Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group New and Not Diagnosed

Hi! I'm new to the board, and thought I might introduce myself! It all started about eight years ago, when I started having bad pains in my knees. I figured since I had been a runner for several years, and had already had surgery on one knee, that it was just a matter of time. I wound up having surgery on my left knee, which seemed to relieve the pain...for about eight weeks. I found that I was tired all the time, but figured it was the lack of endorphans since I had quit running. My orthopedic surgeon said he was unsure of what else he could do. When I told him I had been having pains in my hands and wrists, fatigue, and on and off sinus infections, he sent me to a rheumy. The rheumatologist was about 150 years old and told me that people my age (22 yrs at the time) didn't get RA. That was my first sign that I was at the wrong place. He did the typical blood tests and said that I had no indication of rheumatoid disease. He handed my a box full of Arthrotec, and sent me on my way.

After realizing that the Arthrotec did absolutely nothing for me, I went to a rheumatologists in NYC, who did a two hour interview and exam. I told him my history of my mother's mother having Lupus, my father's father having RA, and both my father and his brother having Raynoids. He told me that he was pretty sure that I had Lupus, and did several blood tests to confirm it. When the results were in, he told me that they were all negative, and that I was perfectly healthy.

Years went by, and I discovered I had a severe allergy to dust. This definitely explained the sinus infections, but could it cause the pain and fatigue I had been experiencing? A few more years past, and I found I had developed several more allergies. Went on several medications, and found that my pain had decreased considerably, but were still present. Could allergies be causing my immune system to attack my joints?

Soon after this, I became a police officer. The academy brought out pain in both knees, but I figured it was the running. After about a year on the job, I began to have lower back pain, shoulder pain, wrist pain, hand pain, elbow pain, and butt pain. I had an excuse for each pain...back, 16 pound duty belt; shoulders, driving 8 hrs a day; hands and wrists, typing and writing; butt, sitting in a car for 8 hrs a day. I went to a sports medicine doctor who found that I had carpel tunnels, arthrits in my neck (which was pinching a nerve), tendonitis in my shoulders, and scoliosis in my lower back. He thought it was strange for me to arthritis at the ripe old age of 31, and sent me to a rheumy.

Thr rhuemy tested and found I was HLA-B27 positive, but said I did not have Spondylitis. He told me that the B27 tissue type makes me prone to tendonitis, but was disease free. I left the office as happy as could be...I had a reason for all my pains, but no disease. Then, I went to the internet. As I wrote to others and read articles, I began to think that AS was a real posibility. I spoke with my doctor again...which resulted in an arguement. I guess he didn't think I had any right to question him! So...now I am on the look for a new rheumy...one who is willing to answer questions, and explain what's going on! Maybe even one that will be a little more aggressive with treatment! Right now, I am in PT and taking Vioxx, which seems to help, but nowhere near enough.

I am still fairly active...walking and my new thing is pilates. I used to do a lot of weight lifting, but those days are gone. I thank God that I am able to do these things, and pray that I find a good rheumy who can prevent me from getting any worse then I am.

God bless all of you how are suffering from this disease. I wish you all well, and look forward to helping those that I can! We are all lucky to have these message boards where we can go for help, to help others, or just vent. I truly belive that we are the only ones who know what this disease really is.

