So I go see a new Neuro today. I still see my regular doc but she wanted me to go see this guy because of my MS. Well he seemed nice enough and smart enough but at the same time clueless. At least when it came to RSD. Bring up MS and I'm sure he could write books about it. So we chat for about 30 minutes with me explaining all of my symptoms and all and talking about all of my severe pain and what have you. Than he starts the exam. Now we all know how sensitive our skin is. Wind blowing hurts. Loud noises hurt. In general air hurts!!! So he takes out his hammer, tuning fork and a long sharp pointy thing. He taps the tuning fork a multitude of times and holds it up to my ears, face, jaw, etc. Than comes the hammer. Litterally I felt like a piece or meat. Getting the crap pounded out of me in preparation for the grill. YOW!!! In the meantime I said to him - PLEASE BE CAREFUL!! WHAT???? he says like he's talking over a chainsaw or loud stereo or something. Oh he heard me all right. Than he proceeds to poke the living crap out of me everywhere including my neck and back with this pointy thing. And than he jabs the bottoms of my feet. I thought I would cry it hurt so bad.

Now if any of you have ever dealt with neuropathy, it is the most painful gut wrenching feeling. Imagine walking all the time on very hot cut glass in your bare feet. Not for real but that is the sensation. And it never goes away.

So after all is said and done we go back to his office and sit. We talk about the MS. Now I know that I have to have my implant removed before I can have anymore tests done. Simply becasue I will need a MRI and Spinal Tap and I cannot currently have them done. But than he says to me. I am a little perplexed. Mark, MS is not painful at all you know. I said yes I no that. But remember - I have RSD and neuropathy also. They mask other problems and you have to look beyond them. He said OH!! I couldn't believe it.

The big one for me was when he said maybe I ought to see a counselor. Dang it. They just cannot accept that a person can live with this and not be running to a counselor everyday. I felt offended that he even wasted my time. Not that he suggested a counselor. But simply that I felt he should have been more up on his game and better prepared. I got the feeling that he wasn't very familiar with RSD or Neuropathy. I guess that goes to show many are still in the dark ages. Well that is it for me for now. I am so sore from all of his theatrics today. I am going to bed earlier tonight. Oh - and today I was diagnosed with RLS - Restless Leg Syndrome on top of everything else. So I just added Requip to my cocktail.

Take care all. Chin Up!!

Mark

Hey Mark

you have no idea how much I empathise with your statements!!!! I have had that issue so many times...... seriously I;ve been diagnosed with MS by several neuros - because with me the symptoms I have are very similar to MS (paralysis sort of thing etc). Therefore tuning forks etc - neuro's NEVER get when you say you have alloydinia - BUT - I have had great success with if you touch me I will bite you..... though usually you get offered a place in anger management.... (or discharged from physio).. even worse was when a neuro decided to see if I could stand up so picked me up and let go... then wondered why I was screaming in agony on the floor and didn't magically be able to stand up!!! grrr

anyway huge hugs and hope you feel better soon!!!!

do you never get to the point I reach which is to be honest I don't care whats wrong with me I just want it to STOP hurting cos I can't handle it anymore. I don't care my notes say muscular dystrophy, MS, RSD, fibro, HMS, central pain syndrome, ALS, and all that crap oh and secondary generalised dystonia, tachycardia, orthostatic hypertension, osteoporosis and lychomplanas...

I think thats most of the list!

anyway - seriosuyl - offer to bite them and they soon back off!!

lots of love, hugs and false teeth

Rosie xxxxxxxxxxxx

Eeesh - I had very similar experiences with docs and my RSI/TOS dx only my chiro & the advanced PT guys {2} {1 was a teacher of PT} even did the actual positional testing for it.

My PCP and physiatrist were stuck on the RSI part and did not even seem to have a clue about TOS or even chronic RSI or CMP pain.
The goofs kept sending me back to reg work duties.
So not much help for proving any work comp claim either.

Geez they have access to many more medical articles than we do - but heaven forbid they try to learn anything to help a patient!!- sorry my vent!

