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Newly diagnosed with AS
#101591 12/12/05 03:32 PM
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Hi everyone. I was diagnosed with AS about two weeks ago, and I am just doing some research and whatnot on it. I read several topics about it, and noticed alot of varying factors of the disease. I figured I'd put everything I am having(symptom wise) and see if anyone else is having the same issues. I am in the US Air Force as a Hydraulic Technician, so it greatly affects my performance at work.
Around Sept 03, I got severe pains in my lower back from running. The pains then gave me shin splints, and then my feet were killing me. Standing for long periods of time hurt my feet. Nothing was done about it though until I got sick in Feb 04.
Originally they thought I had reactive arthritis since this all started after me getting sick off of McDonalds. I puked for 6 hours straight, finally, went to the emergency room. My lower back was in outstanding pain. It went away after I got out of the hospital. About a week later, my right shoulder started having this numb pain in it. After a few days, it started popping around. The pain went away, and the popping around stayed around. About a month and a half later, the pain came back. I went back to my primary care manager(PCM) and I was put in physical therapy. 6 months of physical therapy didn't do anything. During the first two sessions of PT, the lower back pain came back. They noticed my foot pain as well, and tried doing PT on them as well. One of the excercises revealed my wrist pains. When I bend my wrists back or foward, and hold it, severe shooting pains start going through them. Weight makes it worse. Finally after all the PT and not getting anywhere, they sent me to an orthopedic surgeon off base. They took MRIs of my shoulders, and hands and gave me splints for the hands. After convincing the stupid Dr. that I didn't have a torn rotator cuff(I never had a strength problem), he diagnosed me with SSS(snapping scaupula syndrome). He also noted inflammed ligaments, and had some tendonitis in both shoulders. They sent me to a neurologist to get an EMG done on my arms to see what was wrong with my wrists. They found slight pinching of the nerves at the elbows, but they wouldn't diagnose me with CTS. In the meantime, I finally got to see a podiatrist about my feet. They said I had severe flat feet, and that I needed orthotics. So, I got the orthotics. No real difference in the pain after 6 months of having them. After chewing out the orthopedic surgeon for taking 8 months to diagnose me with SSS, he recommended that I see a Rheumatologist. So I go there, and am diagnosed initially with ReA. He said, don't spread that word out, I want to get X-rays and blood work done first. So I got that done, and I tested positive with HLA-B27, and my x-rays showed that my lower spine was straight(no curveature whatso ever). They also noted bone erosions in my feet. I was then diagnosed with AS. After reading up on it, it all makes sense now, all the joint pains, the stiffness everytime I get up, the chronic lower back pain and foot pain. I'm sorta happy I got diagnosed with AS, not because I have it, but I finally know what I have.

Right now they have me on two meds, which I guess is the first step. Since Motrim didn't really do much, they tried Trilisate. That stuff made me dizzy and crappy feeling, so I went back to the Motrim for now, and its doing its job, sorta. They also got me on Prednisone, which I don't think it is helping at all either. I go back for a follow up on the 21st. Hopefully I'll get the second step in treatment.

Any feedback?


SAS
Re: Newly diagnosed with AS
#101592 12/12/05 04:57 PM
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WELCOME, SAS:

You are young enough to greatly benefit from elimination of starches.

The problem with diagnosis is that you are NOT LIKELY to get proper treatment, and some 'treatments' can actually accelerate this disease (like NSAIDs) or create new ones (like prednisone).

The combination, long-term, of diet plus DMARDs is the only reasonalble way to treat this disease. Please have a look at the NSD Forum and there is a recent posting that contains book recommendations. THESE ARE ESSENTIAL and the only one left off the list is the FIRST (1972) modern book about proper treatment of AS: A Doctor's PROVEN New Home Cure for Arthritis, by Giraud Campbell, D.O.

You may also check out Ebringer\'s site to understand more about WHY your doctor has the potential to do more harm than good! Out of inexperience and ignorance Ebringer's work is not yet 'accepted,' but his long-term primary treatment method was the combination of his London AS Diet , plus Azulfidine-EN.

This is a very telling episode for IBS:
Quote:
Originally they thought I had reactive arthritis since this all started after me getting sick off of McDonalds
AS, as Ebringer suggests, IS a REACTIVE arthritis, but we all have some level of IBS; it is the combination of PROTEIN with STARCH flour from the bun and perhaps even the FRIED STARCHES (french fries or even breaded onion rings will do this). These are 'experiments' that you will repeat--but NOTICE what happens!

Good luck to YOU,
John


Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS

Re: Newly diagnosed with AS
#101593 12/12/05 10:02 PM
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I hope you have bumped into the Military and Veterans page on this site by now. You need to get smart on where you sit with the USAF on your AS. There is a lot of good info there that will help you tremedously if they start talking MEB/PEB. Most folks are caught flat footed by the process and end up with less than desirable results.

Re: Newly diagnosed with AS
#101594 12/13/05 12:25 PM
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Can you post the links to the military and veterans sites? I am being MEBed as we speak, so I need to get cracking on the research.

Thanks


SAS
Re: Newly diagnosed with AS
#101595 12/13/05 01:04 PM
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http://bbs.spondylitis.org/cgi-bin/ultimatebb.cgi?ubb=forum;f=23 is the direct link.


This forum is about the fifth one down on the message board page of the SAA website.