Take Care,
Liz

Hello New and not diagnosed,
I am the wife of a husband whom has AS, rhumethoid arth. osteoarthritis, DISH, and diabetics. My husband named Vaughn, has had his disease for 19 years. He went through the same thing that you are going through now. Doctors don't diagnose you, because most of them don't care. They are getting paid whether or not you sick or not.
Vaughn's disease was inherited, from Czechs, North American Indian, Vaughn had his disease his whole life but didn't show up to be progressed until he was in an accident at his job, with a head injury. Then all heck broke loose, he started having headaches , backaches, spasams, joint aches. He had five right knee surgies, one right thumb surgery, one right shoulder shoulder. 15 years of physical theraphy the Orthopedic Surgeon still said it was just normal since his job was driving around hundreds of miles a day taking care of Oil Wells for Chevron. The orthopedic surgeon, could have made the diagnosis, but he didn't . After all whom do you think was paying for all those surgeries. Yes, our health insurance. Finally in 1994 when we finally got a good Neurologist to make the diagnosis. He said, it was progressed AS. Fortunately, we finally got someone whom knew what it was. He also knew how to treat it. We tried the steroids, pain medicine, muscle relaxers and none seem to help. Finally,the hardest part was dealing with the actual diagnosis. Lots of people have AS but some of them don't get the the progressed AS. Vaughn and I have lived with this for 19 years and it seems to be a disease of the joints, back, knees, shoulders, and any place that you have joints with cartlidge. It destroys the soft tissure in the joints ....You can still live with the pain, it is a lot self control and a good attitude toward life in general.
My husband Vaughn has the best attitude of anyone I know, and he is living with his pain without pain medication. Just antiflamatory drug called Daypro 1200 mg, He has dealt with his disease with mind control. Now he has kidney stones, IBS, which he takes prilosec, and then he takes his high blood pressure medicine.
Don't give up, just keep knocking the doors down and you will soon get the answer to your questions.
Good Luck,
Popscook (Ann) AS support of friends and family

Liz,

Hi Welcome to KickAS, sounds like you've had the typical runaround. It happens far too often! One I feel needs to be addressed.

I think your family history and B27 status is pretty significant, and the pain problems in the knees shoulders etc are similar to my experiences. Often the peripheral arthritis shows first.

I think your Dr was half right this family of disease affects the insertions points of the tendons, ligaments etc. My rhemmy calls it enthesopathy, although I understand it is also called enthesitis.HLA B27 is also iplicated in lots of other conective tissue diseases.

After a similar story to you I was sent to see a great rhemmy, took her all of 2.5 minutes to come to a conclusion which were borne out by tests. Even so it has still been a fight to get proper pain medication, and away from NSAIDs which cause my bowel disease to really flare.

One of the most useful things I have foud is the Low/No Starch diet, it really does help heaps and for many years I used it to keep on top of the flares. It took me 3 weeks the first time to notice the relief and I've been on and off it since 1988.

The other thing to check out is the SpondyloArthropathy (SpA) which is the family AS belongs to. Many Dr.s are often quite ignorant of this disease. there is another member of the family called Undifferentiated AS or SpA which is where some bit not all signs of the disease exist. It was created for ladies as it was realised that many had a similar disease but just did n't make all the diagnostic criteria.

For a better understanding, if you are into medical papaers there's some good stuff written by a Dr Khan, who himself has AS I understand.

http://www.rheuma21st.com/archives/Enthesitis_Khan.htm

He has a number of excellent papers on the above site......

http://www.rheuma21st.com

Hang in their! Stretching certainly helps, I gave up weights years ago, had too many problems and running well, I love it but these days enough is enough. I managed a couple of beach runs on sand during a remission last year, been dreaming about it for a year. Felt wonderful!

Take Care,

Hope to hear from you on the progress with the diagnosis!

David

David-
Thanks for your response and the attached articles. I have actually already read them, and researched the other Spodylopathies. In fact, my research is what prompted the arguement between me and my Rheumy! He didn't like the fact that I was knowledgable. Anyway, I thought maybe I had misunderstood him, and questioned him about Undifferentiated Spondylitis. He said "no" that I had NO DISEASE, but still wanted to see me in six months to make sure. He told me that he treats several patients with AS and HLA-B27 positive patients that have no disease. I asked him why I had the changes in my spine, but he changed the subject. I think his ego has gotten the best of him. Anyway, is your Rheumy in the CT/ NY area? If so, let me know who she is.

Thanks again,
Liz

Thanks Ann for your reply. I know it seems to be the typical route for all, but I'm not so sure I am willing to just accept that. I would think that as a rheumatologist, you would be used to seeing people who are tired of getting no answer, and you might be a little more sympathetic to them. All the rheumy's seem to look at you and say, "Not my problem, take it up with your other doctor." Instead, they should be providing you with information...exercise routines, diets, preventative measures, etc. They should know by now that the person they send away today is the person who has arthritis, AS, etc tomorrow!

