Peripheral Neuropathy life changing

Posted by orsons @orsons, May 3 7:08pm

It all started with pins and needles in one foot. I left it but finally went to hospital and they said my thyroid was underactive. So I was put on tablets to regulate my thyroid but the pins and needles remained and then went to other foot as well. I went to neurology and had MRI of head and back and later that year had another MRI but apart from stenosis there was no compression. I was very ill back in 2020 with other ailments which remain which is all rather strange. This neuropathy has been life changing. I take maximum dose Pregabalin but it doesn't really help save if I come off it the pain and discomfort could become worse. I have tinnitus and gastric problems digestive issues. I am going to see a specialist to see if I might have autonomic neuropathy which I hope will be ruled out. I just cannot accept what has happened to me.

Interested in more discussions like this? Go to the Neuropathy Support Group.

gilly08 | @gilly08 | May 15 5:13pm

In reply to @roslyn2314 "Consider Restless legs Syndrome. Sifrol gives amazing relief if it is RLS" + (show)

Thank you, anything is worth a try.
I have considered RLS but wasn't sure twitching was part of that syndrome. I haven't heard of Sifrol. Will look it up.

roslyn2314 | @roslyn2314 | May 15 6:26pm

In reply to @gilly08 "Thank you, anything is worth a try. I have considered RLS but wasn't sure twitching was..." + (show)

Comes in many strengths Amazing relief for 20 years. Good luck

orsons | @orsons | May 15 10:43pm

What is Sifrol? Would it help for Peripheral Neuropathy. Never been suggested to me. Are you UK or US? I am UK so maybe not available. I shall find out though.

Sue, Volunteer Mentor | @sueinmn | May 16 8:09am

In reply to @orsons "What is Sifrol? Would it help for Peripheral Neuropathy. Never been suggested to me. Are you..." + (show)

Sifrol (Pramipexole) is a dopamine agonist - that means it prompts the body to promote more dopamine. Here is what Mayo Clinic says:
https://www.mayoclinic.org/drugs-supplements/pramipexole-oral-route/side-effects/drg-20065603
It is usually used for Parkinson Disease or Restless Leg Syndrome. There have been a few studies about using it for certain type of neuropathy, but these are at the laboratory level on of animals at present. There may be some doctors trying it as an off-label use.
https://www.sciencedirect.com/science/article/pii/S0304394023003786#s0035

I certainly hope ongoing research finds a cause, and either a cure or an effective treatment!
Sue

bowersra | @bowersra | May 16 9:18am

In reply to @orsons "Where I live there is no test of this kind which is ridiculous really. London is..." + (show)

So you are in England or going there.. I have friends in East Sussex…
We talk about the doctors and health care..
I do think they care for the older generation better there than here

gilly08 | @gilly08 | May 16 9:44am

In reply to @roslyn2314 "Comes in many strengths Amazing relief for 20 years. Good luck" + (show)

Thanks again. I will talk to my GP about it.

orsons | @orsons | May 17 1:30am

In reply to @bowersra "So you are in England or going there.. I have friends in East Sussex… We talk..." + (show)

Is that so? That's very sad. My partner has COPD and heart failure. He is looked after. Managed to get x-ray for him very quickly. Unfortunately you have a tiered health care insurance in US. I don't like that at all. I know some US citizens become bankrupt due to health costs. Unbelievable. Mind you the vets over here are greedy it's all about insurance. Some things aren't necessary to do but they do it I know my poor cat died due to insurance cover. It's all so corrupt.

bowersra | @bowersra | May 22 10:23am

In reply to @orsons "Is that so? That's very sad. My partner has COPD and heart failure. He is looked..." + (show)

I have great insurance but pay a lot for it… but I can afford it’s so I am blessed… you have to decide what you want out of live… and take care of your sure…
But even with good insurance it’s all up to doctors to get the testing and for them wanting to help…

orsons | @orsons | May 22 12:46pm

Funny I was given a quote and with all different ailments thought I wouldn't get one. I did and am seriously considering fully comprehensive private health insurance. I can afford it also.