Hope you don't have to suffer from the exam for too long Mark.
It's like they don't even listen to us...

ok let me tell you how i handle a doctor who wants to tell me to go to counselling and it's in my mind. which was all of one doctor. i told him to F*** right off if he thinks i'm making this pain up. he was shocked to say the least. i also told him that if 5 other doctors had diagnosed RSD where the F*** did he get his degree from.
in short....don't mess with me where my pain is concerned and i'll be polite hehehe.
i've got an excellent psychiatrist. i went to him in 2001 when i lost my son and brother. and when i went to him again this year about this RSD, he admitted he hadn't heard about RSD and was going to investigate. he also told me that pain, whether mental of physical is painful and he was not amused by this neuro who told me it was all in my head.

mark,

i'm so sorry that u had to deal with all that poking and scraping and probing......i don't know why it's so hard to convince a medical specialist that something is hurting.

i've been thru the same kind of thing in the past, but i won't tolerate it any longer....i simply tell them that what they r doing is far too painful and i refuse to allow it to continue......well, that's where i start, but i have to admit that sometimes it sort of goes downhill from there.

i know someone who tried several times to convince her phys therapist that she could NOT put her affected hand in an ice water bath....the 4th time he tried it, she dumped the bucket of ice and water on him.....she had to find a new therapist but said it was worth it.....she's my hero!

hope u feel better tomorrow.

liz

Mark, I am so sorry to hear how you were treated. I really believe that the Dr's who do not know that much about RSD feels intimidated by the patients that do have it and know more than they know. One thing I loved about my old Dr that just quit, was he was always willing to learn from me anything new I found out about RSD. He told me when I first stared using him that he had a friend out of town that had RSD and he wanted all of the info I could provide to him so he could pass it along. Not too many Dr's would do that because they think they know more than we do.

It is very insensitive for a dr to treat a patient who is in severe pain the way he treated you. Apparently when you first told him you had neuropathy and RSD he didn't have a clue so chose to ignore it. You would think a Neurologist would know about these 2 things for sure.

I do hope you are having a better day today, and please don't go back to that quack..

I do love the way Duchess puts it in very simple terms that they can understand..LOL

Love ya,
Janet

Hye, I have rls too! But I was told to take magnesium...so now I have rls AND hemmorhoids AND loose stools! How the heck did you get requip! LOL! Welcome to the wiggly uncomfy club, Mark! Mine starts in my ankles and goes all up my back and into my shoulders at times. Daytime, night time, it's not selective! I hate it. Grrrr!

Sorry about what you've gone thru. Those docs, I could just sock in the nose. I was told I have ms by several neuro's, too...only cuz i had the symptoms...not cuz anything shows up on the mri's. So they sent me for several mri's cuz theydidn't believe them the first time. And with a restless "body" layin in the machine was a job! But, whatever!

Tell the doc next time HE needs to see a psychiatrist...or a hearing doctor! Or take a class in "how to make friends and influence people." Obviously they didn't work very hard on bedside manner in med school. Jerk!

I agree with Frogga saying she'd bite him. I once had a gyno stick his finger "you know where" checking for hemi's. I never had a gyno do that before, so to say the least, I was quite surprised. I "backed off" and asked what he was doing. he said, "Looking for hemorhoids" - my response was, "Hey, if I have hemorhoids, that's MY problem...if you EVER put your finger there again I swear to God I'll break it!" He must have made a note in my chart, cuz he never treaded that territory again...

Anyway, blow it off. Chalk it up to ignorance. Cu that's xactly what it is...

yo Lisa

threatening to bite them always works!!!! :P

(wish I had a spare limb to smack them with but running very short..well in fact out of limbs - and threatening someone with a mouth stick just doesn't work as well!!!)

seriously.. it's the way forward... even if it does mean that the drs think i am slightly antisocial (hi rosie, how are you, can i look at you please? NO, sod off, if you touch me I will bite you!!)

hope you are doing better Mark

Rosie xxxxx

I found this funny as I was too sick to truly care! But a neurologist should have been more careful with you.

I came down with a cold/flu freaking whatever! laffs. And after suffering for too damn long, last Friday I decided I better get to the doctor for some antibotics. I had an earache, runny nose, bad cough etc. Everything hurt.

My internist had taken the long Thanksgiving holiday off so I was seeing a Internist/Pediatrician who was covering that day! laffs. I didn't care, just check me out and give me the appropriate medications so I can get well.

Well she started poking around, and all, and then she says to me "well you are awful sensitive everywhere huh? Of course, this is after she admitted knowing exactly what RSD is. What? Huh? Did this young doc really know what RSD was? laffs.

Well I got my antibotics and got home crawled back into bed where nobody was going to poke and prode me...except my puppy dogs!

And as far as counseling is concern I think your neurologist needs some counseling...and I'll give him a hammer, and you know where I'm going to put it? Might he enjoy a hammer up his

RLS? What else are you going to add to your Cocktail, Mark?