[GreyHoundLover]

Hi Again everyone,

For everyone who read my previous thread and introduction you know that I have been having very odd symptoms since my attempted blood donation in October of 2006.

The stinging pain around the site which stayed but seemed to be healing seemed to worsen in May or so when my arm became swollen and felt as though it was engulfed in flames and also felt like cracking when moved in certain positions.

I've been to a number of doctors who all agree my symptoms must have come from the venipuncture, because they couldn't find any other reasons for symptoms but also didn't know how to treat it. EMG's and MRI's found very small but "unremarkable" (as they say) findings.

I went back to my Arm/Hand Surgeon today who has been evaluating me and prescribing Orthopedic Therapy for the past few months. Today my arm was still swollen, I mentioned the unbearable fire that seemed to exist on the back of my shoulder and neck last Friday. The swelling has been traveling up my arm and now my nerves are compressed in my cervical area. He compared both of my hands and noticed my left (injured) side was moist while my right was completely dry and had more blood circulation. He is now convinced I have VP CRPS Type II. (Venipunture induced)

He is sending me to a very good Pain Clinic in Boston and is trying to get me in immediately for a MRI of my spine and to schedule a Ganglion Nerve Block. I hope this works...although I realize the relief may not last very long. He seems very committed to helping me. You know, sometimes you go into a doctors office and they haven't seen you in months and while you're sitting there they're reviewing your chart? HE didn't have to...he remembered our conversations, the Cortisone shot, everything. He really seems to care. He even held my hand and looked right into my eyes in a very sincere way and promised he would do everything he could for me. It made me cry...because I've been desperately waiting for someone to say those words for so long now.

While I'm disappointed I have this, I knew I had it all along. Or some for of it at least. I'm glad that I have 'something' as I'm am sick of hearing "clearly there is something wrong but I don't know what" by every other doctor I have seen. Very frustrating, you long time suffers probably understand this frustration better than anyone. Now I am scared!!!!!!! So are my family, friends and co-workers.

For the past two days my lips have been tingling, I feel tightness in my face and even my teeth feel as though I had bitten into something very cold. (That's the best I know how to describe it) I really don't want it to affect my face, and not just for vanity reasons, but also because my brain lives behind there!!!!

Please say your prayers for me friends, it looks like there is a long road ahead for me. And I will probably be seeking your advice and stories of similar to help me along. I've found great comfort in some of your posts so far and I thank you.

This weekend I intend to help rescue more lovely Greyhounds, hopefully they will keep my mind off myself!

Your thoughts on what I should expect, although they may be frightening, are always welcome. I can't deny what's ahead for more than a day or two!

Good night friends. I wish you all peaceful and painless dreams...

[Desi]

Originally Posted by MMoran

Hi Again everyone,

For everyone who read my previous thread and introduction you know that I have been having very odd symptoms since my attempted blood donation in October of 2006.

The stinging pain around the site which stayed but seemed to be healing seemed to worsen in May or so when my arm became swollen and felt as though it was engulfed in flames and also felt like cracking when moved in certain positions.

I've been to a number of doctors who all agree my symptoms must have come from the venipuncture, because they couldn't find any other reasons for symptoms but also didn't know how to treat it. EMG's and MRI's found very small but "unremarkable" (as they say) findings.

I went back to my Arm/Hand Surgeon today who has been evaluating me and prescribing Orthopedic Therapy for the past few months. Today my arm was still swollen, I mentioned the unbearable fire that seemed to exist on the back of my shoulder and neck last Friday. The swelling has been traveling up my arm and now my nerves are compressed in my cervical area. He compared both of my hands and noticed my left (injured) side was moist while my right was completely dry and had more blood circulation. He is now convinced I have VP CRPS Type II. (Venipunture induced)

He is sending me to a very good Pain Clinic in Boston and is trying to get me in immediately for a MRI of my spine and to schedule a Ganglion Nerve Block. I hope this works...although I realize the relief may not last very long. He seems very committed to helping me. You know, sometimes you go into a doctors office and they haven't seen you in months and while you're sitting there they're reviewing your chart? HE didn't have to...he remembered our conversations, the Cortisone shot, everything. He really seems to care. He even held my hand and looked right into my eyes in a very sincere way and promised he would do everything he could for me. It made me cry...because I've been desperately waiting for someone to say those words for so long now.

While I'm disappointed I have this, I knew I had it all along. Or some for of it at least. I'm glad that I have 'something' as I'm am sick of hearing "clearly there is something wrong but I don't know what" by every other doctor I have seen. Very frustrating, you long time suffers probably understand this frustration better than anyone. Now I am scared!!!!!!! So are my family, friends and co-workers.

For the past two days my lips have been tingling, I feel tightness in my face and even my teeth feel as though I had bitten into something very cold. (That's the best I know how to describe it) I really don't want it to affect my face, and not just for vanity reasons, but also because my brain lives behind there!!!!

Please say your prayers for me friends, it looks like there is a long road ahead for me. And I will probably be seeking your advice and stories of similar to help me along. I've found great comfort in some of your posts so far and I thank you.

This weekend I intend to help rescue more lovely Greyhounds, hopefully they will keep my mind off myself!

