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Walking on, walking on broken glass…

Walking on, walking on broken glass…

Those that can't do... RANT!

rantingsofamadwomanblog.com...

No Warning; This post does not contain strong language or offensive innuendos!

PLEASE NOTE: This post is not related to PMR/GCA. It is about small fiber neuropathy. If you're not interested, please do not read it. I just cant cope with any sarky comments today. Sorry. Thanks.

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I’m so sorry, what a b***er! Hang on to the ‘possibly’ word. I will be thinking of you. It’s the waiting......

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Thanks Jean54, It is the WAITING!!!!! My goodness they do like torturing us don't they??? It's all good, I'm just being a bit of a cry baby today!

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Oh mamic1, as if you hadn't enough issues with your health to deal with.

Sending you my most positive vibes.

Take care.

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Cheers Primrose! "God only gives us what we can handle... apparently God thinks I'm a badass!" 🤨

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I don't agree with that, you're a thoroughly lovely egg.

You've just been handed a bad card, you will come up trumps. And I don't mean "that" American one!

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Awe, thank you! ....but a "BADASS" lovely egg, right?

Oh God, not the American one!!!!! please!!!!!

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No, no, no, wrong; you are not a BADASS, repeat after me...I am a lovely egg.

Certainly not that American one. Bet he couldn't even play Snap!! You'll be handed an Ace card one day.;-)

Seriously though M I really hope that they can sort you out. You must wonder, when will it all end.

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Hmmmm? Okay, if you insist! "I AM A LOVLY EGG!" * with just a little bit of badass on the side* It will all end when it supposed to I guess... xxx

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Life's more fun if you are a Badass

xx

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Agreed!

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On a serious note my Mum has it in both hands and feet

This is due to being Diabetic for over 40 years ,at the age of 90 still manages to walk her puppy around the block twice a day pushing her wheelchair with Skye's lead around the handle .

Wheelchair in needed for longer trips which are few and far between with my PMR

Take note chair is used for other problems .

Helps to have good fitting shoes so thay don't rub, regular Podiatry appointments .slippers around the house, Cream you feet twice a day .

She also benefits from a foot massage weekends when she comes for dinner with me .

I can imagine you led on your Chaise lounge with those delightfully painted bright red toes waving to your OT saying I need you and I need you now .

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Wow! 90!!!! Good on her!!!! I am so happy her's is diabetic neuropathy; equally as bothersome and debilitating, but doesn't impact your autonomic nerves. That's what scares the poop out of me... no pun intended! Thank you for the good tips.. they are helpful. Until I know for sure, I will let my little red painted nails wave in the breeze!!!

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HI

On her medical notes it states she has small fibre neuropathy. Not diabetic Neuropathy . Although as you say its normally the Diabetic Neuropathy

Keep those Toenails waving

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Small fibre neuropathy is the sort of neuropathy that diabetes causes.

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Hi PMRpro, Yes, the most 'common' cause of small fibre neuropathy is diabetes, however there are other causes, such as: endocrine and metabolic disorders, hypothyroidism, metabolic syndrome, hereditary diseases, Fabry disease, hereditary amyloidosis, hereditary sensory autonomic neuropathy, Tangier disease, immune system disorders, celiac disease, Gullain-Barre syndrome, inflammatory bowel disease, lupus, mixed connective tissue disease, psoriasis, rheumatoid arthritis, sarcoidosis, scleroderma, Sjogren’s syndrome, vasculitis, infectious diseases, hepatitis C, HIV, Lyme disease... hence the 9 vials of blood, urine and genetic tests that the Neurologist ordered. My blood sugar levels have always been within normal range... so I'd be surprised if my neuropathy is related to diabetes, but anything is possible. 🤔

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Hi Melissa, so sorry to hear you are going through this. Do you think PMR could possibly have caused the small fibre neropathy? Sending you virtual hugs and strong, positive karma. x

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Thank you and interesting question teesher! All 3 doctors have said "No." ...but it is a weird coincidence!!! An other people with PMR have complained about Neuropathy too... so who knows! Some research will be done in 10-20 year (when I am dead and gone ) and someone will have discovered that PMR or Pred does on fact cause neuropathy! 🤔

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My reply was to Rose54...

