Is no news, good news?

So… yesterday was “D Day.” My long awaited appointment with the “Big Dawg,” the Consultant Neurologist!!

I had seen the neurology registrar, back on August 22, and she had ordered a battery of tests. Yesterday’s appointment was the follow-up, to go over the test results, that had hopefully determined what’s causing my neuropathy.

He was warm, welcoming and very thorough. He asked many of the same questions the registrar had asked, back in August, and performed many of the same tests; the old pinprick in the feet and legs, the tuning fork exam, the “hit you with a hammer” reflex test, “touch my finger touch your nose,” etc, etc, etc.

He had a strong constitution, I’ll give him that! He didn’t even flinch when I rolled up my jeans to reveal my bloody, bruised legs; although I may have seen him gag ever so slightly, but I can’t be 100% sure, because the cataracts prevent me from seeing anything clearly!!!!!

Unfortunately (or fortunately, depending on how you look at it) the test results were, in the Consultants’ words, “unremarkable.” (Hmmm? I’ve been called a LOT of things in my life, but unremarkable was never one them!) There was nothing out of the ordinary, although the genetic test results were still not back, so the jury's still out on whether my parents are to blame or not!

Bottom line… he has no idea what’s causing my neuropathy, but he is not rolling over just yet! He ordered a bunch of different blood tests, a CAT scan of my chest, abdomen and pelvic area and will put in a referral to the gastro team, because the “problem” that reared its ugly head in France, is still with me! *ahem* Enough said on that delicate subject!

He did say that in about 30% of cases where a patient suffers from neuropathy, they NEVER find the cause! (WTF? That’s a very high percentage!!!!) In those cases, they treat the symptoms, as best they can, and try to alleviate the uncomfortableness, but they don't ever find the actual cause.

However, he said if this next round of tests come up empty, he will refer me to a guy in London, who is a neurologist as well, but specialises in nerve and nerve damage.

So, I guess... no news was kind of good news, but the chase continues…

Watch this space.

[Hidden]

Blimey Kiddo it seems another blindfold "dartboard game" of analysis!

Hang in there with this game of "Pass the Parcel"! 30%!!!!!!!

[Hidden in reply to Hidden]

🤣 "Blindfold dartboard game!" You crack me up PD!

[Hidden in reply to Hidden]

Hope so M! Have an appointment myself tomorrow! The tension is rising! Off to feed the ducks for the Karma!!

[Hidden in reply to Hidden]

Ooooo, good luck. I hope you are not deemed "unremarkable!"

[Longtimer in reply to Hidden]

My mother-in-law many years ago went into blind panic when a doctor told her "unremarkable", we had to explain it was better than remarkable....she was better the next week after that, and lived 25 more years!...…

At least he hasn`t given up, and will refer you on if need be..... You`ll get there,......Good luck.....

[Hidden in reply to Longtimer]

Thank LT, Yup, definitely! It really seems like he would like to get to the bottom of it, which is good.

[Hidden in reply to Hidden]

Thanks. Low profile me M! " Unremarkable" would suit me! The other half of the brain still keeps putting that foot in the tackle though!

[Hidden in reply to Hidden]

Ohhhh PD!!! I never have a clue what you're talking about, but I always smile and usually laugh out loud.... so keep it up! "....foot in the tackle?' Hahahahahahahahaha

[Blearyeyed in reply to Hidden]

Good luck PD

[Primarose]

Hi mamici1, well I suppose in one way he was being honest with you but you're no further forward really are you. Not yet anyway.

Is the glass half empty or half full?

I think that the fact that he said he could refer you to the guy in London, (expert) might be a good omen.

More tests and examinations, you must be a *tiny* bit fed right up with it all.

[Hidden in reply to Primarose]

Cheers Primrose! I can't really see the glass... but, I have a good gut feel about him, which is a good sign. Yes, getting a teeny, tiny bit weary...

[Primarose in reply to Hidden]

You could try putting some wine into the glass, red of course!

