Good news… bad news (?): Those that can't do... - PMRGCAuk

PMRGCAuk

11,755 members21,453 posts

Good news… bad news (?)

Hidden
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Those that can't do... RANT!

rantingsofamadwomanblog.com...

Warning; There may be one or two slightly offensive words contained in this blog post... Please do not click the link, if you are easily offended.

103 Replies
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As Gilda Radner use to say "it's always something!" Hope they figure it out soon.

Hidden
Hidden in reply to Mikb

Ahhhhh, I so loved her.... Thank you very much!

So sorry Melissa! I hope they figure it out soon for you. I do hope the results of your tests will bring you peace of mind and not consternation. I’ll be praying for you!

Good luck and stay calm in the midst of it all!

Hidden
Hidden in reply to stellafmdm

Thank you so very much!

Hi Melissa,

My husband has been having various tests,MRi x2,Lumbar puncture,numerous blood tests,hospital appointments,neurologists(never sees the same one twice).He has numb legs but also really bad pain in them sometimes.MS has been ruled out.He's had nerve testing,scans and xrays.He had more blood tests on monday and if these don't show anything they ''don't know what it is''.Neuropathy has been mentioned also wear and tear!.

Hidden
Hidden in reply to Sandradsn

Hmmmmmm? Sounds like he and I are in the same boat! I wish him luck in getting it sorted out. The not knowing is the worst. Best of luck to him (and YOU!)

England05
England05 in reply to Sandradsn

my friend has neuropathy and has said that acupuncture has worked really well...

Hidden
Hidden in reply to England05

Cool! Thanks! I was wondering about trying that if not to do anything but alleviate the symptoms! Cheers!

England05
England05 in reply to Hidden

can't hurt

One thing after another Melissa. It's tough to deal with I know. Would have thought some neurophathy was a side effect of pred. but I'm not a medic! Some good news in there for you thought regarding MS. ATB

Hidden
Hidden in reply to Pepperdoggie

Thanks Pepperdoggie! I was SURE it was caused by the PRED too... as is everything, right? : )

...but the GP, Rheumy and now Neurologist has said, "No." Neuropathy is caused by some medications like chemo drugs but apparently not corticosteroids. Go figure!!!!

Oh my Melissa! I can only imagine how your head may be swimming with all this new info to process, along with the feelings that accompany it. Sounds like you have found out some things as a result of the appointment, and ruled out others, and are still yet waiting for results in the future. A lot to sift through, like you need this s**t. Enough is enough already. No wonder you are wanting an escape, and I would encourage you to fly away to someplace warm and calm to gaze at turquoise waters, smell the salt in the air, feel the sand in between your toes, taste the delicious food, listen to the music, maybe even sway your hips to it. A real self-care feast for the senses that will give you a chance to relax and rejuvenate.

Ahhhhhhh, I remember Jamaica well! Back in 2010 took my first trip with a girlfriend after surviving a divorce, my dad's death (cancer), and losing my job due to restructuring, all within a year. It was one of the best things I've ever done for myself.

I'm mindful of the many folks on this site who are dealing with multiple medical challenges.....seems that the posts reflect a similar experience to yours (but different diagnosis). How difficult and confusing this must be. I find it hard enough to deal with PMR, chronic knee injuries, high blood pressure (well, I've reduced my meds by half), diet, exercise, rest, and well, life (as it relentlessly chugs along regardless of our circumstances). It would make sense that some of us (well, I'll speak for myself), are anxious when it comes to medical tests and appointments. In the last 10 days I found out that I tested negative for the PALB2 gene associated with tumour growth and breast cancer (my mom has it and has had breast cancer 3 times, twice in the last eight months, and my aunt - her sister, has had breast cancer as well), and my one good eye looks to be ok according to my new optometrist (hooray). Friday I found out the results of my bone density scan and get on the scale again at my gp's office. Pales in comparison to what all you brave folks are facing on a daily basis. The collective resilience of the people on this forum is astounding.....I bow to you all!!

You just never know.....all the more reason to soak up the best that life and this big world has to offer.