Your thoughts on what I should expect, although they may be frightening, are always welcome. I can't deny what's ahead for more than a day or two!

Good night friends. I wish you all peaceful and painless dreams...

I am so happy that your arm/ hand surgeon finally dx you right. I hope that the pain clinic in Boston does really well for you!! I have had two SGB (Stellate Gangllion nerve blocks done.) (My RSD was caught early) I had carpal tunnal surgery and this is what caused my RSD. Anyway, getting back to the SGB, like I said, I have had two and I am in remission from the last one. Please have them put you to sleep and have them use fluroscopy. I had three done by my old pain management dr. and he never put me to sleep, never used fluroscopy, etc. (I didn't know at the time, until someone here, told me to have it done with that) Anyway, not one of those blocks worked for me!! because the Dr. thought he was all Mr. big shot and could guess where the Ganglion nerves were in my neck!! Sure took my $$$$$ though!! Anyway, when I go back to my pain Dr. who I have now, I am going to see if he feels indeed I am in remission?? My blocks lasted a good 14- 15 hours. That is why the PMD does more than one block, the next one should help even more.. then the third one should help more also. I do Not want to get your hopes up though because every one is different. I am just saying what worked for me. I am so very, very happy that you found a good compassionate Dr. who really cares for you!! This is hard to find in a doctor!! He sounds wonderful!!! Did you tell your Dr. about the symptoms that you are having with the lips, face teeth?/ tingling?? Please do!! I understand why your afraid of the unknown, but believe me, I have been there sweetie!! P.M. me anytime (Upper right hand corner of RSD page). Seems like we have something in common as to the SGB your going to get.Of course I will pray for you. I am a very firm believer in prayer. I have and still have people praying for me. I think it's great how you are rescuing greyhounds!! Good for you!!! I do hope you call about your face tingling (I don't want to scare you at all, better safe to tell your Dr. about this new symptom than not) rest, eat well and write, P.M. (Private message me) any time. We are all here for you!! God bless and take care!! ~Love, Desi

[dreambeliever128]

I am so glad that you have found a Dr. that cares and that knows enough about RSD to diagnose it and run with the blocks. When you talked about how your Dr. treated you, I thought of mine. He's been right beside me for 17 years first with other problems and then the RSD. I believe knowing we have a Dr. that is willing to help us with the RSD is a first step. Someone said something about the weekends being the worst because the Dr. is out of the office. It makes us feel more alone with the pain that we need help and can't get it with this. Hopefully he will help you get it under control. It was an arm/ hand surgeon that diagnosed mine when no one else could.

Like Desi, I really believe in people at least getting the blocks. I had 3 and they did put me into remission. You might still deal with some symptoms but it will help deminish the pain. That's what we want, isn't it?

I am sorry that you are having to go through this but at least being here with friends you have the great support you need and you will learn so much.

Like Desi, I do believe in prayer. I do get angry with God at times but I still know he's walked me through what I have been through. My prayers are with you in this and I will pray for you that these blocks do help you.

Ada

[InHisHands]

I am glad to hear that you have a good doctor willing to help you- so important that a good professional be on your team.

Oh, yes. It definitely is good to know you have "something" because you can try and treat the something instead of sitting around confused. I certainly hear you there- I dealt with that and it is terribly frustrating. It is still so hard, so hang in there, hun!

I sure hope the blocks help you out. Sending you some (((pain free hugs))) and of course prayers.


ETA: I know the feeling... it is so scary when it spreads... hang in there. A good attitude helps. (and you are doing a mighty fine job. Distractions definitely help! Go girl with the greyhounds, that's wonderful!!)

[GreyHoundLover]

Thank you for your support Desi, Ada and IHH, it means so much to me.
I'm truly grateful I have nice people like you guiding me through this otherwise lonely experience.

I also wanted to let you know, I did bring the tingling up to my doctor so he is aware but didnt comment about it.

I still havent heard from the Pain Clinic yet, but I hope to soon. Ada, you were one of the first ones to suggest a Pain Specialist to me, so I was pleased when my doctors plan included the Pain Clinic.

I'm glad these blocks worked for you, even though it sometimes lasted only a little while. I'm saying prayers for you as well....all of you.

And Desi, I'm going to ask for Fluroscopy, thank you for that suggestion. I will PM you soon as we definately have a lot to share with one another.

I'm going to be as optimistic as possible. I'm still under that 3 year mark everyone has warned me about, right???? I'm trying to get in that "determined" mode where I can say "I have this, it doesnt have me". But I just dont know how to do that when no matter what I do seems to spark a flare up. I'm going to be grateful for what I have, and know that even if my life is nothing but trying to avoid the pain at least I have a life to fight for.

Also, I'm going to tackle that laundry that's piled up and even try to make my bed again in the mornings Plus, I'm going to do something with my kids, even if it causes me to spend all night in the bathroom crying.


I'm also going to check back here daily for motivation, assistance, guideance and maybe a few smiles.

I'll be sure to kiss my Greyhounds for you all friends!

[GreyHoundLover]

IHH,

I wanted to mention how important your understanding is to me. You've definitely made me feel alot less lonley in the past few days. I think it's so important, especially regarding something which is so uncommon as this, to have people who understand. It really makes a world of difference.

Please let me know if there is anything I can do for you in return.