Tingling hands and feet saga! What a result...... well nearly.

[Marilyn1959]

Some of you may remember (or not) my post about tingling hands and feet some six months back. My GP did not refer me since the neurology dept does not, apparently, take referrals unless there is also numbness. Well now intermittently there is which is increasing in frequency. So at my GP appointment yesterday he agreed a referral.

Imagine my surprise when today I received a call from the hospital offering a nerve conduction test tomorrow!!!!! I did check that this was not a private appointment offered in error! No...All on the NHS!!!!! Can't believe my luck!!! I was so impressed I have emailed my doctor to thank him for both his care and efficiency.

Will let you know outcome, since I know several members of this community have either posted or responded to posts experiencing similar.

[Hidden]

Wow! Good on you! It took me a few months to get an appointment for an EMG! And I have tingling, numbness, pain in balls and heels of my feet, hot or freezing cold sensations, and a stabbing electrical like pain...

My EMG results were "normal." Which means only that there was no measurable damage to the peripheral nerve or to the nerve coverings... so the cause of my symptoms above have not yet been identified. : (

I have been referred to a Neurologist (urgently) and have an appointment on August 21st.

I'll let you know how that turns out.

[SheffieldJane in reply to Hidden]

Everything crossed for you too Melissa. X

My feet are burning as we speak. Scarlett - sigh!

[Hidden in reply to SheffieldJane]

Nooooooo! Hopefully it is a sympathetic reaction to reading about neuropathy!!!

[SheffieldJane in reply to Hidden]

It happens every night. I thought it was related to Psoriasis but I am beginning to wonder. I can’t put weight on my heels when I sit with my feet up, they have to overhang a cushion. They look incredibly dry even though I slather gallons of cream on them. I can also relate to pins and needles coming on very quickly if I lean on something for a few moments. That tends to be elbows etc.

[Marilyn1959 in reply to SheffieldJane]

Oh you poor thing! Don't just put up with it though Jane. You shouldn't have to hang your feet over edge as you describe. It must be so uncomfortable, as well as painful.

[SheffieldJane in reply to Marilyn1959]

I seem fine walking, it’s odd really. Oh don’t you just get fed up of this blasted condition and all it’s attendant complications?

Short rant. 😡

[Hidden in reply to SheffieldJane]

: ( Ohhh nooo.

My feet (and hands) are much worse at night... I seem to start off the day fairly "normal," but as the day goes on (especially f I don't do much walking) they get worse and worse... by evening they are totally numb, pins and needles and aching. The heels and balls of my feet have actual "pain." All my skin is DRY so I can't tell if feet are worse...

PS I just bought some Swanson 97% Natural Vitamin K Cream (with Menaquinone) on Amazon, and have been using it on my Purpura... (blackish/blue blood marks). I've noticed after only 4-5 days that my skin looks and feels less dry! It also seems to be healing the Purpura, although not as fast as I would have like... which was instantly!

I hope you do not have this neuropathy thingy!!!!!!

[Marilyn1959 in reply to SheffieldJane]

Do you know what is causing the burning. Several members seem to experience that, though thankfully I don't. Mine is more constant 'electrical' impulses, no pain or burning. It's a bit like the tingling you get when feeling starts coming back if your arm goes numb and you start pumping your hand. The difference is this is constant in both feet, hands and actually head. Strange!!!!

[SheffieldJane in reply to Marilyn1959]

Honestly Marilyn that sounds familiar too, the burning is worse.

I have given up going to the GP with weird symptoms, they treat everything in isolation and I know that it is all PMR or Pred related.

[Ciar in reply to SheffieldJane]

Mine seems PMR related,too, as it came on just before the PMR. Maybe whatever caused it also caused PMR, but I doubt I’ll ever know.

[Judyliz in reply to Hidden]

Good morning Melissa,

I have had similar problems with my feet for nearly a year, very difficult to get comfortable at night and couldn't bear them resting on the mattress, walking was mostly ok. For some reason I had

convinced myself it is bursitis in my heel. I had a hip replacement two months ago, wonderfully quick recovery, back walking 5-6 miles a day within 3 weeks, GCA/PMR behaving reasonably well so I decided I must get this foot thing sorted. I visited a foot clinic and was advised I would benefit from laser therapy and the problem was most likely inflammation in my foot. That sounds likely with our conditions. I had not heard of this before so have done a little reading, apparently footballers have it done frequently, some of them twice a day during the season and race horses also. Anyway I am giving it a go, three sessions in and definite improvement, I have booked another two and will taper them off after that, one after two weeks another after three and see what the results show.

I don't know if it will be a complete success but fingers crossed.

Judy

PMR June 2016

GCA September 2016

[Hidden in reply to Judyliz]

Wow! Thanks Judy!!!!! I have never heard of "inflammation" in the foot either, but it does sound reasonable, given our GCA/PMR! Your results, so far, sound promising!!!! Please let me know what you think overall, i.e. value for money, effectiveness of therapy, etc when you have completed your sessions. I'm really interested in know if it works for you! Thank you so much!!!!

[Marilyn1959 in reply to Judyliz]

Hi Judy,

Great result with your hip! Don't know of anyone who has had a hip replacement and is then walking the distances you are. I admire your tenacity and determination.

[Ciar in reply to Judyliz]

Please let us know how it turns out. I’ve also given up my 5 miles per day. My foot doc only wants to “watch” this after 2 steroid shots haven’t helped for long. Good luck to you Judyliz!

