Still loosing my mind..... | Arthritis Information

Well my appt. with the Rheumy didn't go as well as expected. I can't believe I've waited 8 months to see one that just didn't seem to listen and everytime I started to explain she would cut me off with another question & before that was finished she was on to another one.....grrrrr so to say the least I'm frustrated & left the office in tears.

She said she doesn't think I have any inflamation in my joints and kept asking if I had hurt my arms or done something that was tramatic to them & after my "no" answers to all of them she said wear a brace. Then she said she doesn't think I have PMR because I don't have inflamation and I'm not old enough...hahaha....but was leaning toward OA....I'm not even sure she even knows all of my symptoms!!!!! I told her that I gained 25 lbs very quickly & for no apparent reason...I'm now 140 lbs..she told me to go on a diet & get more excersize...well geee if my knees would co-operate better, I would do more, not to mention that my feet hurt after walking for lengthy periods of time & I'm sooooo exhausted most of the time that even trying to go to work is a huge chore. She asked me what I did for excersize, so I told her that go curling twice a week & play guitar to keep my fingers & arms limber & that I love to dance......she had no idea what curling was, didn't even comment on the guitar and appeared to be in shock that my hubby & I just like to dance at home (when my body will allow). I don't think she even heard me when I said that I just woke up one morning like this....it was not a gradual thing!

When we got home last night we researched OA...my hubby & I agree that it JUST ISN'T ME!

Anyway, now I just have to have more tests, xrays & go back in a month!

There was a lot more but my memory has pulled a blank, guess I'm a little overwhelmed & disappointed. Again, any information would be much appreciated. I have another Rheumy appointment in April with someone different, maybe I should keep that one???? I guess I'm allowed a second opinion.

Thanks again for listening to me blabber!

lab n newf

Yes, go to see the other Rheumy and this time stand your ground. Remember, if you took your car to a car mechanic and he was useless, you would take the car elswhere.

Keep a diary from now on until the appointment. Write down all the questions you have and take the paper with you.

Visit www.pmr-gca-northeast.org.uk and download the British Society of Rheumatologists Guidelines in the disagnosis and treatment of PMR issued June 2009 and take a copy for the |Rheumy

You can have pmr without a high ESR or CRP marker. They are just guidelines - if they give you a dose of 15 to 20mg and it works within a few days - you have PMR.

Do not give up - its your body and you know how ill you are feeling.

This website has a lively forum http://experience.patient.co.uk/ all pmr and gca sufferers who ask the daft questions and get the answers,

Keep on smiling and dancing as much as you can.
Awe thanks mrs UK! Much appreciated. I seem to be having difficulties getting into the website pmr-gca..... it's telling me the website is not found. I have tried going into the British Society of Rh but it's looking for login information however I was able to get into Fibromyalgia site and tried doing a search for PMR from there but unsucessful. Help!I think I got it! Google search is wonderful... :)lab n newf

google is good and I hope the paper is of use to you.

my photo is on that website - no you have to guess, but I am on 'overdraft' time, three score years plus ten and the overdraft.

Ask if you want more info - someone of this site and t'other one always are able to help.

Good for you to perserve.

Hello Mrs UK, well I found the website for the British Society, but I can't locate the PMR site with guidelines. Can you please check that www.. that you sent me as it is telling me that the page doesn't exist. I would really like to read that paper you are referring too. sorry to be a pain...lol

Thank you

Can you send me your email address and I will download the paper and forwarded it onto you as an attachment.

pmrgcafightersne@googlemail.com - put in subject heading for attn of mrs UK.
I have looked at the requisition the Rheumy gave me for having my blood test... 9 vials later, I wondered if I was going to have any blood left...lol

I really don't read these very well but I can tell you what some of the tests are:

HbA1C

TSH

Creatinine (eGFR)

ALT

Alk. Phosphatase

Vitamin B12

Ferritin

Urinalysis (Chemical)

CBC

ESR

CRP

AST

free T3, free T4 with some other writing I can't read

Ca, P PTH

ANA, antitsDNA,antiENA, C3cy????

There are a couple others but I sure can't read them.

Does anyone know what on earth some of these things are & maybe what they mean?

I have had lots of blood work before but a lot of these have never been on there. Also I am supposed to be booked in to have a bone scan????Anyone ever had that & if so whats involved?

Also, I have been stuffed up for a long time but it feels like they are dry, does that sound familiar? Everyday there seems to be something new.

Thanks again to all

How old are you anyway?

ESR is your SED rate and if it is elevated it could be PMR.

You really ought to try prednisone (20-30mg) for a few days and see if the pain goes away. That could mean you do have PMR. Demand a prescription!! pred is very cheap.

Lab n Newf,

My D.O. (Dr. of osteopathy-a GP) sent me for a bone scan last year when he had no idea what I could have. It was done in a hospital, and they put you on a table and this big machine that scans your body moves over you, or maybe the table moves, can't remember exactly. It takes awhile, like an hour or two. It came back negative (what was negative? What were they looking for?), so he still didn't know. Then he asked that I go to the Rhuemy, who, after a couple of years of this, finally decided what I had was "consistent" with PMR and gave me prednisone. NOw I am chubby, but feeling much better.

