Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Waiting

Hi Sonia,

I haven't read the rest of the posts so I may be repeating.

Just start making a list of your health history and all of your symptoms. Dates that different symptoms started. Have your family health history written down also. Plus, write down all of your questions. I have to make lists or I get there and forget everything. Actually, I keep it on the computer. I keep an updated Med list and Allergy list that I can print off for appts. and on the big pages just write "See List" and put it with the forms.

My first visit (which has been a day or two or decade or 4 ):o)
They did tons of blood work and a urinalysis. He did a complete physical checking all of my joints and watching me walk. He did take some x-rays on my back, hips and knees. He made a follow-up appt. for when he had all of the labs back and had looked at all of the x-rays.

If this is your first rheumatologist visit, I would just feel like someone finally is doing something getting you to a specialist. When they call with your appt., ask to be put on a "call list" if they have a cancellation earlier.

Hope it's not too long.

Blessings
Possi

Sonia,
If your labs/bloodwork don't show anything remarkable there is a heat imaging test that some doctors have like Dr. Mercola and it shows the degree of inflammation in the body by color I think. I wonder if something like this would be good for people that don't have bad labs.???
I hope you get a caring doctor, but have you tried the NSD, a change in my diet has helped me way more than the big expensive RA meds ( I tried a few biologics). The RA meds I have tried make me really anemic and so tired and I still have joint pain.When I take a break from the meds my anaemia goes away. It might be worth it if my joint pain went away completely, but the only thing that really makes me feel better is changing what I eat.So,even though you cannot get to a doctor right away, do not be discouraged,in the meantime let thy food be thy medicine and thy medicine be thy food. I hope your pain goes away and I hope you start feeling better.

As far as your appt goes I think being honest about your pain and I think most doctors like to be the doctor and do not like it when a patient diagnosis themselves. When I have recieved dianosis for RA I hadn't heard of RA before and I probably sounded very childlike, but I think the dr appreciated my honesty and wanted to help me instead of me walking in telling them I think I have RA or AS etc. Tell them how the past week or months have been and how you were always fine but now the pain won't go away or comes at cerrtain times of the day, you know what I'm saying.
Take care.

Thanks for the reply valsmum,I totally understand where your coming from in terms of telling them their job,I will go in with an open mind and let them do their job,but if I feel like they are not taking me serious then I think I will put my foot down,I know the pain isn't in my head!

Wow, I've never heard of that, that sounds so cool! (or I mean hot! pun intended)

unless that's basically the bone density scan.

which, I agree was really eye opening.

where my pain was most severe is exactly where it lit up.

i just wish my doctor had me do it while in a flare.

i was feeling really good when i was finally sent

except for a severe case of costochondroitis at the breast bone (and it was so bright there that the radiologist kept having me turn to different positions because in his words "never seen that before.") and a mild case of Plantar fasciitis that also showed up.

i can only imagine what it would have looked like if my SI or neck were flaring at the time.

is it the nuclear bone scan?

or something else?

advice to all, if going for a nuclear bone scan, do it during a flare, so they can really see you glow!

Sue - This is the Thermography Scan that I have posted here on KA before. Useful diagnostic. Often used for horses, in fact, was first developed for horses then followed human use. You can google it up.

Had a thermographic scan done on my back several years ago now, very picturesque...!

Sue, I wish I could get one of these tests done too, for my si joints or pain in my lower back, I would like to know if it is endometriosis or srthritis. Dr Mercola's website sayd this test can pick up breast cancer and it is a safe test .

Sonia,
I totally agree with you about telling the dr that you have a lot of pain and its not in your head, I would be so mad and insulted if someone said that to me. I just noticed over the past few years that the doctors get mad if you tell them you have RA before they even check you out. I didn't do that but I have heard of others doing so. I got my diagnosis after one visit with the rheumy but I had bad labs and some visible swelling. One rheumy told me that I have had it for awhile. I had pain for years as a child and then grew out of it, I always wonder if it was JRA ???
Hope your apt goes well.

Sonia,
I hope you are getting some help now, if not get it quick, in a years time I went from needing one hip replaced to both, and my pelvic bone and other bones in the area are destroyed. Don't delay, sometimes it moves slowly and sometimes it just takes over.
Hang tight !

Thanks becky,nice name,the same name as my daughter only we spell it Rebekah,Bekah for short,I'm still waiting,the pain isn't so bad in my hips now,my both heels are still painful as is my shoulders,just hope I hear soon about my appointment.

Sonia,
I am sorry I haven't been on here, I can't stand sitting, and I'm getting really negative. For my jaw, shoulder, arm, and hand pain I take muscle relaxers, sometimes they work sometimes they don't. I think the only way to find real relief is to make these dr.s go with this pain for two months, that's it , and see what they will do for us in a five or more year constant flare up ! I've done two months when I was younger and made it through, so I think they can, and then say , ok, what would you do after a few years ? it's frustrating, but don't take no for an answer, or like I do, I don't let my husband let them say no. lol, keep faith that it will pass and you will get better. Good luck, love.