Quote:
Originally Posted by BioBased
Oh mama, I know what you are feeling.
My PM doctor supposedly trained Dr. Chopra, but will not offer me much of anything Dr. Chopra green dot listed. So far I have gotten neurontin. It doesn't cut it.
After waiting months to see this doctor he told me to "doctor shop" to find someone to give me the bisphosphonate infusions. Someone "might" give them to me.
I feel as if none of the people know squat about CRPS, because if they did they would know a CRPSer likely does not have the wherewithal or the energy of the unafflicted to be hunting down doctors. I have limited energy.
I believe that because there are no set guidelines for treating CRPS the doctors are afraid to be "experimental," which often translates into no treatment.
It infuriates me to read what others got or are getting here for treatment, when I have gotten literally nothing, despite seeing many doctors. One doctor told me he might give me lidocaine or topical ketamine. "Maybe in a couple weeks." I never went back. I needed help right then, not in a couple weeks and certainly not "maybe." Perhaps if he had helped me cut the pain then I could have made better progress.
Mama, I was warned never to google by multiple doctors. "Never." You have to wonder why researching your illness could be wrong.
What has helped me the most is the LDN I am using to self-treat. And before anyone gets upset about it, let me add this, I contacted one of the big CRPS doctors by email who did not admonish me or lecture me for going down this path when he responded. Although, he did offer to see me in his office. If I had the wherewithal I would go.
PT is another positive. Epsom salts baths. DMSO. NOW MSM and arnica cream.
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Bio Based,
Thanks much for your reply. As if the illness is not frustrating enough, we have to add problems with access to doctors that are willing to treat the illness in a creative, individualized way. There are no drugs approved for this illness so anything that is done does not have solid research to back up efficacy. Nerve blocks are known to not be very effective, except for people diagnosed very early, yet they widely used and paid for by insurance. SCS units shown to be no more effective than ketamine infusions and are far more invasive yet they are being pushed like the only option. I've been to Southwestern Medical School, one of the supposed best PM doctors in Dallas and now this yo-yo in east Texas. Most of these people's worst nightmares seems to be an informed patient that knows there are other options. Excuse the rant.
No judgement on the LDN. Chopra states in his video that it can be purchased in India, with no script, at a low cost and it can. The problem is the mg. I'm glad you found someone qualified to help.
I've been in PT for months and it has helped. On Lyrica but not working well enough to justify the side effects. Last 2 docs have agreed on this. I'm taking magnesium as suggested by Chopra. Epsom salt OK but can tell much difference.
Thanks for the support and suggestions. I guess we just keep trying. Here's to a good tomorrow!
~mac