Did you do a blood test--there is a "sedimentation" marker that is I think widely accepted as being a good indicator of PMR as inflammation symptology may not show up in X-ray or even MRI. The blood results however are widely accepted. How old are you anyway? OMG that is me story too, not the part about the Doctor, Mine is great, the one time I saw her, I went there thinking I had fibromyalgia, and they took blood, called me back and said my inflammation was 4 times what it should be. She is giving me prednisone and I am supposed to call her back in 5 days to tell her whether or not it helped..........
"See Family ! My Pain is real, and not all because I am being lazy"..............I may be being a little fatigued because of the pain.
The part about the 25 lbs overnight, the part about this hitting me all at once. One morning I woke up and my inner knees felt like someone hit me with a hammer. Then that kept happening and still does, but my fingers started feeling tingly and the next morning the two middle fingers felt like someone hit them with a hammer. It was SOOOOO MUCH PAIN. I was really glad to get a possible diagnosis of PMR, I thought I was just still in the depression I have been in for the past year....I finally found meds that make me feel human and not all depressed, then this happens.
That is cool you and your husband love to dance.....
Well this is the first time I got on this forum and yours is the first post I read.
it is good to know you.

Hello all! Well I'm sorry for getting back here for a while & I do appreciate all your postings and personal emails.

I turned 53 yesterday...wooohooo! The only good thing about that Rheumy in Toronto was that I got my hands on my results....she didn't say anything to me except, get excersizing, & due to low vitamin D result, she wants me on 1000 u per day & after listening to her ramble about the lack of excersize for 20 mins, I finally asked her if she had a diagnosos???? GRRRRRRR, all she said was I'm siding with Fibromyalgia, which she doesn't treat & told me to go back to my family doctor. That was That & so long.

I went back to my GP, & she didn't say much either but decided to try me on Amitriptyline, starting with 10 mg for one week then increasing by 1 pill until I was up to 4 a night. Needless to say after 2 weeks absolutely nothing was happening so in the interim I made an appt with my eye doc as the blurriness was driving me absolutely crazy. I told him my long winded story & he jumped off his seat & said "D" you must go on my website & look up Dr. Hui, you must go see him....I know he will help you............sooooooo I immediately looked up Dr. Hui's website, read all his articles, videos, television interviews etc......lucky for me they were able to get me in April 14th......awe A NEW HAS BEGUN!

First of all Dr. Hui's main office is in Toronto but travels to Barrie twice a week to see northern patients there. He is a GP but brings eastern & western medicines together.

After my visit with my GP, I told her that I was going to see Dr. Hui, she wished me all the best & arranged for me to have all my result papers ready to take.

My appt was at 3:00 pm at which time I taken in by Dr. Hui's med assistant which gave me the once over, looked at all my papers & asked if the Toronto doctor addressed & discussed with my the Autoimmune report..........I said NO SHE DIDN'T & why do you ask? His response was...well it indicates that your body is attacking itself & I will discuss all of your results with Dr. Hui before you go in to see him.

Anyway by 3:30 I met with the master!!!! He was absolutely amazing...certainly a little different doc appt. than any I had ever been too but was very refreshing. He was from Hong Kong (a little hard to understand at times) but took every symptom & addressed every single one of them ON PAPER. He said that even though these test indicated Lupus amoungst Fibro, IT ALL BOILS DOWN TO VIRAL INFECTIONS WHICH HE TREATS PRETTY MUCH THE SAME. There is some kind of foreign soldier hiding internally & attacking my body.

My adrenal glands are exhuasted & not functioning which in turn is not sending the proper messages to the petuatary gland which is not talking to the thyroid, so Chronic fatigue among a ton of other symptoms are the result.

He also did an unusual eye test with light....he was so surprised he called in his assistant to see the findings as they don't see someone with the eye results like mine. He even had his assistant & myself look into his eyes to watch the difference. My pupils did not react properly to light, infact they tried opening & closing constantly but the iris couldn't keep the pupil closed. Even though I didn't understand a lot of these things, it sure meant a lot to him....again...total fatigue, blurred vision, etc.... called Abnormal pupil reflex to light.

Finally at 5:30 pm, he told me to get off the Amitriptyline immediately, take one tonight & through the rest in the garbage as these will eventually make me worse & cause all sorts of problems. He gave me a prescription for HYDROCORTISONE, 10 mg in the morning, 10 mg at noon & 5 mg at dinner......upped my vitamin D intake to 6000 u perday (in liquid form), and started to explain about treatments that he would pretty much guarantee me freedom & cure from these diseases.

It's called HYDROGEN PEROXIDE INTERVENOUS THERAPY. He gave me the book to read called Medical Miracle by Dr. William Campbell Douglass 11. MD

I would need 10 treatments of them as well as another intervenous drip that would kill the foreign soldiers in my body and that would be 10 treatments as well. The unfortunate thing is none of it is covered by our government medical plan. Each IV session is 0.00 and they do these 3-4 days apart. The initial total would be ,600.00 and if all looks good a recommended 10 further treaments to make sure no relapse and of course that also depends on how my results turn out after the first 10.

Sorry for being so long winded but it's been over a year of searching for a doctor that would listen to me.

SOOOOO....her I am on the 4th day of Hydrocortisone & I had my first awesome sleep in a year, no throbing pains, clear head, and I can do the happy dance...lol I won't be able to start the IV's for a while but am sure looking forward to when I can.

It's amazing how that little adrenal gland can shut down so many parts of your body. I'm sure I'm missing a ton of stuff but please feel free to send me a message if you have any questions. Dr. Hui also gave me a number of website to visit: www.drhui.com

www.drlam.com www.rheumatic.org www.roadback.org

I haven't had enough time to read these yet but I hope this can give some interesting reads to some of you.

He also is going to do some more bloodwork, and saliva tests....etc

I don't know how to read my test results but I will give them to you & maybe you will know better than me.

My CRP IS 1.2

My ESR IS 13.

Rheumatoid factor <20.

C3 1.20

C4 0.26

25 hydroxy vitamin D 41.

Antinuclear AB. (ANA) Positive TITRE 1:160 PATTERN - Homogeneous pattern

So if anyone knows what these mean, please let me know.

Just to much info for my pea brain...lol

Thanks again all!!!! You sure are a wonderful group of blessed friends!

Donna