Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I don't get it!!!!!!!

Was to see my doctor hoping to finally get results. What a joke!!!!!!!

I have elevate liver enzymes.
CRP elevated
ESR elevated
Kidney stone right kidney
Bladder problems (severe fluid retention, fluid hesitation)
Bruises on my arms that just pop out
Skin rashes
Hands and faces visibly swollen
Cholesterol out of whack
GERD inflamation seen, through biopsy
Now on Gluten Free diet
Have IBS diagnosed again by GASTRO

Family doctor tells me I am in no pain!!!!!!! - No chance to tell him where I am paining

Told me to go home loose weight - I eat barely 900 calories a day. I exercise as much as I can, when I am not in pain, and so not to cause more pain. He wants me to get my cholesterol down, and gives me a sheet of foods I am to eat, and three guarters I can't eat because of allergies. ;(

No referral to Urologist - No referral to Encrinologist - no referral to new Rheumy - No new prescriptions because I wasn't sure how much I had.

Just before left he said, he didn't need to see me until after January.

This is absolutely driving me crazy. I am so upset I don't know anymore what to do.

Pain

1- wrist burning
2- ankles burning
3- left arm I can barely lift it because of pain
4- jaw pain
5- lower back, upper back neck area
6- right and left rib pain - only to touch
7- GERDS
8- everything I eat causes pain
9- knee pain
10- hands

I am not going on. I don't care anymore.

Hugs

Gerri

Gerri
I am so sorry to hear what you are going thru. I have come to the conclusion that those of us with AS are thought to be hypocondreacts by doctors. I think there is so much they don't know about AS and other health issuses that come with it. sometimes I am like you I feel like just giving up but please don't do that. I know all to well what it is like to go to the docs and they tell me since they cannot find a cause for what is causing me pain that there is nothing they can do. I have found that the younger docs are the best to go to because they have not gotten into a cycle of seeing and treating the same things and they seem to think outside the box more.

Does your insurance make you have to get a referral to specialist? My insurance allows me to go to whoever I want.

What medications are you on for all of your pain?
Are you on enbrel or any of those medications? Some of your symptoms sounds like you are on some sort of steroid with the Bladder problems (severe fluid retention, fluid hesitation), Hands and faces visibly swollen. You said that this was from your family doc but do you have a rheumy? Your burning sounds more like nerve problem. I have burning feet and legs and was told it was neurophothy. I don't take anything for it cause the meds that they had put me on made me suicidal so I just have learned how to deal with the pain as much as possible. I take loritab however its not for the neuropothy because it does not help nerve pain at all. I use the loritab for my AS.

You said your ESR was elevated.. What is it elevated to? I have learned that the ESR in AS patients can be not very reliable becasue it is a number for the over all body not just in different areas of the body. I am sure some else could expain it a lot better than I can and you may already know that becasue you always seem to be on top of all of this stuff..


You said Bruises on my arms that just pop out...I have read that people with HLA-B27 gene bruise very easy. Are you HLA-B27?
I am having the same problem with pain after I eat anything. I am having a ct scan on Tuesday.

Please know that there are a lot of us in the same boat and we can be supportive of eachother and know you are not alone. I will be praying for you.

BIG HUGS
Raquel

Find a new Dr. ASAP!!!!!! Don't let this doctor be your deciding factor. We all know we have to lose weight. I drop pounds without trying and the doctor tells me to stop. I don't know why I'm losing weight. However they are still trying to find out why. Your doctor sounds like he doesn't know what to do and is blaming you. Do it without referrals even if your insurance doesn't do that. Once you find a doctor that will work for you it will work out. Do it today don't wait.

I'm sorry if I sounded harsh. I can't stand incompendent doctors. I had one when I was growing up and maybe I wouldn't have progressed as I did if he would have done his job. That same doctor told my mother my brother was a hypochondriac and he had Luekodystrophy. He is now 33 and in a wheelchair and has multiple heath issues because it wasn't treated in time. So I really do apologize

I have to be referred to specialist.

No Pain medications EVER, allergic to sulfa, sulfites, sulfates, sulfur and all derivatives.

Doctor said ESR, and CRP were high. The numbers where flashing red on computer saying they are high. Doctor would not tell me the figures.

Not on steroids - had this problem before when my last Urologist diagnosed me with MS. Neurologist said MS not showing in lumbar tap.

I am HLA B27 positive. Diagnosed with AS by ex-doctor.

Hugs

Gerri

Patty, here in Ontario Canada we have a really bad shortage of doctors. If you have a doctor you have no choise but keep them.

Hugs

Gerri

We can always fire them if we want.

I am so sorry that you have been a complicated case.

I have no real advice for you.

Keep your chin up.

Ali

Gerr, hon, a suggestion for you, make another appointment with him. Print off the list of test results and the list of pain areas and take it to the appointment. Tell him you know he said not until January, but you didn't feel you had been clear in this last appointment, so you typed it all out for him to read. Highlight (in pink or with a star) the 3 things on each list that concern you most.

Include on the list that you eat less than 900 calories a day now, so what does he suggest you do to lose more weight.

I fear you may need to be persistent with him. Take hubby with you if you think he'll listen more to him. And let him know that you are near the breaking point and don't want to go on anymore.

I'm so sorry this jerk is so disrespectful to you. I wish there were more I could do than just type this response.

Warm hugs,

Hi Gerri
the only pain that we don't seem to share is the jaw pain.. I don't have that..
but none of the doctors I have would say that I don't have pain. Their usual question is do I know how much pain that I should be feeling..
I think that if it is possible you should see another doctor..

Gerri. I am SO sorry that you are being treated this way. How a doctor can be that blind and insensitive is beyond me. What really infuriates me is that you are getting the same response/treatment my wife did when she first started having really bad back pain--and I think this is the way many women get treated. She went to numerous doctors--more than 6 I think--and none really took her seriously. All but one of them gave her the same stock answer that I honestly believe bad male doctors automatically say to female patients who say they are in pain: "You just need to lose weight honey, that's the only problem you have. That will take pressure off your joints and make you feel better." Every single time, save one, that was the response, and it seemed some offered up that nugget without even looking at her chart, etc. Of course, for those who did bother to look at her file and read her history, that actually just made things worse because they saw that she had a history of depression and mental illness, which meant, of course, that her problems--say it with me now everyone--WERE ALL IN HER HEAD! Of course! Makes total sense. She hurts so bad she can barely stand up or walk, you can actually HEAR her some odd noises coming from the area of her lower back when she stands up (ie, clicks, etc., as if from joints "popping" or whatever), but hey, she's just a whacko so she must be imagining all this. It was just infuriating, and I was the one who kept pressuring her to see one doctor for another because, silly me, I believed that she eventually would get the right diagnosis if we just kept trying different specialists.

After seeing everything she went through, I feel so bad to hear that you are going through your own version of this h*** Gerri. I don't know how possible it is, and I am reluctant to say this because of what I just said about feeling guilty because I kept pressuring her to go to more doctors, but I think you really need to change doctors. If this was a specialist you had seen, I definitely would not just say "see another specialist," or "try again." However, because this is your primary care doctor and thus your gateway to any of the specialized care that you already know you need, I think you absolutely need to fire this fool and look for someone who is more compassionate and willing to actually listen to you. And firing him is what you would be doing--he works for you! Meaning, of course, that you don't have to take this kind of poor treatment.

In the meantime, I hope you at least feel better, and good luck coming up with some kind of plan to move forward from here. Please keep us informed.

Brad