Oh Kelly.......I am so sorry for your pain and frustration. I can only imagine how disheartened you must have been to have traveled all that distance in pain and to only end up with more questions than answers. I am not a doctor, but I suspect all that you've said you're experiencing is due to the RSD. It sounds like your doctor may know far less than we do about it.

Isn't there ANY other doctor that Medicare will let you see that may know more about RSD??? The blood pressure could have been high from the stress of the visit, the RSD, or the pain. I know my blood pressure and body temperature fluctuate a lot with my RSD. It is scary and annoying to lose control over such basic body functions.

She could be taking you off of Xanax and replacing Klonopin because Klonopin is cheaper. I take that and it is actually listed as one of the meds good for spasticity of the muscles with RSD. Xanax could have a different property to it that isn't as effective. That may actually help you more.

Again, I am sorry for your pain and frustration. I hope you get proper treatment as you deserve it and you clearly aren't getting it. Please keep us posted!!! I wish you all the best!!

thank you Mominpain

you are right it is so frustrating, the Nero she wants to send me to use to be in with one of the Nero Dr's I seen back in Feb of 07 and he thought I was drug seeking, ha, even my GP stop that, she told him that in no way, that I was
she has been seeing me for 20 years, and knows its hard to get me to take anything, and ran a MAP on me witch came back ok, so we did get that cleared up, but I was not taken Series by that Dr, witch did not help
when I can back from NJ to MI ,,I came back due to the Dr's out there all said I need surgery on my neck, but my family was all here in Mi, and it would be better for me to just come back here so that they could take care of me
well, we sent up to see that Nero Dr from there, when I came back, As you know you are only given a mouth at a time on your pain meds,
when I went in to see him, I had 3 weeks left, and I did ask him, who do I go to get refills, only cuz I had 3 weeks left, and I was told DO NOT JUST STOP
TAKEN THEM! but they set me up with a pain clink, and they still had not had a Apt set up, with the pain Dr
well, almost 3 weeks later, I was almost out, so I called and he was out of town, his Nurse, told me to go back to NJ, NJ! I said I can't, I am from here
and I only had 2 day's left, of meds, so I did call my pain Dr' in NJ
he called them, and gave them heck about it, I got a call back to come in and pick up the scrip, for 2 weeks,
ok I got my pain meds, but when I had to go back in for a recheck after that Dr came back in town, HE GAVE ME HECK!! and yelled at me, that he was so mad at me for having my Pain Dr from NJ call and make them write me my pain meds, that he would not even talk to me about my neck, and that was the last time I seen him ,,,then the next thing I knew I was being labeled as a drug seeker,
that sure did not help me at all,
so now I am going back to the Nero that was with him back then,
but I am not on any pain meds, stop them over a year ago,
just so sick of all of this,
hope you can understand what I am saying in here, I know my spelling is not the best, blush,

Every thing I read spams are part of RSD, and you are right Klonopin
works better for RSD, so I hear, its funny, last year one of my Dr's wanted me to go on it, and my GP did not think I needed to, but now she dose,
UGGG makeup your minds!!!! I did not say anything to her about that,

is Anyone getting help with Klonopin?
thank you mominpain,
Kelly

Oh, hon......it just makes me so MAD when I hear how you're being treated. Anyone with a computer (much less a mind) could look up RSD and KNOW how painful it is. You should NOT have to be begging for medication when you legitimately need it. Does anyone in your family go with you to your appointments to back you up??? I take my husband with me sometimes.....both to keep ME from strangling anyone and to give me a little more credibility. Plus, it makes doctors think twice about mistreating you when there is a witness. You do not deserve to be yelled at by ANYONE. Especially not by someone who's JOB it is to take care of you. If he had been responsible, he would have made sure his patients were taken care of BEFORE his vacation. Uggghhhhh......I am SO sorry for you.

Yes, I take Klonopin.....it does help with the spasticity and it helps me relax so I can fall asleep. I take it around 7pm to mellow out before bedtime. It is good for anxiety, too, which many of us that have RSD suffer from as a result of the disease. I hope you will find that it helps you, too.

You're absolutely right, many of these medications should not be stopped suddenly. I slowly decreased my dose of Klonopin over several months before I got to the lowest dose that still works for me. It sounds like you're only trying to be responsible about your meds and they should respect you for that.