[Pipalina in reply to Hidden]

You'll see the glass with your lovely new specs!!! At least he is sticking with you and is prepared to refer you on if needed. All the best to you, as always - Kathy xxx

[Rugger]

It sounds good that he was warm and thorough, as well as honest in his discussion with you about finding the cause. Also, he has referred you to the gastro team and won't be afraid to refer you to the London neurologist if need be.

I don't think you can ask for more than that - other than wishing you didn't need him at all!

Hope the next lot of tests go well.

Take care x.

[Hidden in reply to Rugger]

Hi Rugger, Thank you! Nope, can't ask for more! I was pleased with his action plan, just a wee bit disappointed we don't have any answers. Ahhh, well..

[Blearyeyed]

Hi Sweetie,

Glad to hear from you I was worrying.

So one more step up the diagnosis ladder then?

The prize at the top hidden in clouds and the rungs sticky with bureaucratic tape.

Only upsides are they are still looking , more tests done and will likely send you to someone who actually knows what they're talking about.

Trouble is as your eyes get more bleary you can't hit them as easily with a brick!

Do you know which blood tests he requested ? it might give you some idea of how his brain is working, especially if you have the GI stuff as well

( join the team my friend, we are a happy bunch , although there is always a queue to use the toilet) .

I know you are amazing at keeping you chin up so please don't let it get you down. We are here for you.

[Hidden in reply to Blearyeyed]

Awe.... thank you!!!! That's sweet. Hahahahahaha, "...can't see them to hit them," I love it! His writing was atrocious, I tried to read blood work order, but could not... saw something about "Glucose" and something "rheumatoid?" "TTN," maybe? Thank you again, Blearyeyed! xxx

[Blearyeyed in reply to Hidden]

Yes we all complain about doctors penmanship ( or lack of it !) even without the added disadvantage of growing Bleary-eyes!!

My opinion is it isn't some genetic mishap that those who have medical talent also seem to be bad at writing skills, I think they train in writing like an apoplectic spider so you can read what they say about you or what they don't bother to write down.

Plus , I have just read your new post ( who is that devastatingly attractive woman in fancy glasses in the photo by the way 😁😁) .

Just wanted to ask if you are sure your eyes are improving or have you got better weather than me , as I am pretty sure it's blooming heaving it down in chunks here!!

Hugs and celebratory balloons

BE xxx

[Hidden in reply to Blearyeyed]

Wow!!! Thank you!!!! "... devastatingly attractive," I'll take it! Wow! It must be the NEW GLASSES!!!! The sun came out here.. I swear it did, for about 30 minutes... then dark and cloudy again! Oh well... xxx

[Blearyeyed in reply to Hidden]

That wasn't the sun , it was just the blare of light with your funky new glasses and working lenses!!

[SheffieldJane]

Oh! Well he gets points for being thorough, I suppose. Any chance of this going as mysteriously as it came?

I’ve got about 17 queer symptoms queued up to do just that, hoping. Xxx

[Hidden in reply to SheffieldJane]

Ahhhh, from your mouth to God's ears! That would be fantastic to wake up and have this gone!!!!! xxxx

[CT-5012]

Started to write a post ages ago but then realised that my arm had sprung a leak and the red stuff on the chair arm was mine, all gone now. Chin up, at least you have a neurologist who is honest enough to admit that he doesn’t know everything. Sorry that the gut problem is still with you, mine is not too bad at the moment as I am taking amitriptyline at night for the sciatic pain as my gp said every cloud has a silver lining. If I didn’t have so many b***# clouds I wouldn’t need any lining. Do let us know what the ge people pull out of the lucky (?) dip for you. All good wishes and lots of hugs and sympathy .

[Hidden in reply to CT-5012]

Oh my!!!! Blood???? Bummer. What did you do???

When he was poking me for the "pin prick," test yesterday he got a little overzealous.... I guess he figured since I couldn't feel it, he could prick me harder!!! I had blood all over my foot and leg when I got home, and today I have tiny little pin pricks! 😳It looks like I've been "self harming." Thank you and hugs right back at ya! No more springing leaks!!!!