Wonderful words darling PMRCanada xxx

Hidden
Hidden in reply to PMRCanada

WOW! Sounds like you too have a full plate! We bow to you!!!!! Hang in there, you're doing GREAT!

So this is very "GOOD" thing, that you tested "negative," right? Like REALLY good!

So pleased MS ruled out but so sorry for the alternative diagnoses. It makes my health problems seem like nothing. Poor you, more appointments, more tests and more waiting for results. I’m often heard muttering darkly, please no more, I can’t cope with more pills, potions, tests...... You must feel the same. At least on here everyone understands. Good luck.

Hidden
Hidden in reply to Jean56

Thank Jean54, Me too... Re: MS! One more thing to be thankful for! ...but, yes, I'm so over it; no more appointments, no more tests and no more waiting for results! They offered me Gabapentin, but I said "No." I cant put any more poisons in my body! And yes, thank God for this site, because NOBODY else understands, for sure.

Thank you!

Jean56
Jean56 in reply to Hidden

I sometimes feel as though I have a chemical war going on inside of my body. My doctor wanted to reduce my thyroxine, I’ve tried it once, it doesn’t work. I told him I need a higher dose than the results indicate, it’s what works for me. Eventually he wore me down, so I reduced by 25. Within two weeks I was like a zombie. This on top of PMR and Pred was horrendous. My new, lovely female doctor listens and to me and takes into consideration what I have to say about my body, wonderful. Three years ago I took a tablet a day, thyroxine, now my repeat prescription runs to two pages.

At the moment I’m flat out on the sofa. After the weekends stomach upset, which is still lurking in the wings. Food has to be bland and in small portions. Boring and depressing. My legs really don’t want to hold me upright, I’m sure they’re full of jelly. Three years of this and it doesn’t seem to get any better. I’m having one of those down days. I think himself has realised and is taking cover. It could be I burst into tears or I could have a spectacular temper tantrum. Can you have a tantrum at the age of 62? Maybe I’m just being a bad tempered old bat and that’s probably unfair to bats! Hopefully tomorrow will be better.

PMRpro
PMRproAmbassador in reply to Jean56

"Can you have a tantrum at the age of 62? "

Of course you can. Just forget the 60...

Jean56
Jean56 in reply to PMRpro

I like it, you’ve made me smile, thank you. Don’t think I could summon up the energy for a full blown tantrum but it would be a lovely way to get rid of some of the frustration of this disease. Throw myself on the floor, kick my heels, scream and shout. Not sure how himself would handle the spectacle of his wife throwing a massive wobbler.

PMRpro
PMRproAmbassador in reply to Jean56

Careful - you might never get up again!

Jean56
Jean56 in reply to PMRpro

Oh, you’re so right!

PMRpro
PMRproAmbassador in reply to Jean56

Wasn't it you who said something about baths? I've been too scared to have one for 14 years! Thank goodness for showers ;-)

HeronNS
HeronNS in reply to PMRpro

The condo we are about to renovate and move into has two bathrooms and we are going to follow advice and turn one of them into an accessible one, might as well have all the upheaval at once rather than having to possibly redo things in five years. You never know what the future will bring.

PMRpro
PMRproAmbassador in reply to HeronNS

Exactly! I want to replace the bath with a super-shower. OH thinks it will reduce the resale value. I couldn't care! We do have a shower - but it is too small to put a chair/seat in. The other bathroom would be fantastic.

HeronNS
HeronNS in reply to PMRpro

I don't think any modern improvements to bathrooms will reduce resale value. But men are funny that way. Our balcony-to-be is currently glassed in. We have to remove the windows because we are going to get a heat pump. Hubby actually thought we should store the d*** things in case a future owner wanted to put them back up. Btw they are damaged and need repair. Let the future owner do as they will,but I don't think anyone would get rid of a heat pump and it's air conditioning capabilities just so they could have an enclosed balcony. And the same goes for a super shower. It could be selling point!

hgtv.com/design/rooms/bathr...