Not very likely that steroids cause neuropathy - they are used to treat several varieties. It could be PMR - but far more likely it is just another autoimmune effect as opposed to specifically the PMR version.

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Oh, sorry, didn't mean to intrude. I just didn't want people to think that diabetes is the only cause of small fibre neuropathy, as I originally did. I thought I could not have small fibre neuropathy, since I was not diabetic. Apologies.

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Dear Melissa - 'radar love' coming your way right now ....

Della and Ruth

XXXX

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Hey.... I responded to this hours ago!!!! Where did it go? Silly system (or possibly User error!)

I said something like, "Thank you. I feel that love strong as anything, even across the miles... this pity party is almost over, so no tears or worries for me! xxxxx"

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Dear Melissa I also just (as yours arrived) wrote you another post and it 'evaporated' - perhaps we are getting 'messages' from the 'ether' (ha ha !!) that all this is beyond mere 'words'. I do feel very indignant for you though - you have had to deal with much more than your 'fair share' and I am thinking that maybe a mass protest 'rant' from us lot might be in order - but you have set a very high standard in THAT department.

However - you know me - the perennial optimist - I can envision many - many 'good' things to come ...

Thinking of you

XX

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"Good things to come...." well, from your mouth to God's ears... and Buddha's ears, Allah's ears, Goddess ears, Pagan ears, the Universe's ears! I'm all about ears! I so appreciate the idea of a mass "protest" rant! ...but I don't want any of you lot to get caught in the crossfire!!!! I think it's best if you pretend you don't know me! I have apparently pissed someone off and karma is working overtime! Thank you, I appreciate your words and you thoughts!

My rants are my shield... love ya, M xxxxxxxx

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But we DO 'know you' and to hell with the 'crossfire' ..... !!!

XXXX

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Absolutely

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Cheers CT-5012.

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Love you too Rimmy!!!!!!! Thank you.

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Why not use a combination of ‘pity party’.....it’s a normal reaction, and you probably need to mope for a while. Then when you are ready to find out more about it, get some more information. You know so much from this forum how much other people’s knowledge can help you.

I do wish you all the best

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🎼We're gonna party... all night long... a pity party.... all night long... 🎼

Yup, mope today, cope tomorrow!

Cheers Mary! xxx

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Mope today, cope tomorrow. What good advice. Sorry to hear of your new troubles. If anyone can handle this it's you but what a shame that you should have too. Big hugs 🌺

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Ahhhh, thanks Hollyseden, Apparently I am a "lovely egg, and that is why I am being challenged! 😂 I always thought I was a BADASS, but nope, and egg! Who knew? Thanks for hugs!

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I kinda like Badass. You can be both then 😁

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👏🏻 👏🏻 👏🏻

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My girlfriend has diabetic neuropathy in her feet and they just put her on cannabis. She's pretty happy! And doing better, by the way....😋.

Sending warm hugs your way, wishing the best for you.

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I like the way you think Twopies! Party!

Thanks for the hugs!

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Oh mamici1, I can understand how worried you must be feeling, but maybe it'll only be temporary! I'll keep my fingers crossed for you.

Seeing that picture made me remember my mum - she had psoriasis on her feet and always said it was like walking on glass. Ouch

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Thank Footfairy-1! It is what it is.. I'm just feeling sorry for myself today! 😩 Tomorrow will be another day..

So sorry about your Mum... that sounds horrible.

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Oh sh.t, what a bummer! (You see what I did there? OK it’s not good joke day for me, or you either). It’s a bit like “I’ll just stand here and get thrown as many illnesses as you got..” I know that feeling. Hopefully it will only be temporary and one of those things that just like to take a ride on the back of a serious illness and then jump off when you get better ( you will get better).

But seriously, if you can’t feel things in your feet very well, do take care to wear some sort of footwear all the time. I know it’s lovely to patter around in bare feet, but that’s the time I’ve done my toes and heels some serious damage. And if you don’t feel the damage immediately you can’t tend to it in time and lessen the damage. Sending virtual hugs x

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I did see that! Brilliant! I could have said it was a "crap," joke.. but that would have been too easy!