[Blearyeyed in reply to CT-5012]

What the heck matey !!

Are you alright , what is occurring?

[Rimmy]

Dear Melissa - all very discombobulating - but you will now be looking to the future when something possibly 'helpful' may emerge with further tests - and he did at least sound like he was trying to get to the bottom of things. Also Melissa it is not 'YOU' who they called 'unremarkable' - which we would ALL most certainly dispute - but only your current test results !!

Like others here we have been concerned about you - so thanks for keeping us up to date - just sorry you still (for now anyway) don't have the 'answers' - especially the ones you might be wishing for !

Love

D & R

XX

[PMRpro Ambassador in reply to Rimmy]

Just trying to envisage a dicombobulated Melissa...

[Hidden in reply to PMRpro]

I'm trying to envisage me, NOT discombobulated!

[Hidden in reply to Rimmy]

Ahhhhh, thanks D&R! Yeah, I took a little poetic license with the 'unremarkable' comment.... 😉 but appreciate you jumping all over that! You know me... get the quick giggle when you can, with a little self-deprecation! Thank you and yes, the answers (we really want) do seem to evade all of us don't they? xxxx

[Rimmy in reply to Hidden]

And yes I was taking some of that 'license' myself as an excuse to state that you really ARE a 'remarkable' woman - able to articulate so many things we all share some aspects of at least and 'answers' - where are they ?

XX

[Blearyeyed in reply to Rimmy]

Mind is boggling ?

Pretty sure you don't want to discombobulate Melissa, especially not as it's only Tuesday and I am pretty sure that more of a Friday thing!

Please get some ointment for that. xx

[bunnymom]

At least leeches weren't recommended!

[Hidden in reply to bunnymom]

True, bunnymom. Good point! I should count my blessings!

[Hidden in reply to bunnymom]

Coming back in fashion soon I fear!!!!

[PMRpro Ambassador in reply to Hidden]

Already being used...

[Hidden in reply to PMRpro]

😱

[Blearyeyed in reply to Hidden]

We have one of those medicinal leech farms near to use if you want me to scrump you a few.

Just let me know. xxx

[Hidden in reply to Blearyeyed]

😳 Ummmm, no.

[Hidden in reply to PMRpro]

Ah! That's after the blood letting! ....Nothing like medical progress is there..!

[bunnymom in reply to Hidden]

I hope not for PMR. But wait maybe I could be persuaded if there were no side effects!

[Hidden in reply to bunnymom]

I have this visual image of two leeches, stuck on either side of my head sucking blood out of my temples!!!!! YIKES! 😱

[bunnymom in reply to Hidden]

That is quite a picture and who takes them off? Yuck. Maybe Pepperdoggie could fish with them?

[Hidden in reply to bunnymom]

NOT ME!!!!! ...because I sure and hell would not have put them on!!!! Yes, PD, can take them off!!!

[PMRpro Ambassador in reply to bunnymom]

They give up and fall off when full...

[Constance13 in reply to PMRpro]

😂😂😂

[Hidden in reply to PMRpro]

Cheer. I could have lived a long and happy life, NOT knowing that!

Leeches get so stuffed with blood... they give up and fall off! Nice! 🤢

[PMRpro Ambassador in reply to Hidden]

Just as well really...

[Blearyeyed in reply to Hidden]

I guess you won't want to hear about the sterile maggots for a open wound .

They do get picked off but sometimes one becomes and adult and a fly lifts off.

Apparently , they are really good!!

Sorry to adding to the foul images you have of bugs eating you.

Bet there is a post in it !!

[PMRpro Ambassador in reply to Blearyeyed]

Now I had considered mentioning that - but decided it was a bit OTT for most others before lunch...

[Blearyeyed in reply to PMRpro]

Yep, it's just past 2.30 pm here now so , hopefully , safely past lunchtime , hope the people over the pond or OZ way are not eating dinner or breakfast when they read it though.

Sorry all , hope some find it fascinating instead of just ucky!!