Jean56
Jean56 in reply to PMRpro

Don’t think so but anything is possible with my memory. I have though definitely had a bath within the last 14 years, showers are the order of the day now. This is partly through mobility and also I dislike the bath. It’s one of those that is shaped so it curves in the middle at both sides. Himself says it’s to save on water, as far as I’m concerned it’s just blooming uncomfortable. I like the idea of having a tantrum on the bed at least I could go straight to sleep.

HeronNS
HeronNS in reply to Jean56

You could lie face down on your bed and have your tantrum. then you can have a nap and recover!

Jean56
Jean56 in reply to HeronNS

I definitely like that idea. Good thinking!

Hidden
Hidden in reply to Jean56

I am so sorry you are going through this... and having one of those "down" days. I have a lot of them, lately! Yes you can definitely have a temper tantrum!!!! 62, 63, 163! We have to deal with these stupid illnesses, but we don't have to like it!!!!! I do hope you feel better tomorrow. Fingers crossed. xxx

Good God 😞 here’s wishing you well xx💕

Hidden
Hidden in reply to Lucylooloo

Thank you! xxx

Well I looked up all the Neuropathies on Wikipedia and I have to say that I also have a number of key symptoms that I have been conveniently ignoring, particularly burning feet and weak almost pins and needles leg sensations and others too. It said that it can be related to autoimmune diseases such as Vasculitis, Lyme Disease, RA, Sjögren’s. It also is treated with steroids ( all roads lead here). It is a worry. My grandma had MS. I looked in the mirror the other night and it was like looking at her, she died when I was 17. I better get checked out too. Good luck with your test results. This is not many laughs at all.

Jane darling please know I read this with sadness for you as well as for Melissa. I’m so sorry. It’s no comfort I know but I have all those symptoms and had full nerve conductor tests which showed nothing absolutely nothing. Yet the symptoms were so scary. Sometimes they just can’t find a diagnosis which is horrible. Linda xxxxx

Yes, I agree, I fall into those categories too, may point them out when I get an appointment ...when.....it is so draining all these addons Lyme disease has always been in my mind, but have been told not always a reliable test...…

I try to avoid looking in the mirror these days it upsets me in several ways....I look like my mother who died at my age I am now with cancer..... 66..and had a vey sad life overall...….but times are different now I tell myself (on a good day!)…….

It was quite nice seeing my grandma. I think my fine Pred curls, looking a bit wild added to the resemblance also kind of poorly eyes. She was a very lively interesting, interested patient to the end. She never complained just related stories about the lives of the nurses in her last hospital - verbatim conversations. I am a nosey Parker too. 🤫

I`m nosey too...it`s how we learn, well that`s my excuse anyway.....

I often wonder what my mother would think of the world today.....

PMRpro
PMRproAmbassador in reply to Longtimer

She's probably spinning wildly in her grave!!!

Longtimer
Longtimer in reply to PMRpro

Absolutely, couldn't agree more!......

Hidden
Hidden in reply to SheffieldJane

You have done your research!!!!! Good girl!

Mine has been progressive... for last 5 months; first a tingling sensation, then pins and needles, then numbness, then achy balls of feet and heels, then electrical like shocks in my feet... and then everything got exaggerated and moved up my leg!!!!!

GO GET CHECKED!!!!!

Dear Melissa

I am so sorry you are having to go through this very confusing and complicating tunnel of doubt about 'what's going on now !!' and if you decided to blow a cork from sheer frustration I wouldn't blame you. Similarly I thought (apart from a wee flare) that I was chugging through the GCA 'stations' in a regular way and that light was at the end of a tunnel somewhere - when I 'suddenly' (well by comparison quite quickly) manifested what I have been thinking are myopathic symptoms which I mentioned here recently.

From what I have read so far (I am only a 'dilettante' & no expert of course) there are myopathies associated with use of corticosteroids - especially particular varieties of them. Although I myself do not 'fit' all diagnostic criteria - it is possible the muscle weakness, some atrophy, cramps and spasms in parts of my extremities could be being caused by being on a high cumulative dose for some time. I realise your symptoms are not all the same as mine but I am unsure why you think - or your doctors ? = that there is no possible association at all with corticosteroid use - there is quite a lot of info about this around. But as I say I am certainly no expert in these matters and have yet to get definitive answers myself about the problems I am having. i have just had numerous bloods taken and hope to see some results later today - which may or may not shed some light.

