Hi all,

I've been MIA, but not hiding this time: when I brought my computer to Best Buy (under warrantee) they warned me that it would be ten business days until they would even be able to look at it; they were telling the truth. I got it back 17 days later and was told there is nothing wrong with it. Someone had removed the DSL filter from our home phone line. That "someone" is my 20 year old grandson, an amiable idiot with a high IQ and absolutely no evidence that he has any "common sense" at all. I called ATT and they fixed the problem the next morning.

I was scheduled to see my doc on Jan 17. My son usually drives me on these quarterly 300 mile R/T trips, but he had accepted a job 300 miles from here on Jan 3, so work comp had to provide transportation. I told them I would need a van with a lift so I could use my power chair; what showed up was a mini-van with no lift and a driver who told me he wouldn't push me in my manual chair from the parking lot to the doc's office. I had to reschedule my appt for a week later.

Some may wonder why I would be willing to endure riding 150 miles each way to see a doc who can't do anything for me except write prescriptions. Here's a hint: read KateLynne's post Am I the only one...?

I have another grandson; he's 18, and unlike Brennen, he isn't what you'd call "amiable". The word "sociopath" comes to mind: I let him live with us for a while, but when things kept disappearing I told him he would have to leave. The rest of the family told me I was being unfair, and they felt so sorry for him that when he showed up homeless for Thanksgiving dinner, they didn't bother to tell me that they quietly let him move back in.

To make a long story short, on the weekend following Thanksgiving, my wallet disappeared; in it were all the prescriptions my doc had written on Oct 18. The wallet reappeared, minus the prescriptions. I still had a reflill for my hydrocodone for December, plus enough hydro's to last until I saw my doc again - except I had to reschedule.

In September, the scrip for oxycodone never arrived in the mail, so I had to phone my doc and ask for a replacement, which he sent. We all know, however, that most doc's consider reports of missing Schedule II prescriptions are a red flag of possible abuse. My doc has been treating me for ten years and we have an excellent relationship, so one missing scrip was not going to be a problem; I did not want to have to tell him another scrip was missing though.

I wouldn't have had to except that I was gonna run out before I could see him and get another handful of scrips. I told his nurse what happened (another red flag), and he called in a scrip for hydro that day. But I still had one more "red flag" for my doc.

Those who were here on Nov 29 may remember my first post after months of no posts: it was the one in which I later mentioned that I thought I would eventually have to commit suicde rather than enter a nursing home or hospital to die from slow starvation. I weighed over 220# when I was hurt, and had gone down to 130# and was still losing weight.

A couple of weeks before writing that post I was pretty sure I was gonna die, so I decided there was no point in taking less pain meds than I needed. I gave up my macho and decided to stop gritting my teeth through the pain. Guess what? It's hard to eat while you're gritting your teeth. My doc had prescribed six oxycodone and three 10mg hydrocodone daily, but I began taking eight oxy's a day.

When I went back to see my doc on Jan 24, I not only had the "red flags" of two missing scrips; I also had to ask him to increase my oxy scrip to eight per day. A lot of you have probably had to ask for an increase, and many of you can probably remember the frown, the long silence; those tactics docs use to get you to back down.

My doc said: "I was wondering when you would finally ask". That is why I am willing to endure a painful 300 mile R/T in order to see him.

A final note on this topic: I mentioned that I weighed 130 pounds in my last visit; I was sure that I had finally gained weight this time. It would be the first time in more than a year that I hadn't lost weight. The nurse actually had to support me when the scale said I weighed 129 pounds; I thought I was going to pass out. I remember asking myself; "How can this be?"

My doc told me how. He had called someone in to make sure the scale was accurate, and the guy found out it was weighing four pounds heavy. I actually weighed 126# on Oct 18. I had gained three pounds. I know my doc had that scale checked because he wanted to know exactly what was going on with my weight.

I think he is the most human, most caring doctor I ever met; something rarely found in a neurosurgeon.

I still have a way to go: he is going to implant an intrathecal pump once I gain some weight. This should be a major help in trying to write my article, since it's hard to work on a major project when I never get to sleep more than 3 hours before pain wakes me. I believe that gritting my teeth through the pain and sleep deprivation have been the major barriers to being able to write the kind of article necessary for publication in a medical journal. One down, one to go.

I may have problems writing a major article, but I can still write posts about RSD. In fact, I am working on one right now; a reply to KateLynn's thread about doctor's not believing RSD is real. There are good reasons for not believing it is real, and I will explain them in my reply.

I've reversed my weight loss, but I'm still very weak and have no endurance at all. I want to reply to several posts; especially to express my outrage over what Allen's doctor has done to him. That man is a disgrace to medicine, but unfortunately he is only one of many. I would like to reply to other posts, but I can't; not if I want to reply to KateLynn and the other horror stories on her thread.

I think I have something important to say about that, so I hope others here will forgive my not replying to your posts and hope you will learn something useful in my reply to Kate...Vic

Hi Vic,

What a very nice surprise to see your post, what a story. I'm relieved to learn that you like your doc so much, I hadn't realised that he was one of the good guys. Not that I know anything about it, but I reckon you are an ideal candidate for a pain pump. Out of interest, have you ever done any research into Prialt, the cone venom drug? I haven't found anyone who has tried that yet, it is only administered as an intrathecal pump - but it sounds seriously worth a try if at all possible (provided it would work with your other complications, of course...).