BTW, another trick I've heard is to take a tape recorder with you to your doctor's appointments.....especially if no one else can go with you. You can simply say that your memory isn't the best due to the RSD and you want to be able to recall everything that he says, and then turn the tape recorder on. He is less likely to act up knowing he's being recorded.

Please keep us posted on how you do with the Klonopin and with the other neurologist. Keep sticking up for yourself, Kelly.....you have a legitimate right and need to be treated properly for this painful condition. You can vent to us anytime. We have all had our own horror stories and I'm sure most of us can relate to how you're feeling.

Take care of yourself!! Hugs!!!

yes my mom was with me, and she did not like him ,,,
I did take a tape recorder with me when I went to the IME DR! and got him
the hole 20 mins he spent with me, and even letting me fall down, due to that I could not get up on the table, for him, and I yelled for someone to please get me my W/C my leg was giving out on me, and I fall back and only landed half of my butt in it, no one gave out a hand to help me, its on there, and I was in full spasm and was falling out of my W/C only then did his nurse reach out to help me, but I yelled in pain, from her garbing me that way, and then he said why are you falling out of your W/C and why are you yelling,,, OMG!
the table he wanted me to get up on was one of the old wooded ones,
and a tiny little step for me to step on, I ask for help or for them to lift me up there, no one help so I knew I could not get up there, UGG only to give it my bast, and down I was going, but I do have all of it on tape plus my best friend was right out side of the door, ,,,,smiles she could hear everything going on

Oh I know we all have are horror stories, and they make me just as upset about them then mine,

ty and peace
Kelly
PS that Dr, that did that to me, saying I was a drug seeker, also told me
I am not your Dr, and I am not going to treat you, why did he say yes to seeing him then? and I told him I came a long way to see him, only to be told no!!

thank you mominpain

Oh Kelly, that just breaks my heart for you.

The doctors you are seeing are clueless to say the least. You need a doctor that has treated RSD and understands the symptoms and the agony and the need for the right medication.

I would call around to see if any other doctors in your area have treated RSD.. I wouldn't go back to the ones that have abused you by not treating you properly..

I had a similar incident when I had my first lumbar sympathetic block.. I came in, in a wheelchair, I can't walk
without my walker..and only then on the tips of my toes on
the bad foot.. They expected me to get out of the W/C and climb on the table.. They eventually after heckling me to climb up they realized I couldn't.. DUH!! They finally lifted me up there.. Then they started right on in with the block without adding any sedation to my IV until after they started.. I refused to make another appointment for my second block.. No way!

I have rolling spasms in my thigh that is sometimes helped by Baclofen..Some nights are ok and others are terribly
painful..

All I can say is we all deserve to be treated with compassion and knowledge.. I wish that for you,Kelly!

Hugs,

Pauliana

thank you Pauliana

I am sorry you had to go though that,
that is BS, that you had that happen to you,
I do not understand them they can see it but still think you can jump right up
on a table,

Your spasm are bad also,, I am on the same med, for them also, and it is helping, but not when I have to go out in the cold, or over do it in my home,and for a drive for an Dr Apt
that is the only place I go out for now, as soon as I am hit the cold I get a flair up, and then after I get where I am going, I am in full spasm,
I cannot drive no more, so someone has to take me, I hate this!
and the lost my independence, as I am sure a lot of RSDers have lost there independence, no fun in that,,,

I had to go in for a visit not to long ago, and I could not get up on the table
this is at my GPs office, but it took the nurse and my helper to get me up there, when I did I was in spasm so bad, that the nurse would not leave my side, then the Dr came in, and told me helper she had to stay next to me,
they knew I could of fallen off there,

I guess some Dr's think you can just stop everything going on with you just to please them, HA!
if that was the case, why are we all here? I hate looking and feeling like this

thank you Pauliana and sorry to hear about what happen to you,
Peace
Kelly

I DO remember you telling that story now. I wish there was something else I could do to help you. Just know that I care.....I wish I (underlined, boldfaced) had been there. That doc wouldn't have seen what hit him! I'm small but I'm scrappy!!

Hugs to you. My thoughts and prayers are with you....