It is however GREAT news for you that this is NOT MS - as obviously very much 'better' to have something which may dissipate and even resolve completely even if only 'one day' ...

In the meantime Melissa I understand your attraction to any and everything - wherever and however - that might make you feel just a wee bit better ... and yes where is HOUSE when we 'need' him !!!??

Lots of Love

Rimmy

XXXX

Hidden
Hidden in reply to Rimmy

Hi Rimmy, thank you! ...and YES, I hear ya! I'm no expert either, but from what I gather (and I could be missing a lot!!!!) there are some myopathies associated with use of corticosteroids, but not with neuropathy.

Great Power point >>>>> slideshare.net/dineshthanga....

Neuropathies - Damage to NERVES which may be caused either by diseases or trauma to the nerve or as a component of systemic illness.

Myopathies - Neuromuscular disorders in which the primary symptom is MUSCLE weakness due to dysfunction of muscle fiber.

Oh Doctor House..... I sooooo need you!

Rimmy
Rimmy in reply to Hidden

Oh goodness - my brain is not working well at present - of course NEURopathy is quite different - but guess neither of us want either of THEM - sorry to be so confused/ing - i blame it on the lack of sleep and pain - and just perhaps some general 'stupidity' !!

XX

Hidden
Hidden in reply to Rimmy

NO WORRIES!!!! I'm lucky I know my name!!!! xxxxxx

it was a good power point though... very informative about both!

Jeezaloo, kiddo, you can't catch a break, can you. I'm so sorry to hear this news.

I can surely understand wanting to get away, but Jamaica in the hurricane season may not be the best idea.

Maybe the Mediterranean?

Hidden
Hidden in reply to GOOD_GRIEF

JEEZALOO indeed! Hahahahahahahaha. Nuh worries mon... I would go after November!

Need mi som raggae....

xxx

GOOD_GRIEF
GOOD_GRIEF in reply to Hidden

Reggea and rum...sounds great...

Hidden
Hidden

Morning Melisa

Funnily enough before I was diagnosed (PMR) l used to say ‘Where’s Dr House, when l need him?’

The old Neurology Appointments are pretty lengthy but very thorough, l am so glad it’s not MS though l think a few of us suspect we ‘have’ it before they say PMR!...

I hope they can find out exactly what it is, Neurologists like a challenge, so l’m sure they’ll get to the bottom of it for you.

I have the old Peripheral Neuropathy curtesy of Chemo!

Keep hanging in there, you can do it!.....

Love Angela xx

Hidden
Hidden in reply to Hidden

Hi MrsNails, Yes, she asked me twice if I had ever had any Chemo meds for any reason, so I suspected they are a contributing culprit!!! ...but thank god I have not! They will get to the bottom of it... let's just hope my autonomic nervous system (which regulates involuntary body functions such as heartbeat, blood flow, breathing, and digestion) doesn't break down in the meantime! : O

Hidden
Hidden

Morning Melisa

Funnily enough before I was diagnosed (PMR) l used to say ‘Where’s Dr House, when l need him?’

The old Neurology Appointments are pretty lengthy but very thorough, l am so glad it’s not MS though l think a few of us suspect we ‘have’ it before they say PMR!...

I hope they can find out exactly what it is, Neurologists like a challenge, so l’m sure they’ll get to the bottom of it for you.

I have the old Peripheral Neuropathy courtesy of Chemo!

Keep hanging in there, you can do it!.....

Love Angela xx

I think I know what you are going through, as I have had my own battle with excruciating neuropathy and the frustrations of not getting a useful diagnosis. I had to tell the 4th neurologist in as many years that my Sjögrens could be a cause. Doctors like to say that 60% of cases are idiopathic--of no known cause. Good that you don't have MS. Have you tried gabapentin or pregablin for the symptoms? Though not without side effects, they can give some relief. Good luck getting to some peace of mind.

