SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
finally let my primary care provider go
About This Group:

This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

Founded by MrsAristotle on October 2, 2009
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finally let my primary care provider go

Hi everyone,

I went to my MDs office for an appointment and because there was traffic and I was 5 minutes late they wouldn't take me by appointment and I hate to wait as a walk in, which at this clinic generally means you're there all day and may not even get seen. I was in tears as this is the clinic that can't seem to fax over my referrals, is unavailable for other doctors to talk to, and that does not give faxes directly to my pcp but puts them in my chart, so my free prescription coverage program could not be finished without her signature and again I'm stuck paying $120 a month for this script.

I was going to ask her for a different pain medication, although she does suspect I'm a drug addict, but when I last went to the ER I got precribed 6 percocet, I on occasion for the past 2 weeks took one a day and that was all I needed! The vicodin doesn't do anything anymore and it seems pointless to take it every 4 hours, so to find this was amazing.

I got desperate and went to the ER today and actually had an OK experience, although I was there for 6 hours. The doctor gave me anotgher referral for a PCP and refilled all the scripts I needed, without thinking of me as a drug addict or psych case. All I had to do was be honest, upfront, and me. So I have a little hope.

I feared that if my old PCP did not give me this medication, which there was a good chance of, I would have to be homebound again because the pain was getting bad. But the past 4 days have been a miracle. I've been able to go outside, hang out with friends, and actually function. I am just seeing a glimpse of hope and feel like I can make it to my rheumatologist appointment on the 15th now.

Just wanted to post my hopeful outlook for once! Thank you all again so much for your support, I wouldn't have made it through last week without you guys!

Sara
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4 Comments
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1363810_tn?1279229271
Sara, so glad you could get some help, even if it was from the ER. Hang in there!
--faithHGL
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551343_tn?1350880995
Hi Sara I agree with FaithHGL hang in there, the 15th isnt that long now.....keep the faith oops no pun intended lol.

Keep FOCUSED on the road ahead and getting well.......we are here if you need us ok.

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765439_tn?1292964014
letting my primary go was the best decision ive ever made. my new primary who ive been seeing for a few months is the best doctor ive ever seen. shes ordered brain mris, when neurologists refused, is refferring me to a research clinic, sees problems in my blood work when the colmbia neuro endos didnt, is writing letters to my insurance so i  can get a 2nd opinion mri at their expense since my recent one wasnt read right...and she trusts me

my old one was horrible, but to his credit he diagnosed me with vit d deficiency...although even after going from 19 to 60 i feel no better?
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Avatar_f_tn
Thank you all for your support! Now I just have to find a good primary! With the few choices Medi-Cal offers. But if my SSI and Disability pass, I will have Medicare as well and have much more options. So there is hoope.I know the right one out there exists. My pediatrician even took me on probono for years when I was anorexic.

And to Binxy, I believe, or whom ever is having the anterior cervical neck dissection, good luck to you and internet hugs! I am sending warm wishes and good thoughts your way as I know you must be experiencing fear!
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