After a hundred times back and forth I think I have some plan. I'm not sure like I said if the weather has an impact but after seeing progress I have been in the worst pain this week.I thought at first it was only when its cold and know my foot goes numb and the ache but now I wonder if the rain/humid makes it horrible too and swell and the pain is severe. It may have no conection at all since my symptoms are so up and down. I do see a trend though. We have non stop horrible rain/cold and now rain/so hot and after before having progress this whole week has been hell. I'm going to try ca for 1month to see. I'm so scared of getting worse and being out there but then I can come home asap or if need treatrment my mom will come there. Now I made an apt at pain management at UCLA hospital and have another apt at the reumo there too. No doc suggested the reumo but suggestions from good friends here and my weird symptoms I thought I should.I need some help with pain and want another opinion after the Celevland pain clinic who wanted the catheter. My meds are not helping and would like to try new or some kind of shot. I have only had 2 in the start but was in my leg at the start.So my next ? I want to try to leave soon cause my anxiety is horrible and go back and forth plus if the weather is effecting I want to get away from this non stop weather rain/humid. I do have an apt at u of m pain clinic do I go to hear what they say and then go to ucla and hear what they have to say. Or do I just go to ucla and then if it doesn't work there after the month do the u of m so I'm consistent? I fear going to U of M hospital and if try something then going away to ca or it making me confused more if I should go. I really don't want to go away but really do feel the weather has such bad effects on my pain. Even before the pn whether it be the start of it or not I ached and my foot froze. I am so mixed but I do feel the weather makes a huge impact but could be wrong. I just want relief.I don't want to leave my mom but need to think of the most comfort of pain. I want the best care in treatment though so where I can get that I want it.The issue with that is who knows. Like the Cleveland pain doc was suppose to be the best of the best and did nothing well he wanted to do the catheter but also said if I did the activity like I'm doing I would be so much better and I'm so not. I'm so scared of shots and pumps not for the pain of it or the procedure but the bad side effects or making it worse but need to do something.I'm still doing more each day and taking my walks but the pain has been insane. I'm able to move and have friends there to help not many but some and my old treatment team is there too for my other issues that are better but still need support. Does anyone know any good doc at ca or how ucla pain program is? I know some too know of my issues but any thought of what to ask for? I know someone suggested a patch since meds are not helping. I'm going to ask more about blocks but maybe in the spine unless there is some presision in the ankle area. Very fearful.I just can't go back to the way it was in the winter of in bed.Thanks for any thoughts. I'm so fearful of making a mistake with the move which right now is just a vaction for a month which is not when you in horrid pain and doing the right treatment for my pain and to not make it worse. I know both places u of m and ucla are suppose to be good well I think. Or is this whole idea bad? Just want the most comfort but need to stay strong mentally I promised my mom and for myself anyway. She will be there though like I said with issues or to visit. I feel bad to leaving her after all she has done like I'm mean but she knows she is my world.Ok thank you.

you must have great insurance or a lot of money to go to so many places. i envy you. what made you choose ucla? i am in ca and thought about going there, but i do not know how i would have the strength to drive.
was it recomended for your condition?
steff

I have crappy insurance but am blessed with the finace issues. I'm for sure going to the u of m pain clinic on Wed cause my pain is so horrible again. I want to hear what they suggest cause there known. I'm actually waiting for a referal for somewhere in california but I know ucla is a good hospital so I thought I would line something up in case. I'm really not sure what I'm doing. I fear going and the way my pain is going I won't be able to but I fear staying with the horrid weather. I think a lot is fear of last winter and also how the weather now is making me hurt so much unless a fluke like I said. When I get a referal from cleveland clinic at ca I will let you know cause it may help you. So I'll wait to Wed for my apt at u of m and then maybe go for the month to see unless this becomes my miracle. Off to a hotel though on Mon cause I rented my apartment from hell so thank god for that.

You should also try the USC pain clinic with Dr Reicheimer (spelling). Or A dr Carden in marina del rey or Joshua Prager. I tired UCLA and liked these better. I also hear Stanford is good.

Dr. joshua prager, or dr. ezekial fink. They are in the same office at UCLA. 310-246-7246. I go to dr. joshua prager and I was working for very reputable ortho- and neuro spine surgeons in beverly hills that operated at cedars. My hand surgeon was at cedars and after having complications and getting ganglieon stellate blocks over 3 months with the doctors I worked for with only mild relief my hand surgeon sent me to joshua prager. He then told me my only option was a Spinal cord stimulator. I was very reluctant to it, but he is so sure of what he knows he will do everything to get it done. His office staff on the other hand arent very smart. But his nurse practitioner and Prager are wonderful doctors, and he knows more than any encyclopedia would ever know about this disease.. Reason it is so hard to get in??? He doesnt want to see a patient unless he is sure he can get their life back... He wants records, imaging, emg, mri, ct and medical history and then he will call to schedule appt. well worth it for a doctor that doenst want to just get you better. but also get your life back to how it was!!!

daniella,
What ever you do I pray that you find some piece of mind and pain relief. About a year ago I was on some boards asking people who had lost their feet and legs if they suffered a great amount of pain as I was considering having my right foot amputated to get relief from pain. I still have it and can move around with a cane. I change my medication to add methadone to my Lyrica and found some relief 3-4 range plus being able to get some decent rest at night. good Luck to you and everyone else.
Lanny

Please notice that this thread was from 2 yrs ago, and just bumped up today.

I hope Daniella comes on here with an update.

Hey all. This is from such a long time ago. So much has happened since this thread I have no idea where to begin. I have seen countless specialists and pain docs since this. I have rsd and peripheral neuropathy but what my current pain doc feels that the rsd is causing most of my high pain. I had a lumbar block and lidocaine infusion which made me worse so before a scs he would want to do a blockade because if that made me worse the scs could as well. Right now I have went back on many of the meds like neurontin etc and waiting to see what happens with that. I finally found an anestesolgist who is willing to work with me after many like at Cleveland Clinic it was there way or the highway. My condition has spread to both legs and I have suffered also from a severe eye issue that had me at 40 plus eye apts and I would say 11 specialists for that. My leg pain is still very high but I am able to do a lot more physically. My mental state from when I came here is a lot better since I have been working with a psych. I am a nightmare case due to my age,history,and that I don't respond to the invasive treatments and many meds.
What I have learned through this is that like at UCLA I was given a video on the scs and he sais that is what I need and would only do that. There were many less invasive treatments to try first and he did not even listen or answer any ?'s. I am big on 2nd,3rd etc opinions because of docs just rushing into things or making mistakes. At the start of this they wanted to do tts surgery on me but that is not what I have and also should be one of the last things regardless to jump into. It is scary and frustrating and I have had more mri's,emg etc to rule out other possibles.
Just trying to take 1 day at a time and hope for a better future that is less pain and can regain a young person's life.
Thanks all and feel better to all