Finally a date tomorrow with my Dr(kinda long)

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lostspirt
Regular Member


Date Joined Mar 2010
Total Posts : 22
   Posted 5/3/2010 12:40 PM (GMT -7)   
 NO EXCUSES THIS TIME!!
 I am hopeful(kinda) but also very nervous and feeling a bit overwhelmed,because I wonder if my Dr too after rambling off my symptoms will feel frustrated !!
  I have been keeping a pain journal,as well as a emotional roller coaster journal!!
  I have many questions,and after doing lots of research and reading here at Hw,I feel that I can advocate pretty well for myself. I do
 trust this dr and he knows me well...also knows what an awful experience I had with the Rheumy,,because he did call!
 My problem is will I be off base with some of my requests. Like I want to have an Mri of my my hip,lower back and groin. I had an X-ray of my leg. smhair  HUH!! My pain that is 24/7 is in those areas,and I feel like its deep muscle pain..not joint pain. The rheumy as she was doing her touch me all over exam,and me not in the least feeling  comfortable,nor not knowing what the hell she was even doing,did not once stop to ask me :"why do you think you have pain there ,maybe from an injury etc, or some kind of questions. If she had,I could have easily given her an explanation . I do have shoulder pain( a little) but possibly the pain is from the surgery I had on it a few years ago for a torn rotator cuff,arthritis and bursitis,that I am sure is still there. I also have pretty bad tinnitus in my elbow,been treated but it still comes and goes. Just not a good experience at all!!
  I know that I have Sjogerns (have thought that for many years) but wonder if I should ask to see a dermatologist, I had a basel cell carsoma taken from under my eye a few years back. Now I suffer from skin rashes that tend to itch,and hives at least 3 times a week. also I barely have any saliva,and drink a lot of water!!,can't even lick a stamp!!All the typical symptoms,I already see an eye dr for dry eye syndrome. Maybe my internist does know how to treat Sjogerns..so maybe does anyone think I am off base asking to see a dermatologist!! What do others think??
I also have been seeing a p-doc for quite a few years, after a tragic incident that has me now having severe PTSD. I do not want to see this head dr anymore,because I do not feel he will work with my internist with the meds,so I want my internist to take over prescribing meds. Is this kosher LOL??
 I also would like to try going to a pain clinic. can't hurt to try. think my dr would agree.. because I am a pain,and have so many symptoms that probably will frustrate him. So sending me out may be just the relief he may need LOL tongue
 Then there are the meds,,which cocktail will help me. Its the side effects that bother me the most,and if any med saids one of the side effects  is Weight gain,,,no friggin way I will take that med. I  have gained 40 or so lbs,since april of 09 after being diagnosed with COPD and mitral valve prolapse. I am also a recovering anoxic,and never have been above 116 lbs,except when I was preggers! So Depression has hit me hard on this tpoic..I can not see a neurologist because medicare will not pay,unless I have diabetes. So  I Feel like I may beg and maybe become a bit aggressive or cry cause i am not really the aggressive type!! if he does not help out maybe with some sort of diet pill,OR SOMETHING..I am afraid that I will go to Gnc and buy some sort of diet pill. I can't exercise, and may be put back on preisdone  for the Copd,,,which I will refuse..thisTopic is a very sore spot for me!!
  I now have been dieting but not with much weight loss!! age, hormones, and sitting on my butt day in and day out!!!!Have no frigging way to approach the dr with this!! ANY SUGGESTIONS?? I am sure the pain clinic offers physical therapy,so maybe if I go they can tell me what sort of exercise I can do...though my problem with this, they will probably tell me do do some sort of weight baring and streching exersises.When I want to do fast pace exercise !! Yep you all probably think I am one hard headed woman!
 
  And then there is the Lupus,first test positive,second false/positive. Have no idea what all this means,I read that if you had a positive ANA Test once you have Lupus,also that your body fluctuates daily. Don't have a clue as to what that really means. I just want to know if I have Lupus,if there are other tests??
 So so much to take in for one dr ..I just want  my life back or some part of it!! I know it takes time and I have plenty of that,to figure out what is going on. But it can't be easy when the patient has all sorts of symptoms and some new ones keep popping up! 
 I really have no idea how to approach my dr,and if I am jumping the gun,or just totally off base.
 I have made it easy for him by printing out all my symptoms,
and for his enjoyment some easy reading as to how it feels living in a chronic pain garbage pail. I hope he reads what I wrote,,because I think drs really do not fully understand our daily experience.
 SO ANY SUGGESTIONS AS TO WHAT I AM DOING RIGHT AND WHAT I AM DOING WRONG AND PLEASE BE HONEST AS I feel lke a mad person!!
 THANKS IF YOU GOT THIS FAR
 
 Lostspirit(LEE)

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 5/3/2010 3:13 PM (GMT -7)   
Lee, I feel your pain and  confusion. It is very difficult when you have a multitude of
differant symptoms and not sure what is really going on. It is frustrating not knowing.
I know you want answers.
 
Doctors tend to take things more slowly than we want. The testing can be long and
tiresome. Results vary and that adds to the confusion. A MRI is more definative and can
show pinched nerves, bad discs, joints ect.. but bloodwork can keep a doctor "guessing"
for awhile.
 
It is good that you ask questions of your doctor and keep a journal. I do the same and
I think my doctor knowing I'm proactive takes more time explaining things to me.
Try to be patient, believe me I've been there and in time things will get sorted out.
 
If you feel you are not getting what you need from your doctor, you need to be direct
and ask.  My rheumy is a good doctor but I had to go through a couple that weren't.
 
I found my rheumy through a referral from my PCP. All my other specialists were reffered
from my rheumy.
 
A doctors job is to listen to his patient. If he can not listen, he is not a good doctor.
As for your question about Lupus, autoimmune diseases are sometimes very hard
to diagnose. Antibodies can wax and wane making it very difficult. With Lupus there
are many tests that should be given and there is standard criteria that must be met.
 
Good luck Lee
 
Hugs, Robin
 
 


Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements
 
 

Post Edited (crazykitty) : 5/3/2010 4:26:10 PM (GMT-6)

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