YES to footwear! I smashed my middle toe into the coffee table leg, about 10 days ago; but didn't really feel it... I thought, "Okay, not as bad as it could have been." Until about an hour later, I looked down and my whole middle toe was bright PURPLE! Oh I guess it was a s bad as it could have been! Since then... FOOTWEAR at all times! Good tip!

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What a lot to put up with, I would not cope at all. Thank goodness for your rant outlet and never ending ability to weave your humour into your writing. Blessings. (Eek, I've been watching too much 'handmaid's tale'.) x

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Indeed it is Pongo13, indeed it is! Thank goodness for my RANTS, without them I'd explode! ...and LOVE, LOVE, LOVE Handmaiden's Tail!!!!!

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Hugs Hugs and more Hugs

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Got em... THANKS!

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Every sympathy, you have yet again been handed the sh*ty end of the stick. Rant away it’s good for you. Wallow in your pity party for now. Sending lots of hugs.

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Thanks CT-5012! Thanks for the hugs... I got em!!!

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Oh mami so sorry, this on top of the PMR/GCA! Hope you will get some good news soon, not kept waiting for a long period of time.

Every right to rant all you need to. Hugs to you. ❤️💕

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Cheers Mstiles! .and Rant I shall!!!!! xxx

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Oh Melissa

I’m away & only just looked at this 🤬🤬🤬

Sending you big hugs 🤗 & lots of good wishes

Angela 🥂

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Awe thanks Mrs Nails!!!!! I'm a little freaked out about leaving for France on Saturday, but a girls gotta do, what a girls gotta do!!!! Hey, there could be worse things than having your autonomic nerve system fail, while drinking a lovely French wine and eating a fresh baguette, smothered with Camembert! I hope you are having a wonderful time!!!!

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I would recommend going for the French wine, fresh baguette & Camembert then more of the same until you feel you don't give a monkey's! Loads of love, Melissa, and, of course, wishes that your test results are better than you are currently imagining...Kathy xxx

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It’s such a B.Awful 🤬 thing Melissa, shame in some ways the letter arrived before you went to France but it’s all there in black n wight.

So enjoy your cheese & wine 🧀🍷🇫🇷 & the French Countryside, it’s no good telling you not to worry but do your best! The rest will give you energy to face the future, take it by the tail & then show them how it’s done!

Leave for Home today & see our lovely Charlotte tomorrow!

Best Wishes 🍀

Angela 💕

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Thanks Mrs 💅🏼! Yes, I had "almost" forgotten about the stupid Neurologist tests and possible causes of the numbness... the letter brought it all back to the foreground. And of course I had already done what SheffieldJane said not to do; Google every possible cause! YIKES! Bad idea! 😱 I will enjoy the "🧀🍷🇫🇷 & the French Countryside," for sure! Thank you. Oh, I'll bet you cannot wait to see Charlotte!!!!!! Post a photo, I bet she has grown considerably! xxx

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My grandmother would have said I had neuropathic feet because I am a Pisces, and she was a 19th-century lady not a hippie but definitely full of superstition! What is your sign?

Mope, then cope is sound advice. When you feel like coping, I'll tell you a bit about my struggles with small fiber cum autonomic neuropathy/sjőgrens. The autonomic part is limited and doesn't seem progressive, for what it is worth. And some meds help, if you want to try.

For now, just Rant. Best wishes.

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I like the “mope then cope”!

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Today I'll cry... tomorrow I'll try? Hahahahahahahahaha

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👍 💐💐

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Hmmmm? Interesting!

I'm Taurus the Bull... what else? 🤣

Ohhhhhhh, YES PLEASE!!!! I am all ears!!!!!

Send me a CHAT message if you'd like...

THANK YOU!!!!

