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

I will try and make my story short, but I need advice and direction.

I am a 40yo male living in Texas, U.S. I saw a chiropractor in February 2012 on the recommendation of a co-worker. Ironically, my symptoms were chronic fatigue, not back pain. After several manipulations from the chiropractor, I had terrible pain in my lower back. Subsequently, I was ordered an MRI.

The radiologist m.d. interpreted my MRI and found that I had a herniated disc between L5-S1 and annular fissures between L1-L2, L3-L4, and Ankylosing Spondylitis. Afterwards, I saw two Orthopedic M.D.s and one Anesthesiologist/pain management M.D. All four M.D.s diagnosed me with AS.

Not one of these doctors explained to me the prognosis, treatments, etc. for AS. This is typical in the U.S., as doctors must deal with a general public who cogitates, reads, and writes at an elementary level.

I have received two rounds of steroid injections while under sedation, and have been prescribed hydrocodone/acetaminophen tablets. I do not like these drugs and want to get back to healthy living. However, I am in much pain and don't know what to do.

For those of you reading, if you have advice and directions to point me in, please tell me.

Thank you, so much!

Flynt

Hi

In terms of medical treatments - hydrocodone and acetaminophen are sometimes used for managing symptoms but are not the main types of pharmaceuticals used for the treatment of AS. A competent rheumatologist will be able to explain the various meds used for AS that target the inflammation such as TNF-inhibitors, sulfasalazine, NSAIDs.

In terms of alternative treatments - many find benefit to experimenting with diet. There are also various anti-inflammatory supplements that people take that don't have the bad side effects of NSAIDs. There are also nutritional supplements such as vitamin d which may help to reduce inflammation.

You need to see a Rheumatologist. Ankylosing Spondylitis is a Rheumatological disease that is correctly diagnosed and treated by Rheumatologist.



It is very positive that all four MDs are in agreement. Generally Radiologists do not diagnose. They make suggestions of possible diagnoses or possible additional testing based on imaging results. Orthopedists generally do not offer a definitive diagnosis of a Rheumatological disorder as it is not their area of expertise. I have certainly known Orthopedists to say something like "it looks like AS, you should see a Rheumatologist to confirm." Pain Management Physicians also do not usually diagnose Rheumatological conditions. Again, it is not their area of expertise. I am impressed that they all came to the same diagnostic conclusion, but somewhat troubled that they apparently did not follow that up with a referral to the appropriate specialist to definitively diagnose and treat this condition.


I am sorry that you have had this experience. That has not been my experience with physicians at all. Perhaps the doctors that I come into contact with treat me differently as they know that I do work as a non-medical professional in the medical industry. However, that has also not been my observation of the numerous physicians that are employed by the major national health care corporation that I work for. (My office oversees all of the financials, all of the patient satisfaction surveys, and all of the client input on patient/physician relationships for every clinic and hospital in our company's system.)


The steroid injections are a short term solution. The hydrocodone/acetaminophen medication is a treatment for pain. You need a long term solution for inflammation. If this was the only form of treatment that you were offered, you have been mistreated. You should have been referred to a Rheumatologist and/or started on an appropriate anti-inflammatory course of treatment. You mentioned wanting to get back to healthy living. You can live a long healthy life with AS. Some people choose medications to help them live the way they want to. Some people choose natural treatments like diet, supplements, acupuncture, and exercise to treat their disease. Although there is very little scientific evidence behind diet, there are people who claim great success with it. Personally, I choose a mixture of medications, diet, exercise and acupuncture. It works for me. I have recently begun training for my first marathon - something that I could never have imagined 10 years ago.

The first step in living a healthy life is to find the correct type of physician to definitively diagnose and treat your disease. The physician you choose should treat you with courtesy, concern and respect. They should honor and assist you in reaching your goal to return to a state of good health. Good doctors are out there. I wish you luck in finding the right one for you.

Hi Flynt and welcome to the board. I hope you stay here because you will be able to get all of your questions answered here. There are no doc's on here so we do advice that you ask your Dr.s first before you try anything we suggest from the board.

This is a great group of people here and we are all here to help with the physical, the emotional and sometimes the spiritual. This family of ours here have saved many of lives many times. When one is down, we are here to pick them up and when we are down, the others are here to pick us up.

This is a disease of many facets and that is why there are daily questions. Please learn all you can here. I have had A.S. since I was 28 and went into a rather lengthy remission at the age of 34. Enough time to raise my kids. I am now 54 and quite progressed so you might be confused because some on here are new to the disease and some of us oldtimers are still trying to kick some A.S.! Please ask whatever you want. Again welcome. We hope you stay with us.

You definitely should see a rheumatologist for formal diagnosis and see what they suggest for dealing with the inflammation that is what causes problems in AS. As the other replies have suggested there is also a lot of self help you can do as well as, or in some cases instead of medical treatment. The no starch or low starch diets do seem to work for a lot of folk, even though its difficult to find proper validated studies on their affect. Regular low impact exercise is essential, as is performing a daily routine of stretches to maintain range of movement. You can google both of these things or search this message board to find out more. Joining the national spondylitis association will also give you access to more info, though you can get a lot of that free. Knowledge is power, and the more you know about how this disease works, the more able you will be to deal with it.

I'm incredibly surprised that you have only been offered pain relief, but perhaps not so surprised given that you have only seen orthopaedics and pain management. You do need to get on the books of a good rheumatologist who understands spondylitis asap.

Thank you all for the advice. I will find a rheumatologist as quickly as possible. I am relatively ignorant at this point, having a lot to learn.

Welcome! I am so sorry about your pain and your diagnosis. The good thing is that you got a diagnosis so you can get on with treating it.

There are so many drugs and we all react so differently to them. I hope you have made an appt. with a Rheumatologist.
So many people I know have done really well on Enbrel.

The injections never did help me either. For pain relief, the rhizotomies help. You do need to be on a medication though to hopefully help the disease process.

Hope you get some relief.
Possi

hello flynt, welcome!

below my name, you'll see what i am doing to manage mine.

a combo of meds, supplements, and therapies.

its been a long road to get there, and took having a good rheumy to get there.

had to go to several others that were not helping me before I found this one.

Good luck!

Just wanted to say welcome aboard!!!! You will find answers and comfort in our family here. You are not alone.
I will echo see a good Rheumy.

Cindy

I'll second all the others: Welcome onboard!

Oh, and sometimes the things we need to get through the day, and give a little relief can be simpler than the medicines. I find a few hours of relief can be just as important at times.

And with that in mind:

Long warm showers and baths
Cold packs
Exercise ( I know how hard it can be to even start with fatigue kicking in, but when I can do it: bliss afterwards for a few hours)

Without these three I would not be able to continue working.