Hidden
Hidden in reply to Joaclp

HA! Funny, I have now (after visit to Neurologist) self diagnosed Sjögrens!!!!! : )

She offered me Gabapentin, but I said no... I just can't justify any more poisons right now... So Joaclo, why do they NOT think your neuropathy is associated with your Sjögrens????

Thank you!!!

The Voice of the Patient

A series of reports from the U.S. Food and Drug Administration’s (FDA’s)

Patient-Focused Drug Development Initiative

Neuropathic Pain Associated with Peripheral Neuropathy

Public Meeting: June 10, 2016

Report Date: February 2 2017

fda.gov/downloads/ForIndust...

.

Not sure if I copied this link correctly but the pdf is a document of meetings held by the FDA that is a very telling expression of the sufferings and frustrations of those with neuropathy. My husband found it. At the very least, it introduces a community of sufferers. Sorry if I'm a bit of a fanatic on this subject.

Angiejnz
Angiejnz in reply to Joaclp

Brilliant link, really interesting

Hidden
Hidden in reply to Joaclp

VERY COOL!!!!! Thank you very much!!!! xxxx

So sorry you have more problems to deal with, but chin up you CAN DO this. Lots of virtual hugs and sympathy 💐

Hidden
Hidden in reply to CT-5012

Awe... thanks! I felt them!

Omg - what more can I say. Nothing about health is clear unless it’s very simple illnesses. All the best and keep in touch

Hidden
Hidden in reply to Janicep

Thank you. Yes... maybe, clear as mud!

I wish you luck, please keep us posted....thinking of you...

Hidden
Hidden in reply to Longtimer

Thank you Longtimer, I will. How are YOU doing???????

Longtimer
Longtimer in reply to Hidden

Well, yesterday was able to go to my son`s with husband driving, caught up with the teenagers.....they move around so fast!!...not used to it.....I`m a little stronger each day, and not so dizzy and balance is easier....so I`m thinking now at 9mg is this what is going to happen every .5mg drop?...I do it very slowly over 2 months.....

Still don`t have hospital appointment......secretary said probably by end of August....and so it goes on.....like you though and I suppose most people when feeling really ill, all sorts of things go through our minds......I am a good one telling my sister off for doing it (she lives alone with RA)….but still do it myself!...human nature whatever that is......anyway, hope you get answers soon....too stressful waiting!....

Keep ranting it all helps!!….and I love those pictures! xx

Hidden
Hidden in reply to Longtimer

Well happy to hear you are feeling a little better! Are you using the Dead Slow Nearly Stopped method? I will keep Ranting... I have no choice, really! xxx

Longtimer
Longtimer in reply to Hidden

Yes, I think it's the dead slow...very slow....Mon one week. Mon/Fri next week....leave it for 2/3 weeks....if reasonably ok.......Mon/Wed/Fri.......2or 3 weeks again.....may add another day.....and repeat only if ok.......no drop is ever the same....envy those that drop easily.. ..I dread doing it now in case of going backwards, but won't attempt it till I have been to Endocrinology........what mg are you at now?

Hidden
Hidden in reply to Longtimer

It is a riddle, wrapped in a mystery, inside an enigma!

Longtimer
Longtimer in reply to Hidden

Certainly is...sorry for that longwinded reply about lowering, bet you wish you had never asked!

Hidden
Hidden in reply to Longtimer

SILLY! It wasn't longwinded at all!!! And NO I am not sorry I asked! : )

Longtimer
Longtimer in reply to Hidden

Ps, meant also to say at one point my toes looked bluish and were tingling, then that stopped....why I don`t know...this is what I think can be the hardest to manage, all these different things that PMR (if it is that) can throw up...and no two days the same...or two hours!....yes, you are right....a bloody enigma!

Hidden
Hidden in reply to Longtimer

It is NEVER simple and straight forward, that's for sure! Symptoms come and go.... new ones pop up! It's CRAP! ...but we persevere! xxx

Longtimer
Longtimer in reply to Hidden

This screen is weird today, nowhere under your posts to "like" and some Chinese pictures!! I give up!.....