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Think it’s around here . Carol

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So sorry! rotten for you Melissa, I hope you get sorted soon and no more problems. Love and virtual hugs xxxxx

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Cheers stellafmdm, It is what it is, right? Things could be worse. 😬

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This must relate to the blister I pointed out to you on Saturday that you couldn't feel!!! I hope you get to know something sooner rather than later. It's hard I know but try to relax as you've got some time to wait before you get a definitive diagnosis, if then. Hope you can feel a little better tomorrow, it's always worse the day you get these letters as you want to know the answers right there and then ....even then it will take time - I'm putting things into perspective as I've been doing it all year and still haven't finished. Please be careful and wear footwear at all times, my husband is the worlds worst and his feet are a mess, stubbing his toes and the nails falling off..... but he does have diabetes as well as the rest. Don't think I've mentioned this but I've got numb big toes that started with pins and needles and pain, I also have the same patches on different parts of my legs, more coming each day, they hurt but at the same time are numb! I also get it on my top lip, tip of the tongue and nose! I've switched off for now, for my own sanity - mainly because I'm on the dreaded merry go round again following consultation with my Neurologist last week - she says it's not the CNS (Central Nervous System) ie my MS - she says its coming from the nerve endings so next week I see my GP for another referral to whoever's lap that falls into. I haven't got the strength to do any research - as my lovely sister Norma says, 'don't worry it might never happen then if it does use the energy you've saved!!!' Pity I'm not coming to Brighton to my sister's we could have a pity party! I'd love to know if, like you and I, patients with both GCA and PMR are more prone to all these co-morbidities? In the meantime keep smiling and ranting and look after those feet!....xxx

PS: I went to Aquarobics last night and loved it, not too hectic - she used a 'slow tape' apparently and there was me thinking I'd cracked it - it's twice weekly so going again tomorrow - hope it's not a fast tape or I'll be 'missing a beat'. Seriously it made my limbs feel lighter than I've known didn't hurt my neck either - my Neurologist said it was the best thing for my complaints and she was right.

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You're right Telian! ...and thanks! Yes, it (the feelings of dread and desperation) are always worse the first day. Things then become normalised and we adjust and accept... as we have no choice!

YOU, my dear are AMAZING! With everything you have (and have had) going on with you medically, you just exude life, vitality, energy! And your smile lights up the room! You are an inspiration!

Good on you Aquarobics! Keep it up!

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Morning Melissa, thanks for the kind words and encouragement, see we all need each other - am I admitting to that! I'm tired - had a shit night no sleep until 5am then at 8.45 some kind soul decided to cut their tree down, felt like they were cutting the legs of my bed I woke with such a start, now I'm groggy, by the way it's a divan! Sods law as they say.

Well today is sunny and even though tired, makes me want to finish jobs before the winter sets in - got to paint the bits where we had damp proofing done last week, we got white render - and got 3 fence panels left to finish painting among other bits. Meeting my friend for coffee at lunch time so better get showered before she rings, not felt this tired for a while, think an afternoon snooze is on the cards, if I've got the time - oh and Aqaurobics tonight! Think some sensible planning needed here. xxxx

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Sensible planning for SURE! My goodness you will do more today than I have done all week!!!! Painting!!!! My shoulders hurt thinking about it!!!! My sleeping pattern is sleep for two hours, use toilet, sleep for two more hours, use toilet... I am up like clockwork at 1:00, 3:00 and 5:00 and then 7:30 for good... It is weird how my internal body clock is so very precise! 🕰

Maybe try to grab a nap!!!!

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I thought all that had passed me by - it's 'normal' for you on your high doses - I recall those consecutive nights of 'murder' exactly as you describe. I don't know what was wrong with me but I did have more discomfort 'you know where' - feels like on the edge of a UTI, hope to god not - drank plenty of fluids, took a potion bicarb and paracetamol and still couldn't nod off - get over tired we do... I had to nap more so then and I would say you need to to get through. It will improve as you get lower, promise. Re the shoulders I've only just started this year, to be able to do bits and bats, still have to be careful, got my son lined up if I need him, the negotiations take more out of me than doing the job myself though!