[Hidden in reply to Blearyeyed]

🤢

[Hidden in reply to bunnymom]

Just a slow continual loss of blood! Hardly noticeable really except for a growing expanding thingy taking over your body as you finally get some sleep!

[Hidden in reply to Hidden]

Yuck.

[Footfairy-1]

I don't think anyone could call you unremarkable. You are definitely remarkable! Just the test results with that name!

It's moving in the right direction: At least the results weren't bad. The doctor was thorough. More tests (arghhhh🤷🏻‍♀️) to try and get to the bottom (ha) of things. Referral to the gastro team. Maybe a referral to the guy who knows everything in London.

You have things to look forward to! 🤓 Even if the looking is a bit misty at the moment.

We're right with you x

Onward and upward. 😊

[Hidden in reply to Footfairy-1]

Awe... thank you, FF-1!!!! Yes, it is moving in the right direction!!! ...I need to remember that. I just got a wee bit bummed as he did not have any definitive answers. ...but he will, he will!

[Hidden]

Thanks, Footfairy-1! Kind of you to say. ...and yes I am lucky he has a comprehensive action plan and is not afraid to refer me... also he seems to have his ego very much in check. Which I liked! Thanks you ! xx

[Blearyeyed in reply to Hidden]

I am getting a bit hacked off with doctors requiring remarkable test results.

Surely this is very superficial and prejudiced.

It must be very upsetting for the abnormal and unpleasant results to keep being shoved to the back of the shelf because the docs are only willing to give acknowledgement to the high flying pupils in the test scores.

They'll bring in one of those league tables next.

Then your symptoms will be put under special measures if they don't perform well enough.

Ahh life on the road to diagnosis, you've got to laugh or you would run someone over !!

( Probably a white coated torturer!!)

[PMRpro Ambassador in reply to Blearyeyed]

All it means is that the results did not show any abnormalities that required further comment. What do you want them to do? Go through every result and list them saying "Normal", "Normal" "within normal range"? - which could take half an hour instead of "Unremarkable" taking a few seconds?

[Blearyeyed in reply to PMRpro]

No , I was only joking

Hope you had a good day PMRpro.

[Hidden]

‘Unremarkable’ eh?....... l’m usually ‘Atypical’ 😉

So, stumped them again kid? Just occasionally wouldn’t it be nice to have results that showed exactly what ‘It’ was & a quick & effective treatment?

Too much to ask, somehow me thinks!

Oh well a trip into London might be fun & you never know he may have an answer for you! 🤞🏻 🙏🏼💕

Angela xx

[Hidden]

Hahahahaha "Atypical," nice! Yup I stumped them again 👏🏻👏🏻. Maybe, that's an idea... I could make a game out it! See if I can come up with more illnesses that doctors can't figure out and then give myself points, and the points equate ££££, and I take myself shopping?

Nah, crap idea.

[Blearyeyed in reply to Hidden]

When you work out the rules of the game I know a few people who would like to play it.

Gosh, it could end up as this Christmases best seller!!!

[Hidden in reply to Blearyeyed]

The PMR/GCA, Autoimmune community could give those doctors a run for their money!

[Harbel in reply to Hidden]

Maybe not a game- a deal. You pay them for a diagnosis and they pay you for a non-diagnosis!

[Hidden in reply to Harbel]

Ooooooo, I like it!

[AndrewT]

Dear mamici1,

I don't know you, or anything about you, other than this 'Post' but, tell me honestly....Do you ever get really, Really, REALLY P-ssed Off, with all of this? Are you, on the other hand, relieved/ glad that 'Someone' is (finally) trying to Help you? It's a strange Combination, of feelings, isn't it? My Hope/ Prayer and, I'm sure that 'Everyone WILL Echo This', is that you are, one of, the people that CAN be diagnosed- and thereby helped.