Telian
Telian in reply to Longtimer

Apologies for butting in Longtimer but I haven't really spoken to anyone who has the same tapering problems I have. I reduce at the same pace as you - maybe slower, the first drop is the worst, I do once weekly for at least a month then 'dip the toe in the water' with a two day drop for the same length of time and so on...it takes a long time but it is in the right direction after all. I have been as low as 3mg but went up to 5mg in April and only just settled back on 4.5mg. Tried the first .5mg drop last Sunday and still suffering the head/neck/jaw ache so it will be a few weeks before the next. I wait until all symptoms have subsided and even then I get nervous about the next drop - it's when you know what's coming! ATB

Longtimer
Longtimer in reply to Telian

Don't apologise!....we are all in this together.......I react to all medication....with extra pain can only take half paracetamol in the daytime....think this is probably our problem with lowering as well. How long have you been on pred?

Telian
Telian in reply to Longtimer

Since March 2014, started on 50mg for GCA, then PMR arrived, then cancer arrived 5 months in and that took a toll in enabling reductions. After all that managed to get to 3mg in 3 years, with awful withdrawals each and every time, and is why the long journey. I'm not spaced out about it just accept, particularly with what's gone on and what is currently happening with me. Pleased you agree re my favourite chef!! ::) ::) Lovely to chat.

Longtimer
Longtimer in reply to Telian

Goodness, it never rains but it pours….but I think you have done really well with all that you have had going on....pred being the drug it is could not have been easy with the other treatments....

I was told nearly 7 years ago (got PMR for my 60th birthday) to lower in two years....felt terrible doing it and relapsed badly when nearly off it....the old saying wish I knew then what I know now......well you can guess. I refused to see that rheumy again who frequently used to say to me (and other patients) don`t speak, I am here to tell you!....so asked for second opinion.....in same department...think they must have all been trained at same medical and charm school!....so with his agreement now lower how it suits me...…...but have new symptoms so waiting for appointment for Endocrinology. Sadly I don`t hold out getting answers or help....it`s a shame to have to feel like that...but hey ho, we`ll see...…

Think I need a certain chef to cook for me!....mind you watching him lately in USA, he looks like he`s on pred, but he does like his food!....and why not...

Telian
Telian in reply to Longtimer

Oh dear what a loverly man your Rheumie!! NOT - and yes hindsight is a wonderful thing.

He can cook for me any day, my hubby knows he takes second place.... Re his weight, when we go to see him he tells the same story - people say to me 'ooh you don't look as fat as you do on the telly' he just rolls his eyes, I think he's great and no he doesn't look as fat in person. Did you see the last episode of his Saturday programme? he looked as if he'd lost weight to me - that's coming back eventually after he's moved house I would say. Takes the mind off our day to day drudgery it does...

Longtimer
Longtimer in reply to Telian

Yes, couldn`t agree more....

Longtimer
Longtimer in reply to Telian

Just read your other posts......have to agree with favourite chef!!👍

Hi Melissa. As the others have said, just really sorry you’re going through this as well. Thinking of you, kind regards Mike.

Hidden
Hidden in reply to Mike1964

Thanks Mike1964, I really appreciate know you are all out there and rooting for me!

Oh very best wishes - hope you get a diagnosis asap!!! x The waiting does NOT help!!

Hidden
Hidden in reply to powerwalk

Thank you ! xxx

Thinking of you Melissa x

Hidden
Hidden in reply to York54

Thank you ! xxx

Oh twinny, I am so delighted it's not MS, hideous disease. Sad to hear you have another layer of pain, it's those flipping onion analogies coming back to haunt us. No wonder onions make us cry. Jamaica sounds great, the rum is good. We had a party when I worked at an international cricket ground in London, when the players got back from the West Indies. We were given a really delicious rum punch drink at the door and people happily got through the tall glass. All of a sudden everyone, nearly simultaneously, sat down or fell down.....after one drink???? Found out it was 150% proof rum with not a lot of coke in it. Short party as it then sent most people to sleep. Moral of the story... see you in Jamaica 🤣 Kia kaha

Hidden
Hidden in reply to Angiejnz

Thank you Sister from another Mother! Hahahahahahaha, wish I were there! Sounds like a PARTY!

