Numbness and tingling...update for friends with same issues

[Ciar]

Hello to everyone dealing with numbness and tingling! Here’s an update on my ongoing issues with tingling just about everywhere (especially arms and legs) and numbness and pain issues in my hands and feet. I just had an appointment with a Neurologist/physiatrist at the university hospital in Portland, OR. I’m confident this guy knows what he’s doing. After checking me out and looking over my previous tests, he told me he did not agree with the neurologist who did my earlier nerve conduction test. I’ve never had a doctor come right out and disagree with another doctor before. He didn’t think there was enough information on the test, and also my symptoms and history did not indicate I have neuropathy. He is going to repeat the test more comprehensively in about 2 weeks. Today he thought I more likely have carpal tunnel in my hands, didn’t say what he thought about mt left foot, and that my right foot ganglion cyst had done some nerve damage (but that is not neuropathy). He said neuropathy is a bad diagnosis to have, and that whatever is causing my problems would likely be passed off as symptoms of neuropathy and not be treated if I have “neuropathy”.

So...I’ll be coming back for more electrical torture, and be really hoping he can pinpoint what is going on with my messed up body. Also hoping I don’t have “neuropathy” so that they will try to fix my @*$!& foot so I can walk again!

[SheffieldJane]

Everything crossed for you Ciar. He sounds like a guy you can trust. Let us know!

[Ciar in reply to SheffieldJane]

Will do, thanks for the support.

[Hidden]

Wow! Interesting! So the plan is to re-do the nerve conduction test and go from there? I am so happy for you, if it is NOT neuropathy!!! I don't think I'll be as lucky... I'll post later re: my condition. I do hope this all works out, they find the cause, it's NOT neuropathy and they are easily able to correct all and let you get on with your life!!!!! My fingers and toes are crossed and I'll keep you in my prayers! : )

[Daisychain12 in reply to Hidden]

Melissa I am waiting eagerly for your update xxx

[Ciar in reply to Hidden]

Thanks, Melissa. I doubt I’ll get off that easy. I still think I have more than one reason for this. But I will post any progress!

[Hidden in reply to Ciar]

Good luck! I hope it all turns about for the best... it is miserable isn't it? ☹️

[Daisychain12]

Oh please update us. I know the tests are unpleasant but they do provide information. Good luck. Xxx

[Ciar in reply to Daisychain12]

I’ll post something in a couple weeks. Thanks.

[May10]

I have had numbness and tingling in my hands since the first time I took Pred. I have had nerve tests done and told there is no damage. My rheumy who I no longer see is convinced it is Carpel tunnel. At one of our meetings he decided to give me a steroid injection in one hand. It was awful. I could not move my hand for2 days and when the injection

wore off it was back to square 1.

I hope it will disappear when I am finally off Pred.

[Ciar in reply to May10]

Carpal tunnel is something that has come up on this forum...may be related to PMR? It is good you don’t have damage.

[Grants148]

I have had numbness in my hands and feet for a number of years,even before PMR,l had carpel tunnel tests which were negative and an MRI scan on my neck in case l had degeneration of the spine. They did not find anything wrong and l still have no idea what causes the problem. PMR has made it worse with numbness in my legs now as well .Please let us know how you get on ,l hope that the test results will enable you to have treatment to make you feel much better.Good Luck Ciar.

[Daisychain12 in reply to Grants148]

Me too darling I am exactly the same xxxxx. Isn’t it scary and maddening xx

[Ciar]

Thanks. I wish these weird nerve symptoms were easily sorted and treatable, but alas, they really aren’t. Good luck to you too, Grants148.

[Daisychain12 in reply to Ciar]

I just don’t understand how we all have this yet apparently it’s “ nothing” xxx

[Ciar in reply to Daisychain12]

Oh it’s probably something, but they often just don’t know why we have it, or how to fix it.

[Grants148]

Thanks Linda andCiar,seems like we may never get an answer xxx

[Josieswolf]

Hi I spent two day in hospital last week with tingling and weakness down my right side. They though I had had a minor sensory stroke. After a full head and spinal cord MRI with contrasts I have mild small vessel disease in my brain. So just a thought maybe you should ask for full MRI with contrast. I hope you get some answers and relief soon. Xx

[Ciar]

Thanks for the suggestion...my internist had the same idea and I got one of the brain and neck last June when this got worse. Sorry to hear you have that. I passed the test on the brain, however did not have contrasts. Is what you were diagnosed with vasculitis?