Communicating with my doctor, suggestions needed.?

Question

I am a disabled Vet. Very long story short is I have an unknown illness that causes pain in 50% of my body. I have a hard time communicating with my VA doctors because it takes 3 months to get follow up appointments. By the time a doctor has tried 2 or 3 things i get assigned a new doctor and have to start all over. I have memory problems and cant even remember what was discussed 3 months prior. Does anyone have a suggestion on how to keep records, communicate, and focus my doctor visits so that the next 8 years doesnt result in the same thing this past 8 years has. The same tests repeated over and over because the doctors change and i cant remember what theyve done. Mayby websites that can help? (best description of my illness is Thallamic Syndrome but its so rare and ive not had a stroke that it is unlikely)

Answer 1

Having someone accompany you to your visits and sitting in on them with you is a great idea. Let that person keep track of what is said and done. You can request copies of results of any tests performed. The tests shouldn't be repeated. You have a chart and all progress notes, treatment plans and test results/reports are in your chart. The doctor, whether the same one or a new one, should be reading your chart to see what has already transpired. (I presume you go to the same facility each time).

If you can indeed see another physician at a private office or clinic, do so. You will need to request that your medical records be faxed to a new doctor.

Thalamic syndrome (so named because it involves trauma to the thalamus) is a real headache for you, I'm certain. Are you affected by listening to music? Have you looked at the website for the National Orgnization for Rare Diseases? They may have helpful information for you.

Make sure your "helper" is involved in these steps so he/she can keep track of what's been done & what needs to be done. I wish you the best, the very best.

Answer 2

1

Answer 3

As a disabled veteran and someone who is suffering from chronic pain, you are in a very difficult position. In general, VA doctors do not like to treat chronic pain because (1) they do not want to set a precedent, (2) some have a hard time believing that the patient is really in that much pain, (3) they don't like to prescribe narcotics, and (4) the entire medical community is slowly but surely changing its views on pain management and prescribing controlled substances. To make matters worse, many VA doctors are inexerienced in this field and since you change doctors fairly often, you cannot develop the type of relationship necessary to get the proper treatment. The fact that your illness is undiagnosed also works against you since most VA doctors will feel very ill-at-ease treating an undiagnosed painful illness with controlled substances. Thalamic syndrome is a painful condition that cannot (to this day) be proved or disproved. all doctors, except pain management specialists and maybe certain neurologists, don't even want to deal with this. Most will believe that it is not real (factitious) or that you are malingering. This topic spills over into the discussion of addiction and how good addicts are at trying to obtain drugs. I do not want to appear as though I am accusing you of that since i don't know you. Since you say that you haven't had a stroke, then thalamic syndrome can almost be ruled out and most doctors will stop there. They will not be interested in spending money trying to figure out what's wrong. I suggest that you try to see a pain management specialist. Maybe that can help you. I doubt you'll get a referral so you may have to spend out of your own pocket. Once the pain management specialist diagnoses what's wrong and starts treating you, then, maybe you can go back to the VA for long term treatment (if the VA doctors accept the diagnosis). Good luck!!!

Answer 4

First, take someone with you to your appointments. I mean go in with you to see the doctor. Two sets of ears are always better than one. Have them take notes for you, so you can concentrate on what the doctor says. Get your complete medical records (I know---that sounds like a daunting task) but it will save you from having to repeat things over and over again.

I am so sorry you are having such a hard time. SO many veterans are. I think you all should have the BEST of everything. Medical care for Vets should be the BEST in the world. My father was in WWII.

Answer 5

sorry to hear of the difficulties you have had seeking medical assistance. it is definitely frustrating. why do you get re-assigned to new doctors all the time? that doesn't seem very efficient in general.
anyways, i would suggest that before you go and see a doctor you spend time writing down a list of questions/concerns that you wish to discuss. that way you can just work through your list when you have your appointment. before you go and see a new doctor, i would contact the office of the previous physician a nd have them fax over your old records to the new dr's office so that the new dr can see what has already been done for you. you should also be able to get a copy of your health records for yourself. that is not private information. it is info about yourself!
perhaps when you are in the dr's office you can either write down answers to your concerns/questions as the dr addresses them, or have the dr. do it for you.
also, another thought i just had is perhaps you could get a notebook to keep handy where you can write down concerns/thoughts/symptoms/questions as they arise.
hope this helps a bit and i hope you are able to find a physician that works with you to find some answers!

Answer 6

Keep a journal of your visits. Who they were with and when and what was discussed. Also, it would be helpful to keep a record of your meds and get a record of all the lab and x-rays, etc done. They should have all this in the med records which are probably electronic and can easily print them for you. Also, record in your journal questions for your doc since sometimes you think of them and then forget when your at your appt. The VA system sucks but you can't knock free healthcare.

Answer 7

You do not have to receive your health care from the VA!

You can choose to have a private outside physician treat you.
You just cannot see both doctors.

My father, who is also a vet, was on 22 meds. prescribed by VA doctors. He was in and out of the hospital repeatedly until the meds. were reduced down to 3. He hasn't been in the hospital since.

If I were you, I would find and choose another physician.

Good luck to you.

Answer 8

Keep a copy of your record ever time you go to the doctor. It is your right to have a copy, then give to new doctor. If you go to the same clinic every time they should also have your file from before.

Answer 9

sounds like the beurocrats are screwing you good! the american medical system needs fixing! they simply do not care about veterans! you need to save all your information on a computer, and keep track of all appts! next time you see these medical fools, tell them you are slightly forgetful, and also ask them!! to give you better advice, or get a lawyer!

Answer 10

make a movie
keep a camera beside you
when you feel bad
record it
and take that to the doctor with you