Yeah... onions. Whaddaya gonna do, right? xxxx

Sooooo glad it’s not MS. Sorry it’s probably something else, even if it’s not fully diagnosed as yet. Just one more (health) stick to be beaten with, eh? Try not to get too angry about it, even if it’s justified. I’ve found to my cost it doesn’t help and just drains the already depleted energy that we have. In a week or two you’ll be able to deal with it more rationally. Jamaica sounds rational, though.... x

NB 9 vials of blood would have given me the most enormous bruising! Ouch!

Hidden
Hidden

Thanks peace_lover! I am shocked I have NO BRUISE!!!! The phlebotomist said she was using the largest needle, becausue if she didn't we'd be there all day... I expected to have a black and blue arm! But I have a tiny, little pin prick mark! Amazing!

Thanks, I will try to keep my RANTS and anger in check... but I make NO promises. ; )

xxx

hi, Melissa

Yeah, the onion thing.

i always try to be positive and think “Oh, it’s only PMR—and not stage 4 of some kind of cancer (or MS)”. but then i’ll wake up in the middle of the night wondering why me.

so many of this group have so many horrific illnesses to contend with. while there’s nothing we can do to help, i’m sure we’re all in total support of each other. that is so comforting.

i love that we have the aunties and each other.

group hug!!

Hidden
Hidden

Thank you MartiFL, yes, I am not the anomaly!!! there are so many suffering from multiple illnesses... and you are RIGHT, we have each other! Thank goodness!

Well nuts Melissa! It does seem to be 2 steps forward and 1 step back. (Or sideways) Wishing you well today. You have the tenacity to overcome whatever happens in life ❤️

Hidden
Hidden in reply to bunnymom

Thank you Bunnymom! Fingers crossed I get through this!!!!!

I’m right with you on the neuropathy, except mine has been coming on for over 2 years and before I took any prednisone. Are they sure yours isn’t a side effect of prednisone? Maybe there’s hope it will recede as you reduce the dose?? I have a follow up appointment today with my primary doc. I think I’ll be referred for more tests. Will let you know...glad it’s not MS and wishing you luck!

Hidden
Hidden in reply to Ciar

Nope.... absolutely (based on the opinion of GP, Rheumy and Neurologist) nothing to do with PMR, GCA or steroids!!! I also cant find definitive connection on Google...

Yes, let me know please how YOU make out!!! Good luck!

Ciar
Ciar in reply to Hidden

Yesterday I made an appointment with a neurologist/physiatrist in Portland OR on Sept 11. It’s a long drive but we have lots of family there. Hopefully some answers will be coming (though it could be idiopathic neuropathy which actually is a non-answer).

Hidden
Hidden in reply to Ciar

Good luck with that appointment! I'll be interested in hearing if US doctors also say no "connection," between GCA, PMR, steroids and Neuropathy! ...but I have heard many people on this site say, once you have one AI disease, you are prone (for lack of a better word) to others. (?) Best of luck to you!

Hi Melissa

Just catching up after a few off days.

I'm sorry to be reading all you say and find it unbelievable (again) that no one has any inclination, not even a teeny weeny bit, of what it might be but it's never straight forward as we get to know. How are you feeling now? Good news it's not MS though, not the case with me I'm afraid but that's another story. I'm feeling rather deflated today so not my usual joyous self - sorry.

Are you really going to Jamaica on your own??!! I'm presuming it's something you do from time to time... It will be amazing in helping you chill out though. Only two weeks to our meeting up, I do hope we do, I was chatting with my sister last night and said what the plan is and I'd like to make it for a coffee before hand where you suggested. If for any reason that fails perhaps we can PM contact details nearer the time? Otherwise we could go the whole day not meeting up and that would be awful, I think.

