[keep smilin]

Just got home a bit ago from Philly.. over 600 miles in two days..we are all pretty tired and very happy to be home...I had to write....

Dr. Schwartzman is AMAZING!!!! He is just an incredibly knowledgeable..world renown Neurologist..I am now honored to be one of his patients... Sadly I want to share with you that I did not get favorable results...He has diagnosised me with "whole body" RSD and some internal organ involvement... it's the news we didn't want to get..but I am okay..I am not scared and still feel very blessed... We have to fight for the insurance company to come on board in order to proceed which he recommends a 5 day inpatient coma ..sadly, I will have to remain at Drexel in the ICU unit for some time...it's a bunch to digest .. you are all aware of this feeling I am sure... still coming down from all of this ....it may take a little time to sink in...RSD is a !!!

I have to try and get to sleep shortly... I just want to say how much I appreciate your support and that I think the world of each of you!!!!

Love, Kathy

Kathy

[finz]

Glad you're home safe and sound.....wish it was with better news, but at least you have a great doc fighting for you now. Best of luck with the ketamine coma.

[loretta]

Originally Posted by keep smilin

Just got home a bit ago from Philly.. over 600 miles in two days..we are all pretty tired and very happy to be home...I had to write....

Dr. Schwartzman is AMAZING!!!! He is just an incredibly knowledgeable..world renown Neurologist..I am now honored to be one of his patients... Sadly I want to share with you that I did not get favorable results...He has diagnosised me with "whole body" RSD and some internal organ involvement... it's the news we didn't want to get..but I am okay..I am not scared and still feel very blessed... We have to fight for the insurance company to come on board in order to proceed which he recommends a 5 day inpatient coma ..sadly, I will have to remain at Drexel in the ICU unit for some time...it's a bunch to digest .. you are all aware of this feeling I am sure... still coming down from all of this ....it may take a little time to sink in...RSD is a !!!

I have to try and get to sleep shortly... I just want to say how much I appreciate your support and that I think the world of each of you!!!!

Love, Kathy

Kathy

Kathy, welcome home. It's a wonderful feeling to have a kind committed RSD Dr. Happy for you. Hope insurance helps and all your plans work out well for you. Sleep tight and we'll talk soon. your friend, loretta

[bobber]

best wishes to you,I pray that you get the relief you are after,,,

[hope4thebest]

Hi Kathy,
You must be quite exhausted after your trip and the ordeal of traveling but your optimism still shines through..

I am so sorry to hear of your diagnosis...from what i recall you weren't taking many meds, and you umust have been in much pain to be full body with organ involvement...You are amazing to endure as you have...

How did Dr. S diagnose full body and organ involvement? Was it by clinical history or a test of some kind? Would out patient ketamin treatments be of any help and relief?
Take lots time to rest from your trip

Many hugs,
Hope4thebest

[keep smilin]

Originally Posted by hope4thebest

Hi Kathy,
You must be quite exhausted after your trip and the ordeal of traveling but your optimism still shines through..

I am so sorry to hear of your diagnosis...from what i recall you weren't taking many meds, and you umust have been in much pain to be full body with organ involvement...You are amazing to endure as you have...

How did Dr. S diagnose full body and organ involvement? Was it by clinical history or a test of some kind? Would out patient ketamin treatments be of any help and relief?
Take lots time to rest from your trip

Many hugs,
Hope4thebest

Good morning everyone...

So nice to wake up to read your posts... thank you!!!

H4TB... you are exactly right in that I can't withstand meds..it has been solo//cold turkey..I laugh at my self in that I must be stupid or made of steele... Iam so glad you asked the ? of how Dr. S diagnosised my whole body/organ diagnosis...that is the amazing part of this, among meeting him of course...One of his students came in and id my detailed history..(which our sauvy letter was a hit).. history took probably an hr. Soon after in came Dr. S with at least 15 med students... he asked me a few questions but the rest of the time he spent looking around and examining areas including the veins in my hands, neck face ..drew a line on my chest.. asked me a few questions about how I feel my RSD started... combed over one area to the next..easy part for me..so he didn't do any testing just purley examined me... he is so smart!!!talked the whole time dictating my troubles and asking the students questions as in what does this mean... when he was done he kidded with me in that we need to get some cash cuz I need the juice.. he feels 5 day sleep which has to done there ..I would benefit a good chance of pain relief for possible 5 yrs. not more than 10...including boosters to cover pain as it presents it self....His final statement, after I asked him my questions was ..addressing myself and students was..we have a 47 yr. old woman here who is not feeling very well are you?..I replied no sir...

No worries.. things will always work out the way they are meant to..In the mean time..I gotz you all here...It was my pleasure to meet such a nice man and intellegent Dr.

Hugz to you all.... my family!

Kathy

[Momlovetobake]

welcome back home..Glad to hear your back safe. I am so rry for your diagnioses. I really hope the insurance company don't give you a big hassle. It is always good to find a dr that understand what your going through...

[daniella]

Hi. Ok I am sorry if I am confused but you are going to do the coma in Germany or Mexico? I thought no ones insurance covered that since it is not approved in the US? Have you ever had ketamine infusion? If not why did he not want to try that first? Sorry for so many ?'s. I hope things work out for you and it gives you much deserve relief.

[Rrae]

Speechless Kathy!
God BLESS you is all that can roll off my tongue at the moment...
You are indeed strong. I'm so glad you've got top-of-the-line
doctor on your side. PLUS, 15 students!! By that, I realize how much you are contributing to furthering RSD research.
Keep reminding yourself of that ok!

You are at the top of my prayer list.....

You've always been here for everyone.......

Truly Caring
Rae

[kathy d]

Hi Kathy,
Well, you just made my day! I am so happy you finally were able to see Dr. S. He is indeed a wonderful and intelligent man. He is also quite funny too. I get a kick out of him...and his posse. Having at least 8 other doctors in the room while he is examining you is basically the norm for him. I am happy to have the more the merrier since they will learn the correct way about RSD and how we feel then go into the field and hopefully soon by him doing this will have many doctors onboard about the facts of RSD and we will never have to be treated as we all have been in the past from other doctors. I am awaiting the inpatient ketamine infusion too. I have to wait for a judge (for my 3rd visit) to see one for approval. It is a mess with workers comp. It would be pretty neat if we could meet there and have our infusions done at the same time!!! I would be glad to meet you. I have had full body and have it internally too so I feel your pain for sure. I am glad you got your answers and now can fight for your right to be treated and with dignity. You go girl. Take care and get some rest after your long trip. I know it wore you out. I only go about 25-30 miles each way to see him and I am worn out for days so I could imagine how 600 miles would feel. Best of luck,
kathy d