Ya Hooooo....

It's time for the Happy, Happy Joy Dance....
That's AWESOME, you deserve a good doc after everything you have gone thru...
&
Dawn

Thanks, guys! I am so happy too, and my adrenaline from actually meeting a neurologist who knows exactly what's wrong and who cares still hasn't worn off.

To start, he said "Don't tell me about what every other doctor said, tell me what has happened to you and how all of the symptoms progressed. I want you to tell me so that I can get an unbiased opinion of what is going on here. You tell me from your own words."... so I told him EVERYTHING, how it started, how the other symptoms progressed and how I have dealt with it. He took the most detailed notes, and was so thorough. I had been telling my parents for weeks that I wanted to get a doctor who would *listen* to me, who would take everything from me, and get an opinion of his own and not take every other doctor's words as "god". I told them that I was very sure that this was RSD, and that I had read so much that I was so confident of my dx being correct (except a teeny seed of doubt that maybe it wasn't...).

Well, this neurologist said, after I told him everything, "I can confidently say that you have full body RSD". I was relieved, that at least I had my dx correct and I could then move on to treatments. He told me that he had interned under Dr Schwartzman, and he knows RSD well. He said out front "I cannot give you the magic wand, I don't have it. Just because Dr S. is my colleague doesn't mean I have access to things he does. However, if anything trickles down to me, I will let you know- possibly things like lidocaine infusions.",

He continued, "Yes, every doctor has doubted this, and have said things like 'you're so young, if it was RSD you'd be better', or 'full body RSD is so rare, I really think it isn't RSD', and even 'RSD doesn't spread... that's unheard of, I highly doubt your dx'... and on and on, BUT there has to be that minority that it does go full body in, there has to be that minority that don't get better; unfortunately you are in that minority. You have RSD definitely, and it is definitely full body. Rare?! Yes, but it happens, and this is just one case".

He told me that his motto is much like Dr. S.'-- he wants you to have more good days than bad, and he can achieve this by using 5 types of medications. He asked me how I felt using narcotics, and asked mom as well. Mom told him that, in the beginning of this adventure (yeah, right!) she was opposed to using narcotics. I, too, had wanted to steer away from them. But after months, we have both come to the conclusion that quality of life for me means more. I need life back. I need to be part of my family, and to do so, narcotics that are strong are needed. No choice in the matter if I am to become a normal human being again. So, he said, “Grow thick skin- people will really say things that hurt when they hear you are on narcotics. Keep an explanation on you to hand to them, like something from RSD Hope (), and know that this is what will hopefully give you life.” I knew that I had to go ahead with the meds, so we discussed methadone and oxycontin. I didn’t know which was better to try first, so I asked his opinion. We decided to start methadone, every 12 hours. He said that he ONLY prescribes narcotics to those with RSD. He recognizes that this is REAL horrible pain, that allodynia can ruin your life.

He looked at my tremors, and he decided that baclofen would be a good choice (which I have been hoping a doctor might try as it is good for RSD...).

And then, we chose an anti inflammatory medicine- Celebrex. We discussed in the future trying Effexor. We decided to stop the cymbalta, and hopefully these new medicines will help with migraines.

What I so respected of him was that he didn't treat me as a child. He didn't go over how to increase the medicines 5 times, he didn't tell me which I had to start first. He let me make decisions, as I so need to. Just because I am 17 doesn't mean I am still a child, since I am under 18. And he saw me as a young adult, capable of handling my medicines like a big girl, like I am!

Hooray, he also doesn't see me as a psychologically messed up person. He sees me as someone in pain, who needs a normal life again, no matter what the cost. Looking at this, I know that I have to be on strong medications to live again. I know that I will probably stay single, as I cannot ask a man to never have children of his own because I need to stay on these medications, which would harm a baby in the womb. I also have no choice about these medications, in a way- my blood pressure either plummets or goes sky high with my severe pain; my pulse hangs between 120- 135! To not harm my heart I have to stay on medications.