Anyhow I hope you get to know something soon re your current/latest troubles, will be rooting for you as always. Terri xx

Hidden
Hidden

Awe... thanks Telian! I'm sorry to hear you are feeling "deflated?" What's up with you? Something specific or just a "bad day?" I get them all the time... : )

Yes, my Hubby has no interest in islands or beach holidays... so I'd go alone! I used to travel alone as a young woman, so why the hell not now??? I'll start looking after hurricane season... I love Jamaica and reggae soon... we'll see.

Yes our meet up!!!! I will post something soon about meeting for coffee at that place I mentioned... it seems a good location and close to the venue. xxxx

It's been one of those weeks, it started on Sunday when I reduced by .5mg for the first time in 4 months. Felt terrible all day with severe neck, head and jaw pain. Felt much easier the following day then started again the next day, couldn't understand why but found out later in the day that one of my preds had stuck to the side of my pill bowl and so was taking 1mg less than normal - the body knows every time doesn't it - it's certainly not psychological. Then 24 hours of sorting sons car out - another story, he's very unwell too. Then my sister rang to tell me the results of her cardiology appt - don't know if you recall but she collapsed in the street 6 weeks ago and this has been going on since trying to find out what's wrong. It appears she had a heart attack!! and is suffering badly with angina. She was not taken to hospital on the day as it was a 2 hour time scale for the ambulance so she went home - no pains anything just jelly legs. Then I got information from the hospital yesterday that I have to read in readiness for my appt 7th September with my MS Consultant. It's to do with registering with the MS society and clinical trials etc etc and I presume discuss whether she's going to prescribe medication, I really hope not - basically it's hitting home something that I've been pushing to the back of my mind since the positive MS results. I'm not on DMD (disease modifying drugs) at the moment due to already having an AI...therefore monitoring me as I seem 'too well'. I will have to tell her I'm getting new symptoms now so suppose It's everything really, I'm not taking it very well but will bounce back. I blame the pred it makes us unable to cope at times when we would normally. As Arnie says 'I'll be back' xxx

Pepperdoggie
Pepperdoggie in reply to Telian

So sorry to hear of your further troubles Telian. You deserve so much better health & fortune. One of the understanding stars of the forum you are. Hoping that things improve for you. Hang in there.

Telian
Telian in reply to Pepperdoggie

Oh Pep that is so kind of you, never think of myself that way as it just comes naturally - suppose it's being the eldest of seven! Even though I have wonderful family it's so therapeutic to come to this genuinely caring community. I hope you are okay, these things like to come to try us....

Hidden
Hidden in reply to Telian

Wow! You do have a lot going on.... I'm so sorry. I hope your sister is okay! I somehow missed that you have been diagnosed with MS! I had no idea... but then again I forget about half of what I know anyway. : ( So maybe I did know. Yes.... sometimes we are just overwhelmed with "it" all. I'm not taking this neuropathy very well.... if it was related to the GCA, PMR, steroids, fair enough... but to find it is NOT, and that it is a whole new illness to deal with, is disheartening at best. Anyway, you hang in there.

As Annie says, "The sun will come out... tomorrow! ...bet your bottom dollar that tomorrow... there'll be sun!!!!!" xxx

Telian
Telian in reply to Hidden

Don't you worry Melissa, you have enough going on too. Try to relax, I hope your symptoms are not too bad to allow that, until you know what's going on. I've known my diagnosis but erred on the good side for 18 months purely because I put my faith in my brilliant Neurologist, very thorough, understands all that's going on with my other illnesses and felt it the right decision not to start me on DMDs until such time she thinks necessary. I have seen a letter re my latest brain scan but there was more medical jargon so I did ask my GP - he says it means your stable but you do have it, that's the first time it hit home and then further info came this week ready for my appointment. So hey ho and it is what it is etc - I'm always a glass half full person and yes the sun will come out tomorrow and if it doesn't I'll look forward to when it does! xxxx

Hidden
Hidden in reply to Telian

Good on you! I applaud your spirit! ...and optimism! Some days I have it ( a half full glass) and others days I don't. ... but it's all good. xxx

Telian
Telian in reply to Hidden

.....and good on you too! Hope that glass of yours has plenty of water with the spirit! xxxx

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