Wishing you well mamici1

AndrewT

[Hidden]

Great questions, AndrewT! And thank you!!! My emotions are usually fleeting. I used to say, "Damn, I can't even sustain a decent depression," and I'd laugh. I do get down in the dumps sometimes, but not so much pissed off.... and, YES, I am very happy that this guy, the neurologist, seems to want to figure out this neuropathy thing: and for that, I am most grateful... What does get to me, is that since November 2017, it just hasn't stopped. It has been ONE THING after another. On November 12th, I was a (young) 63 year old, strong, independent, social, vibrant, working woman. I had friends, a social life, I volunteered at the local hospice as an end of life companion and was on their Chaplaincy Team. I worked at the local hospital part time and my life was rich and full... on November 13, I got a horrible headache and my life has been forever changed. It frustrates me that I now have a GP, a Neurologist, a Rheumatologist, an Orthopaedic Surgeon, and soon a a Gastroenterologist! And that I am pretty much a recluse, dependent on my husband for most everything, can't walk, cant be too far from a toilet, and can't feel my feet! Not to mention my social life is down the tubes... who the hell would want to hang out with me???? I'm a miserly! Thank you for your well wishes and I apologise for being such a whiner.... I know there are many people, out there, dealing with much, much worse than I am! Many thanks and be well, Cheers, M xxx

[Blearyeyed in reply to Hidden]

Stretcher me over, I would hang out with you baby anytime!!

Gentle hugs Be xxx

[Hidden in reply to Blearyeyed]

awe... thanks!

[Jackoh]

Could never coin the phrase " unremarkable" to describe anything about you Melissa!! Good that he seemed a good chap, was honest and open to referring you if needs be. Doesn't answer any of your questions but at least it's being investigated thoroughly.

[Hidden in reply to Jackoh]

Why thank you Jackoh! What a lovely thing to say... Yes, I liked him. I'll see him again in 3 months...

[Suet3942]

In the midst of all the madness you do make me laugh Melissa!! Hope SOMEONE can shed some light on the cause of your leg/feet problems. Just had a mental picture of him “gagging slightly” 😂😂

[PMRpro Ambassador in reply to Suet3942]

Melissa: Meant to say at the time but I can't find it now. I seriously doubt that your legs are gagworthy compared with some he will have seen! In fact, he probably felt they were shapely and relatively attractive appendages. If nothing else, I imagine your toes didn't fall off in your sock? Happened to a colleague of mine in the vascular lab. Or required to be wrapped in a plastic bag sealed to your leg with ducttape to contain the whiff? OH had that joy.

[Hidden in reply to PMRpro]

😱 Ummm, NOPE, my toe did not fall out in my sock... THANK GOODNESS! Thank you I feel much better counting all my intact toes!

[Hidden in reply to Suet3942]

Thank you Sueet3942. Sorry I have been visiting Mad Max in Manchester! I just saw your post. *laughing* sorry about the gagging! ...but always happy to make you laugh!!!!!

[Linny3]

Hi I have recently been suffering with nerve pain in my feet and one leg. It came on fairly suddenly about 2 weeks ago . I was wondering if you could tell me a bit more about yours. I am on rayos and it started after that. I didn't have it when i was on the plain prednisone. Also, started plaquenil and evista. All the nerve pain started after these three. I stopped the plaquenil and evista trying to see if that could be the problem. But, I can't stop the rayos. It has been one week and i see no difference. Today I saw a foot specialist and they want me to do a nerve test. They have no suggestions as to what could be causing it. I do not have diabetes. Just wondering if we have anything other than pmr in common?

Thanks

[Hidden in reply to Linny3]

Hi, So sorry I was away at my daughter's in Manchester, for several days... My neuropathy came on slowing (over a few months) but it progressed to what I have today; numbness (up into my mid-calves,) pins and needles, electrical shock like pain, tingling, aches in balls and heels of feet and an on/off burning sensation, but feet are ALWAYS freezing, but warm to the touch. I don't take any other meds except for the Pred... (Oh, except a beta blocker which I have taken for over 20 years... ) I do not have diabetes either... and they do not know what is causing mine. 😟 I had an ECG (nerve test) but at the time it showed that there was no measurable damage to my peripherals nerves... but now they think it's small small fibre neuropathy. Time will tell! Good luck I hope you get to the bottom of our issue... Oh, I have both GCA & PMR!