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That is my sleeping pattern, Melissa. I am borderline Diabetes. Because I have had numbness in my feet, esp the left foot, and the waking all hours for loo, I thought I must be diabetic. I don't drink enough, despite being thirsty. Saw diabetic nurse last week, for advice. A few days after your appt, I saw my Vascular surgeon, who wasn't as thorough as your dr...no test. Pe

ripheral Neuropathy. Said doesn't know what causes it, nor the discolouration of legs. Blood flow and blood vessels all fine, so, I suppose, at least that's good.

Keep on going, Melissa. You've come a long way girl. x

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Wow! Very similar symptoms, huh? Yes.. my legs are discoloured (usually light purple! Not a GREAT colour for legs, really!!!!) and cold to the touch! My feet are always FREEZING, but usually warm to the touch. I am not board line diabetic, that I know of, as all my glucose tests have been within normal range... I had the EMG and was told it's not peripheral neuropathy but now Neurologist thinks small fibre neuropathy. So are they done with you? No further tests?

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Well Vascular says can't do anything for me, and I doubt my GP would refer me to my dear Neuro, who treated me for 13 years of GCA, before returning me to GP.I don't think anything is going to be done. My discolouration is not purple, but sh===y brown, and white patches. I used to have purple feet, cold hands and feet. I had an artery bypass, in my right thigh, 10 years ago, for various leg probs, and since then have warm hands, warm feet.....'Oh would'nt that be luvverly.'

Go to France, have a ball, don't think about what it is/isn't/could be.

Carpe diem. x

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Butting in here listening to you re discolouration of legs. Hubby has purple legs and feet, awful and ugly oedema with what looks like the biggest blister from just below knee to ankle - they say it's not his diabetes but his very weak heart - blood settles under the skin hence the darkness, very shiny but no ulcers. He has cold feet to touch but he doesn't feel it. It's interesting you had an artery bypass how did you manage to get that? Is it something they can do while awake as he can't have any kind of sedation?

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I had an artery bypass because of poor circulation and also an ulcer which did not respond to any treatments. I also had claudication in my feet, which gave me stop-start walking.They tried to do an epidural on me for the op, as my other health conditions could cause probs. I couldn't do epidural and my BP escalated and I had general Anaes, woke in my ward and asked my friend if I had had op yet? I sure wouldn't like to be awake for any op.I have atrial fibrillation and aortic stenosis. Hope you get something sorted for your hubby. All the best.

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Yours sounds more complicated but he's stable with his heart at the moment but it is poor circulation in the legs but thankfully no ulcerated legs - they look so bad each time he sees someone different for other reasons they ask if he's got a District Nurse looking after his legs. Hope you keep well and thank you for the good wishes. ATB.

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Wow... I am always surprised when I hear that a doctor has said "there is nothing I can do for you." (Unless of course it's a non-treatable terminal illness, but even then there are palliative options....) And since here is UK, I often wonder if that decision is related to ££ or the age of the patient... A few years ago I went to GP with knee problems and was told it was probably a torn meniscus, but that the NHS would not do anything about it because I wasn't an athlete and because of my age. I now need a total knee replacement... Go figure?

Carpe diem, indeed! xxx

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Well, have just found your reply in the junk mail, along with todays HU notifications, so I really don't know what's potting there, and why? I haven't anything terminal, so was upset when he said he can't do anything for me. Maybe my problem was not for his dept? When I hear the term'it's your age', I go ballistic!

To say you weren't an athlete.....the mind truly boggles........................!!!

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I know right... I was an active healthy 61-62 year old woman! I wasn’t a bedridden 99 year old! There was (is) life in the ol girl yet!

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Bummer! Hells Bells Melissa! Have some of those numb tingling bits too! I think a Pist up party is a great idea!! Hang in there EGGY. ATB

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I love that phrase, HELLS BELLS! hahahahahahahahaha

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Hi hope things get better for you

pamper

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Awe, thanks Robert! Appreciate it!

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No lectures. Just 2 words.

That S*CKS!

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🤣 PERFECT!!!!! I love it!!!!!!!

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Hugs and kisses.