Where are you in your MEB process?

Re: Newly diagnosed with AS
#101596 12/13/05 01:05 PM
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http://bbs.spondylitis.org/cgi-bin/ultimatebb.cgi?ubb=forum;f=23 is the direct link.


This forum is about the fifth one down on the message board page of the SAA website.

Where are you in your MEB process?

Re: Newly diagnosed with AS
#101597 12/13/05 04:23 PM
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SAS,
I also have the feet and wrist problems!!
In fact, my wrists were my very first problem.

I'm sorry that you find reason to be here, but glad that you found this site.
The no starch diet is definitely one way to go.
Myself, I am on a cocktail of drugs. Right now, Enbrel, methotrexate, sulfasalazine, 5mg prednisone, leucovorin, ultram for pain and Soma to sleep (I also have fibromyalgia which developed about a year after my first AS symptoms).
First, I want to say be careful of the prednisone. Long term use at high dosage can have some really nasty and serious side effects.
Has your doc spoken to you regarding starting DMARDS? (Disease modifying drugs?) Perhaps the doc will address that on your follow up visit.
DMARDS (methotrexate, plaquenil among others) are usually the first line of defense. These drugs help to stop the inflammation and therefore the progression of the disease. Usually these are tried first, and if no response is had, biologics like Enbrel or Humira is usually the next step. These are very expensive, but have been shown to be effective in stopping the progression in a lot of people.
At any time NSAIDS (like Motrin, Clinoril or Relafen) may be added in as an extra boost against the inflammation.
I think you are doing well-trying to research this disease so that you are prepared. You may want to check out the no starch diet thing and see if that may be the way for you to go. Armed with knowledge, you will be better prepared to make decisions regarding treatment.
Please let us know how you make out, and good luck to you....
Oh! and thanks for your service,
Charlene

Re: Newly diagnosed with AS
#101598 12/14/05 05:41 AM
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I am just awaiting my commanders letter for submittal right now. However, I am trying to stall it now so I can get my diagnosis into the med board. Right now they are MEBing me for bilateral flat foot and right Snapping Scapula Syndrome. I am hoping I can get this MEB done, but at the same time, I don't want to get screwed over. I am also hoping that with the diagnosis, that it adds to my disability when they discharge me.

Any insight or help on this matter?


SAS
Re: Newly diagnosed with AS
#101599 12/14/05 06:39 AM
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I meant to mention that I am always tired, and sleep all the time when I am on my days off. I'll get up, just get everything loosened up, and then want to go back to bed. I have no motivation like I used to. Having severe flat feet doesn't help either, cause my feet hurt so bad. The orthotics I got don't help much, especially in the pain area. My wrists always hurt in the morning, and I have to pop my fingers and toes cause they are stiff every time I wake up. I can feel the arthritis in my fingers, and its been like this for years.
I have only been in the AF for 4 years. I did check the MSDS for the Hydraulic fluid we use on the plane, and it doesn't say much about any health hazards that concern AS, except that it can cause diarrea and vomiting if injested. Although I have had it spray in my face before, I never had any complications from it.
I also found out that in addition to my grandmother having Chrons' disease, she had rheumatoid arthritis back in her 40s. She is 71 now, and the RA went into a dormant state, cause she doesn't have that issue anymore.


SAS
Re: Newly diagnosed with AS
#101600 12/14/05 10:43 AM
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Chris, Can you copy this tread over to the Mil/Vets page.


First, the MEB should address all the medical issues you have and determine which are medically unacceptable for military service. You will have a MEB physical and you need to document every issue on that paper work and ensure the doctor performing the physical addresses each issue fully. This will not only help you during the MEB/PEB process, but with VA disability compensation when you eventually leave service. You will have an opportunity to appeal the MEB report if you have issues with it.

The PEB will take the MEB report and determine if any of your conditions make you unfit for further service. This will be heavily weighted on your ability to do your duties but also includes deployability, health risk, Service burdens and other considerations. If the PEB finds you unfit, they will give a rating only for the issue(s) that make you unfit. If the total rating is less than 30%, you will be separated with severance pay. This is not a good thing as every dollar they give you will be taken away by the VA if they compensate you for the disability. If your rating is 30% or more you will be permanently retired with pay and benefits or place on the TDRL if the condition is not stable enough for a final rating. You will have a couple of opportunities to rebut the PEB's decision.

In my opinion, many of you fellow service members with AS have been screwed over by this process. You best defense is to get educated on al the ins and outs of the process and to get the DAV or similar organization engaged. Begin by reading through the post on the military/veterans page as their is a lot of knowledge and lessons learned captured there.

There is a risk the PEB will rule your condition existed before you entered service. If they do, since you do not have eight years in, you will not be compensated at all. If this issue is not identified on your entry physical or any other pre service medical or other records, they will have a hard time proving it existed prior to service but they may try none the less so be prepared to challenge if they do.

Recommend you talk to your rheumatologist about a TNF like Enbrel, Humara or Remicade as it might help you out a lot in preventing further damage from AS. This drug will increase your chances of being found unfit so if keep that in mind as you figure out what you want you future in the AF to be.

Lastly, keep in touch. Do not agree to any MEB findings you do not agree with. Get back to us early and often for advice and assistance. You are very fortunate to have found us prior to the MEB being initiated.

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