[LisaLisa37]

Hi Tammey. I do have a big University hospital nearby but 1) they are not accepting new patients with my insurance & 2) you need referrals for everything here. I was talking/crying to my fiancé today while being stuck in a car for 7 hours today (i wouldnt wish what I went through today on my worst enemy) and he is contacting a dr friend tomorrow for advice. I am in so much pain today i want to die- like my whole body is buzzing with electric shocks. Something's gotta give. Once i feel a bit better i will begin to research other options- maybe traveling to where i dont need a referral. I can relate to feeling like your IQ is dropping! My brain feels like mush quite often lately. Do you have pain? If so, how do you deal? If not, what symptoms do you have to deal with?

[Tammey]

Perhaps your insurance company would be a good resource. They should be able to point you to providers in your area that can help you. If they have a nurse call line, call it and tell them you are sick, in pain, and need help finding a doctor. They should be able to guide you through the channels they require you to take. If you get resistance, put on your assertive hat, and flatly tell them that they have an obligation to help you find an adequate provider, even if you have to change doctors. (Sounds like you could use a second opinion anyway). If you feel the call would be too overwhelming, your fiance can call, just stay available to authorize the conversation.

As far as my issues are concerned, I have been in pain for several weeks, and lost a great deal of function in my right arm. It has been slowly improving, but when the pain was at it's worst, nothing helped. I did try some ice on the areas that hurt the worst, and it helped while the ice was on those areas, but the pain came back just as strong when I took the ice off. I have been having headaches every day, and was very fatigued, which is also improving.

I saw my primary today, and she has ruled out cardiac, arthritis, lyme, thyroid, diabetes, and other autoimmune issues. She got me an appointment with my neurologist on Wednesday, and I have an MRI this week also. She feels that her first diagnosis would be MS.

I have a strong family history for MS. A cousin on my dad's side is in a wheelchair, and a maternal uncle committed suicide shortly after he was diagnosed. (Not an option for me! I want to live until I am a very, very old lady!)

What really frightens me is what this is going to do to my nursing career. I am a Critical Care and Emergency Department Nurse, and my job requires that I be mentally alert, and have good dexterity. (Neither of which I can rely on now). If I cannot reliably perform nursing tasks, then I cannot work with patients. I know that some accommodations can be made, but I couldn't think this last time I had a flare up, and I can't in good concience jeopardize the safety of my patients. I am making plans to go a back to school and get my masters as soon as we sort this mess out, and I am on a treatment plan. Then I can teach nursing, and wont be a risk to the people in my care.

I also feel very guilty about how this is going to affect my family. My husband and I will be celebrating our second wedding anniversary next week, and we were looking forward to a healthy, happy retirement. He is a nurse too, and we both know what we will be in for as I continue to lose function. I am also worried about our daughters, one of which just graduated from nursing school, and the other is in high school. I do not want them to change their life plans to take care of me. (or in anticipation of taking care of me). I want them both to be independent and happy, not worried about whether or not I need help.

So....If the MRI shows MS, then I am going to be very aggressive in treatment. I want to retain as much function as possible, for as long as possible. I have seen as many miracles as tragedies in my career, and will not give up. I have encouraged many patients to dig deep and find the strength to continue treatment, I should at least do the same for myself.



Tam

[LisaLisa37]

I will be able to figure out how to proceed based on what my primary dr tells me on Wednesday. I have two maternal aunts with ms who are are not very open about their struggles. Just when I feel like I cannot handle any more I see/read something (like your post) that inspires me to keep trying. I have and always will be my biggest advocate and need to be reminded of that sometimes I am sorry for the pain you are in and for having to deal with the planning of your career in the future. Sometimes I feel like the loss of life as I knew it is more upsetting than my symptoms. It's difficult to let things go that you love- change is never easy. I appreciate your responses to my posts. This site has helped me to not feel so alone lately. Good luck with your upcoming appointment & keep me posted.

Lisa

[jrosiebd]

hi! i was diagnoised with rsd of my left arm in august 2012, after trigger thumb surgery april 2, took 4 doctors and 5 mths to see that i have it, now it has spread to my right arm, neck, left leg and foot, i now go to a pain clinic, on morphine 30 mg 3 times a day. and 15 mg for break thru pain and gabapentin 600 mg 5 times aday, i hate the morphine i have begged the doctor to give me something else, she insist its the only thing that will help me, can someone tell me what else would help? also been trying get my workers comp, they have denied me

[Chemar]

Originally Posted by jrosiebd

hi! i was diagnoised with rsd of my left arm in august 2012, after trigger thumb surgery april 2, took 4 doctors and 5 mths to see that i have it, now it has spread to my right arm, neck, left leg and foot, i now go to a pain clinic, on morphine 30 mg 3 times a day. and 15 mg for break thru pain and gabapentin 600 mg 5 times aday, i hate the morphine i have begged the doctor to give me something else, she insist its the only thing that will help me, can someone tell me what else would help? also been trying get my workers comp, they have denied me

Hi and welcome
I think you have accidentally posted on the MS forum instead of RSD
Here is the RSD forum http://neurotalk.psychcentral.com/forum21.html

[Tammey]

No new updates from the docs yet. I have the disk of my mri, so I can take it to an MS Neuro for review if I need to. Hope your stuff is going well.



Tam

[NurseNancy]

hi katherine,
i don't know where you live but it sounds like you need a new neuro; and or a pcp that will listen to you and take you seriously.

you sound very symptomatic and it sounds like you're having periods of separate attacks. you need diagnosis and tx, imho. please get another opinion.

you're your own best advocate. don't give up and don't listen to drs who don't listen to you. keep us posted when you can.

[paleon183]

Hi I'm paleon183 and I live in London UK

[Tammey]

Originally Posted by paleon183

Hi I'm paleon183 and I live in London UK

Hi! I have many friends who live in the UK and Ireland...what brought you to this forum?



Tammey

[Erika]

Hello paleon183,

Welcome to our supportive community. Hope that we can help with what brought you here .

With love, Erika