[Marilyn1959 in reply to Hidden]

Mine is more consistent tingling, a bit like you get if you use a circulation stimulator machine except I don't need the machine. Can now only sit at computer for about fifteen minutes before left foot and leg goes numb. Likewise sitting on the loo when constipated!!! ( too much information ha ha!). My hands and arms also go numb more frequently. I don't have pain fortunately so seems quite different to what you are experiencing. Methinks my issue may be unrelated to PMR though I can't be sure if tingling in hands and feet started before or after PMR diagnosis. After a while time scales blur, as does the chicken or the egg!!!!.....We shall see later today.

[Hidden in reply to Marilyn1959]

I know ... it's maddening!!! My neuropathy definitely started in past 4 months so I keep thinking its related to GCA. PMR or the Pred... but all doctors have said no link... so I am stumped. Good luck I hope your's subsides!!!!

[Ciar in reply to Hidden]

I have all the same symptoms, plus a strange buzzing feeling throughout most of my body, and weird mouth sensations. Things progressed slowly until late May this year, when it all became more difficult. My nerve conduction test revealed significant neuropathy with no cause identified. I’m assuming the next will be the EMG, but there doesn’t seem to be any urgency on the part of my doc. I’m interested to hear how you’re getting on. Good luck mamici1!

[Hidden in reply to Ciar]

Hmmmm? I had EMG first and no mention of nerve conduction test ? My Rheumy sent me a one sentence letter saying "good news," the EMG results were "normal." I sent her back a letter reiterating that all of my symptoms were still there and had to "beg," for a referral to a Neurologist. She was just going to drop it as the results were normal. : (

[Marilyn1959 in reply to Hidden]

I will be interested in your progress. I didn't have EMG only nerve conduction test. I thought they were one and the same thing? He has said that since nerve test fine it must be PMR related.

[Hidden in reply to Marilyn1959]

Hmmmm? Perhaps you are right.... I may have been thinking of the Nerve biopsy test.

[Marilyn1959 in reply to Ciar]

Let us know how you get on Ciar. I certainly have the strange consistent buzzing feeling at all extremities. I do however have a very low pain threshold, so am wondering if I am at early stages, therefore no detection of neurological problems. My GP eas also concerned because I rely on playing piano for my job - I think this played a part in my referral at this stage. During test my whole body jumped to the slightest twinge, which tends to suggest nerves are overactive rather than underactive if there is such a thing.

[Ciar in reply to Marilyn1959]

Certainly will. I seem to be different from everyone here in that my nerve conduction test is positive for neuropathy. I’m thinking that my issues are probably due to more than one problem. I’ve got cervical spinal stenosis from 3 disks, nerve damage in my sacral spine and I might be having chemical sensitivity issues, too. None of this was causing any numbness and tingling until right before I got PMR, however.

[Dewdrop456 in reply to Hidden]

Good luck!

[Hidden in reply to Dewdrop456]

Cheers!

[SheffieldJane]

Everything crossed for you Marilyn. Let us know the outcome. X

[Marilyn1959 in reply to SheffieldJane]

Will do.

[stellafmdm]

Hi Marilyn1959, I have tingling feet too especially the soles. I'm getting it investigated but without much hope of a cure! If it keeps me awake at night I find Paracetamol does the trick and I can sleep again.

[Marilyn1959 in reply to stellafmdm]

Let me know the outcome of investigations Stella. Hope you can get to the bottom of what is causing it, especially as it is interfering with your sleep.

[stellafmdm]

thanks Marilyn, I'll keep you posted. Just waiting for an appointment with the Podiatry people.

[Marilyn1959 in reply to stellafmdm]

All clear result from nerve conduction test. GREAT NEWS. Guy doing test can only conclude it is all PMR related. This disease has a lot of symptoms eh?

[PMRpro Ambassador in reply to Marilyn1959]

I suspect it may have something to do with blood flow supplying nerves. But who knows.

[SheffieldJane in reply to Marilyn1959]

That has to be good news Marilyn! Back to the drawing board.

[stellafmdm]

Wonderful Marilyn! I’m so pleased for you.

[Dewdrop456]

I am pleased for you and wish you luck.

I too have posted on here about this problem. I have bothered several doctors about it. Finally I asked if I could be referred on to someone who could tell me what was causing the pain and numbness. The GP. said that they don't have enough budget at the practice and so they have to refer patients onto a physiotherapist and then they can refer onto the hospital. It's rediculous. I got so desperate one night ,whilst suffering from excruciating pain that I turned to YouTube. I discovered a wonderful 'Chin tucking' exercise which brings some relief .

I would be very interested to know how you get on.

Take care and best wishes.

[Marilyn1959 in reply to Dewdrop456]

I will check out chin tucking exercise dewdrops, though I might have to find my chin first!!! HA, ha. Keep me posted how you get on.

[Dream21]

I am so glad you got an appt. I have tingling in hands, feet, legs, head, too. I have GCA, TCA, Fibro. I had the nerve conduction test. Three out of four hand nerves were slowing, not in legs yet. He says he sees this in Rheumatoid Arthritis patients. He said nerves could start slowing in my legs, too. Do you mind sharing your disease? Is this common in all inflammatory diseases?

Good luck to you. I am so glad you are getting the tests.

[Marilyn1959]

Hi Dream21. Love your username! I have PMR and tendonitis. I am not sure about whether it is a common feature of anti inflammatory diseases, just know several members of this community appear to have similar symptoms. However PMRPRO has suggested it could be to do with blood flow supplying the nerves, so I shall do a bit of research on the net! I am a smoker so blood flow could be an issue due to clogged aretries? ???

[Ciar in reply to Marilyn1959]

I’ve read about this on the web and most places say autoimmune inflammatory diseases can cause neuropathy, but they never mention PMR as one of the diseases. Maybe it’s just down to the fact that they just don’t seem to care much about PMR.