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Yikes, this stuff is scary! We are similar. Sorry you have these symptoms, too, though I’m behind on the tests. I haven’t had all the sensation tests, but one foot doctor suggested I get them. I’ll be seeing my internist tomorrow and find out if that’s in my future. It is interesting that neurologists can disagree (that’s what just happened to me). Hate to say, but I’ve also had some symptoms of autonomic neuropathy...sweating gallons (before PMR), periods of irregular heart rate, bowel issues.

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Ohhhhh nooooo! I am sorry to hear that! I was truly hoping your's was not even Neuropathy, let alone autonomic neuropathy!!!! 🤬 I too had the sweating gallons, irregular heart beat and IBS all before PMR/GCA were diagnosed... I wonder if there is a connection, even though they (the doctors) are all saying there is NO connection. (?)

Hang in there! Good luck.

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Oh Melissa just got to this, well behind all your other well wishers. What a dragging awful worry it must be.The cold fear in the small hours. What can it all mean? Your poor bleeding heel when we walked to the venue and you didn’t know.

When will there be some definitive advice? What happens next?

I can only send you love and hugs during this period of uncertainty.

Do not do what I have a tendency to do. Scour the Internet for the worst case scenario and disappear down a dark hole. Sit with not knowing and have faith, that this too will be well. Stay in the moment if you possibly can and face the verdict fully conscious with all your considerable power. 💚🖤💙🧡

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Ohhhhh Jane, thank you!!!! Please, YOU just enjoy that paradise you're in!!!! No worries here! It was a bit unnerving receiving a 4 page letter that had no answers! We will wait for all the test results to come back and I have an appointment with the Head Neurology Consultant on November 5th. If nothing definitive comes of the tests, I guess they will send me to London for what is called a nerve biopsy (or skin punch biopsy). Sounds like loads of fun!!! Thank you for GREAT advice, "...sit with not knowing and have faith, that this too will be well." Thank you xxxxx

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Hi Melissa,

So you’ve moved back to Sh*tsville again. Thought you didn’t like it there 🏚.

I believe there is a street called Don’t, can’t, or won’t do. Spend a little time there.

I have peroneal neuropathy, the nerve cut during an op for knee replacement five years ago, unlike you no pain, because no feeling. Sounds horrendous.

Amazing list you posted, something for a hypochondriac to get their teeth into. None on this site I hasten to add.!!!

Hopefully they can sort you out, just such a nerve racking (no pun) time, you don’t deserve it.

Sometimes wonder when we cope, whether ‘they’ just keep sending another trial to test us. I think you must be in the top ten of the charts. Gold Disc along shortly you’ve earned it.

Monica.

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I like “don’t, can’t, won’t do”, we should all say these words on bad days and just spoil ourselves doing absolutely nothing and not feeling guilty about it.😀

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Certainly no sarky comments but I am sending the biggest virtual hug in the world. Really sorry you're going through this crap on top of everything else. Kindest regards, Mike.

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Awe... thanks Mike1964!!! I so appreciate your kind words !

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Really sorry to hear this, especially the waiting as well!..

Hope you can focus on having a wonderful time in France.....and rant if you have to when you come back!......

It's at times like this when I wish I was a man, because we blooming well over analyse things....mostly they only deal with it when they have to....

Have a wonderful time away, you deserve to.🍸

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Oooooo, thanks Longtimer! I find that to be true as well! Men (generally) have a way of compartmentalising things and not giving them a lot of thought or worry until faced with the problem or issue directly. I get so frustrated with my OH for what I sometimes feel is "downplaying" or not even considering some of the less wanted options... and he is of the ilk that there is no sense talking about unless we know that is what we are dealing with. I like hoping for the best, and planning for the worst! : )

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Yes, you are absolutely spot on....my OH can snore away when there`s a problem...me, awake deciding how to deal with a situation (possibly my health)

Have to say though, went on a course (for the mind) years ago, and he was right what he said….95% of the what if`s never happen...and we`ve made ourselves ill for nothing, stressing about it...….I often think of that, and tell my sister the same when she is analysing!....(works for me occasionally)

Keep well...x

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