This neurologist also explained, his reasoning for wanting to hear my whole story, from the beginning from me was so that he could see what happened when... he saw (and said) that my primary symptoms weren't being looked at, it was these other symptoms caused BY the RSD, and they weren't "the" disease itself. All these other symptoms muddied up the picture, so that the doctors who doubted the dx saw the symptoms as the main thing (and they weren't!!). So, it's RSD, which is a dysfunction of the sympathetic nervous system, and the autonomic nervous system is all starting to play a role in my health situation. My nervous system is a mess... but hopefully things will be improving... very soon.

He was so gentle. He asked me before touching me anywhere. He tested my reflexes as gently as possible. What really touched me (emotionally, not physically!) was that when he walked in the room, he introduced himself with his real name (instead of inserting “Dr” into his introduction), as if he was saying “I am a person, I am not god, I have no power, I will help you. I am a person like you.” Also, when he came in he shook my hand as gently as possible. He said “I know it hurts, I am trying to touch you as gently as I can.” He was careful, and did his best not to cause me pain. I am so pleased with this doctor! I am so happy that I am finally done looking for a good doctor!!

Thanks all for rejoicing with me. Again, if any of you live nearby, feel free to PM me if you'd like this neurologists' info and website.

Ness, I'm really, really happy for you! This is the best thing that could happen to you right now! I'm so glad to see that this doctor has given you hope for your future.

The lidocaine infusion sounds like a good thing to try. I know a few people who had them with good results.

Anyway, YIPPEEE!! I'm so happy you found a doctor who actually listens and cares! How rare is that??

Love,
Bets

VERY rare!! I know it, as I told my parents that I just wanted one doctor to sit down and listen to EVERYTHING, not form his opinion on what other doctors said and let me tell him my thoughts... they said it was unrealistic. It's just that. You cannot find that in the world today, except rarely.

But I DID!! I cannot believe it- I went in there and he LISTENED. He CARED. He wanted the best. To give me a better quality of life that I don't have now. I left crying with joy. At long last! And, something I kept saying I needed was a neurologist, who can deal with my RSD, whatever movement problems AND migraines. He specifically works with all of them. How cool is that?!!!

Thanks!!

Love you sweetie! xxxxxxxxxxxxx

Oh, and he is so worth the wicked, horrible vibrating drive up there! So, I am pleased! Hate the driving, love the doc!!

I forgot to tell you all about the EMGs-- I got the one done on Thursday, and the doctor did just my right side, because she said by testing just one side she could tell me if I did or didn't have a nerve disease.

They turned out normal. Yay! I don't have to go and get the next done, as I have a permanent dx of RSD now.

The EMG sure flared up my RSD!! OWW! I didn't quite realize how bad it was going to be... the electrical zaps of the EMG nearly killed me (erg! ), and then he needles burnt me half to death so I moaned and screamed through it... I am just so relieved that I don't have to go back. The doctor who did it wasn't real compassionate, and she just tore the EMG things (stuck onto my skin with tape) off, as I screamed! She kept doing it, though I explained the whole allodynia thing to her... she said when I winced and moaned in pain as she literally threw a sheet onto me, "I didn't even do anything to you!"... erg, she was hard to deal with, but I am alive, and kind of recuperated after that.

Ohhhhh, IHH--I just read you updated posts about your new Neurologist!

I can not tel you how THRILLED I am for you--to find a Doc who wants to know FROM YOU, the whole history of your problems. And NOT rely on the "questionable medical records/"OPINIONS" of OTHER Docs, who do NOT know RSD, andprobably spent spent less than 10 minutes with you, then put in the records that it was probably "psychogenic", or some OTHER, equally harmful statement. For, a MISDIAGNOSIS is JUST as HARMFUL, because THEN, you don't get the RIGHT treatment!

Ok--here goes--I am experimenting woth all the cool "smiley functions"....

WOOO HOO!

Fondly,