SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
Good news with some ironic bad news, sorry for long post!!
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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Good news with some ironic bad news, sorry for long post!!

I saw my awlfull, or for the past 3 months alwfull, primary care physician for what will be the last appointment with her today, as I finally got fed up with Medi-Cal after 23.9 years and someone told me about the option to switch to Managed Medi-Cal, or Health Net (which supposedly covers all prescriptions and will cover my pain management Dr. which I am self-paying for right now). I didn't expect her to fulfill any of my requests, but she actually did. The usual probelm is the clinic, and her, don't ever follow through on their orders/refferals.

She ordered an MRI with contrast for my neck, and an MRI for my lower back. She previously reffered me to an orthepedist, whom I had to call myself to find out if they had received my info-which they hadn't, and they told me they cannot make appointments for patients until they have had a full back workup done-that way the doctor can see if you qualify for his time or not. I have been trying to get these MRIs for months and months, even going so far as going to the ER and saying I fell-and they didn't even do xrays! So my primary ordered them, I called to make an appointment, but of course because I have Medi-Cal, a TAR has to be submitted for these to be approved, and as my Medi-Cal ends Feb 28, they might not get approved in time, so I might have to go through the whole struggle to get these ordered again, but hopefully now with this new insurance, I'll be dealing with doctors that can actually help me...I hope. So I'm, making progress on ending the pain! I hope! Or at least I have progress in making hope!

Next, my chronic fatigue has worsened so badly these past few months, that I'm at the point were I can only stay out of the house for a maximum of 6 hours, 8 hours means a bad day, take naps or just lie down and stare blankly in my car when I get to my destination but am too tired to get out, so I decide to just nap for a while, take 4 hours naps during the day, often go to bed at 5pm, strive to be home by 3pm so I can lie down on the couch with heating pad and computer, etc. All things not normal for a 23 year old. And with my mom cutting off all finances and me looking at having to work again, I need help. So I asked her to prescribe me Provagil, made for chronic fatugue. I'm already on Adderall (adderrall), but that does nothing. She did prescribe it to me, but after calling the pharmacy it's well over $400 at the minimum dose. So I finally have the prescription but now see i can't afford it. There's hope next month I'll be able to get my new doctor to write the same precsription and hope the insurance covers it. But I fear as well that I'll have the same problem I initially did with this-doctors don't want to give a stimulant to a 23 year old. My age.

I also found out while I was there that, although I had been talking to the refferal coordinator about this nearly every other day, and she said she was taking care of it, my GI doctor did not fax any notes stating I needed to be reffered to a doctor at UCSD to perform the colon resection. He did fax over my colonoscopy results, but that's it. When they called his clinic the request his notes be faxed, he stated that it was I who requested for the colon ressection. Bull crap I did. I won't vent or try to prove my self to you guys as this is already long, but my God, does a doctor blame his patients like that every time he fprgets to send his notes that he promissed to? So I'm hoping at least that refferal will go through before my Meedi-cal is up, because as long as I get in for an appointment, I can go off that same refferal but change insurances.

Lastly, I saw my pain management on Saturday and as I posted earlier last week, I was pretty sick and tired, so I made a bold request. I told her I needed a higher dosage and I wanted something long acting, as that has always worked for me better. I requested for Oxycodone 30mg ER, as that was similar to what she had me on at that time. She instead said we had to start out slow in the longer pills and gave me a script for Oxycontin 10 with 5 Oxycodone every 4 hours. I never wanted to use Oxycon tin, because as a nurse in Hospice, we always used MS contin, because it's known that it works better on pain than Oxycontin, and has less addicive tendencies. And being that I'm a drug addict in recovery, >4 years now, I have to be careful. The first day the pain was so much better, although I did use the prn Oxycodone. But I did feel definitely high which wwas a huge trigger and could feel myself obsessing over the next pill-addiction warning signs. Now although the pain is still better, its still not releif either. So I'm thinking of doing a wlk-in visit this week, but I don't know how to go about this or what to ask her as I'm afraid I'll look like a drug addict if I continue to say I'm in pain and need something stronger, or want to swicth brands. What would you do?

I'll stop my short story now as I think most of you have cut out by now :). I think I just gotta make it through the rest of February, then March offers a new chance, new doctor, visit with old rheumy, finally turning an even number so maybe better luck :). I'm sending you all warm thoughts and wishes and hope your lives are each going as smoothly as they can be at this time. Thanks for taking the time to read.

Sara
Tags: good news, bad news, Pain
4 Comments
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Avatar_f_tn
dear sara,

you have been through so much, i certainly hope there are brighter days ahead for you with the new docs, etc.

thanks for keeping us updated as things unfold for you.

blessings to you,
binx
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1168938_tn?1327157832
Hi Sara

Gosh there is so much going on for you at the moment, let's hope that your insurance and new doctors come through for you.
Keep going you are making progress :o) Slow progress but it's progress!

Hugs
Suz
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Avatar_f_tn
I officially got approved for food stamps today, so that's $200 a month I now can get from the government! I figured out, right now, with no medical or prescription fees, I can live off a budget of $2,000 without moving out of my current place. This means financial independence and freedom from mother. Now, I'm only $1,800 and still waiting on SSI and disability. Positive thoughts :)

Sara
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1168938_tn?1327157832
Hi
That's good news, I've been having positive thoughts and it seems they are helping :o)
I've been without my computer for a couple of days as I had a fault on phone line, glad to be back and to hear things are going in the right direction for you.
Hugs
Suz
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