Can't remember who and where, but one of the current posts here has someone reminding us that pain itself can be very damaging, that's so true - I sincerely hope that this all happens for you very soon - and I'm delighted to hear that you've ungritted the teeth for long enough to get 3lbs of meat on your bones.

So...well, yes, I won't bait you with "what's this RSD isn't real" business, I'll just wait on it - always such a pleasure to read your witty, elegant prose,
xxx all the best!

It is truely nice to see you posting again! I just went through a monitor change here, the old one crapped out a few days ago. I got one of those flat monitors, man do I have desk space now

Thanks to Mike I have a formal complaint against the doc that sent me to withdrawals. THANK YOU Mike!!!!

The state already called me, and it looks like this medical clinic will get into heaps of trouble, and worse if they did this to anyone else.

One of the doctors there that I email back and forth with, di give me a name to check out, but it will be at least 4 months to get an appointment

Check your email bro, sent ya a messge. Plus this vascular doc that I met really likes what you have wrote in your articles. He is doing some research, and is going to let me know what he has discovered this weekend. I will let you know in email. To bad he is on the east coast, or I would go pay him a visit lol. He is a real standup type of guy though, and I respect what he has to say so far.

Take my friends
All the best!

Oooh, Allen,

I'm so delighted you've managed to file a formal complaint, this place really should be taken to task for the treatment meted out to you; I had a feeling this doc friend would be good news - you of all people need some good luck in your life, maybe the tide is turning...

Can't wait to hear what happens next on this!
all the best

Thanks Pat!

Your support means the world to me!

Well the doc wrote back after doing a lot of research on CRPS, and vascular systems. Wouldn't ya know that Vic is 100% correct! There is no information relating vascular to CRPS. Everyone thinks it is a nerve disorder, and treats as such. Well this vascular surgeon said he is a very busy guy, has to do so many procedures a month or he loses his Excellence certification. Very important now a days as all the doc's are trying to market for everyones dollars. Again something that Vic has related to.

Anyways, he agrees that when there is an ischemic problem, there is a 6 hour window where you have to either get the blood flowing again, or there will be tissue damage, and nerves are the most sensitive to this. So he agrees that hypoxia can and does cause CRPS. He said they call it by other names usually, that is why you don't hear them saying CRPS.

Unluckily though, he cannot take the time to chase this down, and document it as he is too busy in his current field. He said the squeaky wheel will get the grease sooner or later, so keep up the great work and studies in this area. He will do what he can as the cases come up in his work though, as he thinks it is groundbreaking research.

So that makes 2 vascular surgeons I have had contact with backing up Vic's research.

Vic you are DA MAN!

I was gonna email this to Vic, but thought it would be of benefit to everyone to read. He also pointed out some pictures he found of people with RSD on the internet. He linked me to them, and said see how they look like diabetic problems with all the discoloration. That is from lack of circulation, ie: ischemic conditions. There was about 4 pictures. I looked around further at all the sites I have saved, and realized everyone of the pictures where it looks deep purple, or blueish is most likely the culprit of ischemic conditions. Thus tissue damage, and most likely a lot of nerve damage, as he said they are more sensitive to this condition.

It didn't take a lot of proof to sway me though, as I have been in the ischemia camp since day one of my ordeal with RSD. Getting to know Vic, and his work just solidified my position further. This was just icing on the cake!

Well everyone take care, and I wish less pain on everyone!

Hey Vicc

I just wanted to say that the eating problem (clenched jaw from dystonia/ RSD/ pain) is why many of us (well, many people I know) are either fed through PEG/ NG feeds or are on syringe feeds (that's me! how cool am I?! - though luckily not all the time!)....

Did your drs not consider them? luckily I only have 2 taste buds at the moment - prawn and lead (well. what I imagine lead would taste like!) so I can cope with mushed vegetables, fibre and other stuff which is liquidised and then "syringed" into my mouth..(not good when you go out to dinner with mates or have carers that can be a tad dim at times--> who then shoot mixed mush stuff onto the ceilings with the syringe.

(Try making up a feed which is thick enough to swallow but thin enough to go through a clenched jaw and you'll know what I mean - especially if you imagine it dripping down from the kitchen ceiling!

Anyway - that was just a thought. (though NG's REALLY hurt) that it might help if you went on to syringed feeds on bad days or something

Rosie

Vic,

I am so glad that I saw your post on BT (the one you later removed because it was intended for this forum) because it led me here. I had been out of the loop for a long time and didn't realize that the BT crash had been so devastating; not to mention that there was now a totally separate NT- RSD Community.

It bothered me when I logged-on to the new BT forum because there were so many familiar names missing. However, I noticed your update post and realized that it was me who has been missing in action. So it was like a shot of good medicine for me to find my way here.

I'm so glad that you are hanging in there, and actively posting. You along with several others have been anchors of inspiration to me in my struggle with RSD. I had been feeling like I had lost family not seeing many of the regulars posting. Now I feel much better finding you all.

Hey EJ, it is so good to see you.

Your post brought an idea to mind: maybe we can collectively come up with a way to let other friends from BT know where we are.

Since confidentiality is so important, a thread asking for information is out. Still, we're a pretty creative bunch, we should be able to come up with something...Vic

allen so very glad to hear your news about the non-doctor you had!!!!!!
vic----you are soooooo the man!!! i can read and understand every post you send...have helped educate me with our horrors with each and every one..for this (and for you being you) i thank you from the bottom of my heart... linda

Can someone bring KateLynns post Am I the Only One..?? up to the top???

I can't find it anywhere.

Thanks ahead of time....
DebbyV