Please help I'm very confused

Discussion in 'Fibromyalgia Main Forum' started by Belinha, Sep 28, 2008.

  1. Belinha

    Belinha New Member

    Hy everyone! Happy Sunday, which I thought it was Monday so I proceeded to call Dr Salvato's office with my list of questions lol. I think I am losing it! Now that my husband and son are working on Galveston Island and don't come home every night I'm losing my sense of time and everything. Please try to understand me and straighten me out.
    1st visit with Dr. Salvato, 3 expensive tests were done. When I called for results and also got my copies the lyme was negative, the epstein-barr I am still confused about and the energy was positive. 25.4 she gave me atp-20 because she wants to bring me to a 30 at least.
    2nd visit with Dr. Salvato since I have no insurance she mentioned my fybromyalgia (Now I am totally confused as I went for CFSME bloodtests) and said we will do another expensive blood test when I can afford it. Prescribed some meds, no shots or treatment plan. Now I don't know if I can apply for ssdi if I am not sure what what my real diagnosis is. Meanwhile I keep getting worse less sleepy, more fatigued, more and more pain, and feel like my very well oiled brain is going out of whack. I want to cry, scream, or just plainly understand whether or not that was a diagnosis or what. I am ready to give up!

  2. jenn_c

    jenn_c New Member

    I am sorry you are having such a hard time of it. Unfortunatly I do not know much about CFSME. I have fibro. I do not know what state you are in, but maybe you can get some immediate help from the state. I would call your local SSDI dept and talk to them. Good luck. Jenn
  3. Janalynn

    Janalynn New Member

    Hi Belinha-
    I know nothing about the test you had done or the results -I have Fibro, so I am unfamiliar. Since you're calling tomorrow, I'd add that question to your list. Is this Dr. now saying you have Fibro?

    They do not always go hand in hand and there are not the same thing, but they sure can be had together. Many people here have both CFS and FMS.

    Just be honest and say you're confused. Tell them what you're trying to accomplish (applying for ssdi) and need to know what your dr. is stating as a diagnosis.

    DO NOT GIVE UP. We all want to scream and cry. If we all did it at the same time, I bet we would hear each other across state lines! =)

  4. kat0465

    kat0465 New Member

    DR salvato diagnosed me with both several years ago,She told me then she thinks cfids and fibro are the same disease. i did the shots and had to stop after a few weeks i was having some side effects. so she put me on atp drops , interferon, neurontin, and xanax. it took me a couple years, but she had me back to about 60 % better than i was before i found her.i got off all the meds, cause i thought i didnt need them, she is very far away from me , and im not a med taker. i worked at a Physically demanding job, had a hysterectomy 6 months ago, and now im back to square one with her. i can say not much new to be had as far as med wise after all these years so she started me back to all my old meds, except the atp cause it was ok, i got off the neurontin cause all it was doing was make me gain weight!!! so in Oct i go back for even more tests, and some heart tests too. dont know what she has up her sleeve next, but i am hoping she will do something for my Pain as that wasent addressed by the neurontin. i know it's confusing and difficult ,and no Insurance is Awful!! been there!!
    just tell her when you go back, to please go slow and even try & write stuff down or better yet take a little pocket tape recorder. i have to write it all down or i will forget just what she said 30 minutes later. also someone else has wrote on the posts how bad her staff is, and i find that thats really true, they tend to not look at charts to good and forget to give u things or do stuff that is on the chart.Just take it as slow as you need to when you go, dont let them rush you until you are satisfied you know whats goin on, she will be kind and understanding. her np, is great too, think her name is Carol if i remember, you may have better luck with her she seems to take more time with me, i know Salvato is really busy, she sees all kinda patients, even aids and she goes to hospice too or at least she used to.hope you have better luck next time, & remember i go back in Oct, so if u need any info on meds or any of her other protocols let me know ,{{Hugs}} Kat