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…
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.....
Thank LT, Yup, definitely! It really seems like he would like to get to the bottom of it, which is good.
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Thanks. Low profile me M! " Unremarkable" would suit me! The other half of the brain still keeps putting that foot in the tackle though!
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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
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
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!
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..
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
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!!
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
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 .
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!!!!
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 !
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
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 ?
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!!
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!
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.
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!
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
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 !!
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?
‘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
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?
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
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
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.
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” 😂😂
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.
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!!!!!
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?
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!
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