Thanks again,
Liz

to KICKAS.

Good to hear that you are looking for answers, the Doctor's I have experienced have never been forthcoming on information. That is why I found KICKAS. You will find answers to many of your questions here.

The rest of my post is my normal welcome information and is well worth a read.

You will find this site and the people on it very supportive, knowlegeable and experienced. One of the great aspects of the site is that people share experiences.

Have you been through the normal battering of tests, XRays, MRI, Catscan. Have you had a blood test done, HLA-B27 positive or negative, Rhuemtoid Factor, ESR and CRP readings.

Look around the site, there is a lot of useful information, the following are things you should look closely at.

The NSD No Starch Diet is well worth trying, many people here have had great success with the diet, some have managed to come off all medications on the diet. If the diet works for you, then that is got to be better than taking medications. Remember though that the diet does not work for all of us. If you are serious about trying the NSD, try starting with the 3 day Apple diet first, I think it is a system cleanesing/detox diet. As to the NSD, there are differing levels of the diet from strict NSD to LSD to Gluten Free. My suggestion is to try the strict NSD first and migrate down to the lower levels experimenting with various foods and there effects.
Here are some links. (just click on them)
https://www.kickas.org/as_dietary_primer.shtml
https://www.kickas.org/asfood.shtml
No Starch Forum
https://www.kickas.org/cgi-bin/w3t/postlist.pl?Cat=&Board=starch

As far as medications, have a look at postings related to Enbrel/Remicade/Avara these are relatively new medications to treat AS, the downside is that these drugs are extremely expensive and you will need to check if you are covered. Many people have posted great success on these medications.
Check out the AS Pharmacy Forum
https://www.kickas.org/cgi-bin/w3t/postlist.pl?Cat=&Board=drugs

Myself, I think the answer lies in finding the right combination of Diet/Medication/Exercise that suits you, everyone is different.
There is a saying here "Use it or Fuse it", exercise is really important. Some suggestions are Yoga, Pilates, Tai Chi.
Hydrotherapy is also well worth trying.

One other thing, learn as much as you can, you may find your Doctors knowing very little about AS, and I suggest that you become proactive in your appointments, ie suggesting and discussing things that you find on this site with your Doctors.

Look around the site, there is a lot of useful information here.
If you have any questions, post them up and you will be surprised at the amount of responses.

Another thing to watch out for is Uveitis (a form of Iritis), which is common with AS.
https://www.kickas.org/images/upload/uveitis.jpg
If you get this see an eye specialist immediately, as permenant eye can occur if not treated.

The following link's are some light reading on AS.
Click Here
https://www.kickas.org/guide.shtml
This link also descibes the link between IBD (GI) and AS.
http://www.emedicine.com/oph/topic721.htm
http://www.medicinenet.com/Ankylosing_Spondylitis/article.htm

Also if you go back to the main page https://www.kickas.org you will find the following sections with great reading information.
Medical Center
Diet Center
These sections are well worth reading.

Also if you need a good laugh there is the Jokes Forum
https://www.kickas.org/cgi-bin/w3t/postlist.pl?Cat=&Board=humor

Sorry for all the reading material.
Take Care
Wayne

You will probably not find a Rhuemy with AS knowledge, that is from my experience and a common theme from new people on kickas.
My suggestion is that you find one that is willing to listen to what you have found, and is willing to discuss the pros and cons of what you have discovered and one that will discuss your treatments. You need to become proactive in your Doctor's appointments.

The most successfull Rhuemy's seem to be the one's who want to treat AS agressively.

You will find a lot of support and knowledge from KICKAS. Use this information and what you have already collected together to help.

Take Care
Wayne

HI! Welcome to KA, I see you have already got the usual welcome with the
lots of helpful information. Great place to come to get your questions answered
because most likely someone here has already gone through your experiences
with AS.


Good Luck!

Maxine

"Mike's Mom"