At the risk of being POLYANNA:
I am taking outpatient PN therapy at St Paul Hospital here in Dallas, Texas
I have a severe balance program and have had three bad falls.
I am so limited in my activities. Parkland is an outstanding burn clinic.
I do not see the inpatient clinic (Iraqui casualities) but I do see the Outpatients.
One Hispantic patient, burned from the top of his head to his toes.
The therapist import that his positive attitude keep thier spirits up.
I am blessed and will never complain!!

Hi. Well the ankle pain started from what I thought was an injury cause I was a heavy exerciser in my past. So I went to the ortho and he put me in an airboot but with the xrays and bone scan just showed a little inflammation. I still remember he was like 10 days and you will be back on the bike. Then my symptoms got worse and worse and if you recall I was in bed full days crying through vicodin from pain. Then the neuro's etc started and the rest is history.
JRCOO you have a good outlook. When I was at Cleveland Clinic I saw many horrible things and suffering and even on here many are so much worse. I feel bad about complaining I do cause I know there is always a lower bottom. It is just hard to face the day but need to work on accepting all my issues and as my one neuro said living with my pain and now this stupid eye issue. I have made progress cause I do my walks etc but I just want to be a young healthy person. One day at a time. Thanks always

Well, I admire the positive attitude for sure, especially in such terrible circumstances. My heart goes out to the man burned from head to toe. He is to be greatly admired for his attitude.

I do find though that a LOT of neurologists are not very sensitive to people suffering from pain. They seem to go arm in arm with Rheumatologists.

It is like, come back in 3-6-9 months. Meanwhile, let me give you an anti-depressant, or one of the other drugs that you have tried with no positive results. And, "Are you sure you are getting good sleep?" Or the one that really fries me: "You appear to be suffering from anxiety." Do you have something stressful going on in your life?" "You need to see a shrink." Or, how about, "just learn to live with the pain."

People in pain deserve to have something to give them relief. In my area (Dallas), there are pain management clinics-some good, others not so good. Probably most are at least trying to help people, who are struggling to have a life, despite the hand that has been dealt them.

In Daniella's case, I think that she has been suffering from pain that someone should be finding answers for NOW. This has gone on way too long. And the eye problem that goes on and on and on? Well gee, I would be anxious too...

Cathie

Is that I know someone who had terrible ankle pain (a young woman in her early twenties, I worked with). She also has the genetic problem--Marfan's syndrome. Well, she sprained her ankle, and in reality the doctors minimized her, like they did to you, Daniella. She, unlike her mother who is also Marfan's has less other physiological signs (aorta etc). Marfan's females are often not diagnosed, since they don't "show" the signs like the males.
http://en.wikipedia.org/wiki/Marfan_syndrome
The only reason she knew she had it was that her Mom tested all the kids.
Otherwise she could have gone a LONG time before anything showed up, if it ever did!

What ultimately happened was that a whole tendon in her ankle dissolved away.
She had to have surgery to reconstruct one. Marfan's patients have problems with collagen formation, and combined with the damage from the sprain, that tendon just died and was reabsorbed. (this took about 3 yrs).
Her surgery was successful.

Thank you both. I find docs in general to be uncaring. I feel that I have been to so many docs and so many pain clinics at good places like Cleveland Clini and Ucla but only to feel let down. I am going to look at that website Mrs D thanks. I guess for me I have to wonder when one says enough doc apts and just accepts what is. You know I went to the eye doc 15 times in 5 months with 5 docs I think for what?Nothing but getting worse. This is the same for the leg at one point with all there tests though needed. As for pain control I seem to not respond to meds. Like Cymbalta for ex I was on for the longest and even when I went off no withdrawl or anything. Neurontin was a hard drug for me and did no pain relief. So then the docs give up and shove me off to the next person they dream up. I bet they get a referral fee. I am joking but it almost seems like it.
I give everyone here so much credit. You research and research and keep fighting. Oh yea I am trying to spend time learning on the rsd forum too since though I have pn they think my pain is the rsd. I am also working on my positive outlook and being kinder to my mom and not talking pain talk so much. We were shopping online by phone together. Nothing like a little shopping to fix the mood. Thanks always

Daniella:

Do you have copies of all of the labs that have been run on you? If not, can you call and ask for copies, or fax doctors and request copies? Maybe if you put these in order on LizaJane's chart, the next doctor you see will be able to see something others have missed.

One other thing. I had a copy of a letter dictating my history from a Rheumatologist early in this illness. It was extremely detailed and helped other doctors I saw even quite some time later. So far, I have not had anyone else go into such thorough detail as he did.

Do you have any copies of letters dictating your history from doctors you have seen?
Cathie

Yes I have every copy of every test and written report in a binder organized. Most docs don't even look through it. I had one pain doc who didn't look at all even. Thanks again

A suggestion on records - I have several very different but important issues - that require different specialists.... what I've found is if I take a prepared two page medical history on my first visit (I just keep on my computer and update) - and just bullet summary of "current issues" (your reported symtoms), and then elaborate only in the area I'm going to see them in this section - then list "current illnesses" (those you have been diagnosed with and when), "surgureies (list and when done)", "past medical illnessess", "social history", and brief "family medical history" - I save myself a great deal of time..,. (as a new paitent they should ask you all this - they usually just dictate mine directly to my chart) -and while I do have all my records in binders, there are way too many and types for a specialist to look over... I'll therefore take only a few what I feel are relevant copies for the specilaist with me to the appt... and yes, I keep the spreadsheets updated too - but take them only the page (s) that may apply.... if they want to see any other tests they ask me- and I get them the copies I have in the binders at home and send to them...

The more conditions you present with - the more complicated you seem to be - the more work it means for them - and unfortuantely "too complicated" (too much work translation) for most docs to either want or have the time to handle....

On finding a GP - suggest talking with them first - they should be the gatekeeper and be willing to take on a complicated patient - they are crucial - so if the first few dont seem willing to spend time (and ask them up front) I suggest going elsewhere until you can find one that will be willing to oversee all your care.....

Hang in there

excellant idea and advice

I agree good advice but easier said then done. Do you know that in hope of a good gp I have had 3 this year. All "loosers". One said she is not a pain doc,another made me worse by touching my pain area after I said no,one of the gp's I could of been dying and he would of blown it off. I do agree limiting the amount of paper I give them is a better idea. I scare them off just by my age and history right off the bat scares them.I am tired of wasting so much time and energy from doc to doc and having to educate them.What is the alternative though I guess Thanks again.