months now but I woke up periodically through the night with burning hands on fire and legs cramping and feet cramping so it actually settle down so that’s goodbye yeah and I also wish for you to have pain free week as well and God bless you

[franklin1970 in reply to franklin1970]

Hi friend how are you doing? ☀️☀️☀️🌈🌈🌈🌈🐾🐾🐾🐾🤗🤗🤗🤗🤗🤗👣👣👣👣👣❤️💐💐💐💐💐💐💕🌈🌈🌹🙏🙏🙏🙏🙏

[unhappygal]

my arms go tingly and legs and feet burn all day long. the gabapentin only helps a little. i'm so sad. my vision got worse, and my feet feel numb and toes get cold quickly. feel like crying every day.

[orange33 in reply to unhappygal]

Hello

Yes I can understand your frustration at this awful condition. I have very goods and very bad days. I wish Docs would understand how debilitating it is. My very best wishes and I hope you feel better soon.

[franklin1970 in reply to unhappygal]

I sorry dear friend of what you’re going through! Gabapentin was a med I was put on when I had base skull fracture with cranial leakage and it made me very depressed suicidal thoughts and didn’t feel like myself at all. There’s other meds that might help you more Pristiq or Busporine. The side effects of our meds are sometimes worse than the disease itself. Remember! It’s your body so you be your own Advocate as you and you alone have to live in your body fighting all these diseases is so hard and positivity as much as you can to help. Keep a pain journal and keep track of your diet by logging your meals down and this will help you and your doctor to understand you the patient and work with you for a comfortable plan that benefits you and your needs. I mean after all,” that’s all we need. Remember we’re all STRONG 💪🏼 SURVIVORS.

[franklin1970]

I wish the same my dear. I suspected she could be related something to do research for sure. Yeah I thought my neuropathy was under control with the new muscle relaxer and I’ve been on for about two months now but I woke up periodically through the night with burning hands on fire and legs cramping and feet cramping so it actually settle down so that’s goodbye yeah and I also wish for you to have pain free week as well and God bless you

[franklin1970]

How do the Lidocaine patches working so far? How much does it cost? I pray it gets better for you and your loved ones. Hard sometimes our loved are upset cause they feel helpless to help us, as they don’t understand these horrible diseases, as most of us have multiple diseases to which there’s no cure, but educating families friends and ourselves would help us all have healthy understanding amen 🙏

[jobeth]

I started having neuropathy in my feet. Started in my toes and has progressed to the rest of my feet and sometimes up my leg. I went to a chiropractor in January. There is a treatment for neuropathy. I went to the office for a chiropractic treatment, then had a shockwave machine on my feet followed by a short laser treatment to my back and then lay on a magnetic heat bed for a while. At home I was to take three different supplements and use two different therapy machines twice a day. One was a near infared heat and the other was an electric pulse. After the treatment schedule my neuropathy did improve but I was not good at doing the treatment so I did not get full recovery. The two machines are mine to keep so I do use them occasionally when my feet start to really bother me. I noticed that it did really help the pins and needles feeling. I mostly just have numb toes and the ball of my foot. I will start using the therapy more often soon. I just moved and have not gotten things settled yet. The treatment was expensive, but the only thing I know of that has a benefit other than medication to treat the symptoms. The purpose of the therapy is to increase blood flow to the veins around the nerves and to help regenerate the nerves.

I have polycystic kidney disease and have been on dialysis for about three years. I am assuming that is what caused the neuropathy. I am not a diabetic.