Medical Folks: Ankylosis Spondylitis

[Snydershrugged]

Hey Board Medical pros,

My Dad finally has a diagnosis for all of the pain and vertigo he has been having for the past 6 months.

Its a disease called Ankylosis Spondylitis and its much like the symptoms of Rheumatoid Arthritis but resulting from bone spurs growing and fusing from his spine.

Needless to say, after just losing his wife last year and then having so many painful health concerns, my Dad is upset. (It just sucks to see the guy known as a tough as nails farmer reduced to tears of frustration).

This is a permanent condition and can only have the symptoms treated from what I understand.

Do any of you know of alternate health approaches beyond the shots he will be getting? Things like supplements and alternate therapies? I immediately thought of chiropractic care and there are some sources that say to go that route, but others that advise against it.

I'm having a hard time helping my Dad and I would be grateful for any guidance you can lend me.

Thanks and God Bless

 

[Nobody]

My wife was diagnosed with it 3 years ago. The injections do absolutely nothing, as your father will learn. They can do them something like 4-6 times a year, but it amounts to nothing more than a paycheck for the guy doing them, because they do absolutely nothing. The best one my wife had gave her relief for 2 days. Her cousin, who also has it, never had so much as a single day of relief, and said they actually cause her more pain. Both quit getting the injections after almost a dozen failed attempts. If your father stays on that route, they will eventually work their way toward injections in his neck, which will make his neck feel great, but do nothing for his back or for his arms and legs when he starts having pain there.

My wife has been to countless specialists and surgeons, and her symptoms have remained steady her entire diagnosis. She takes painkillers every day, and they do more harm than good in my opinion. They also have her on 1800mg a day of Neurontin, which seems to be the most beneficial to her, and she also periodically gets put on anti-inflammatories both steroidal and non-steroidal, neither of which seem to do much good.

Unfortunately, it's just a pretty ****ty condition. All the doctors said she can go through periods where the symptoms go away completely for years, and she can go through periods of pain for years. It's just one of those things they can't really do much about.

I did tons of research on it for her and found out that a ton of people benefit from chiropractic care, but that doctors don't like to recognize it as legitimate so they recommend against it. My wife is a stubborn ass that won't try anything new, so she hasn't tried it, even though other patients she has spoken to that tried it said it works great.

Hopefully he won't be one of those like my wife who seems to go through extended periods of symptoms. It's not constant horrifying pain or anything, and the tougher he is the better he will do (my wife has zero pain tolerance) so he should still be able to lead a pretty normal life for the most part. He'll have bad days and good, but hopefully far more good.

Most sufferers go through a period of a couple of weeks where they will suddenly start getting extremely crippling migraines. My wife suffered through horrific pain from them before I discovered something did exist that stopped it immediately and permanently. I took her to the ER after reading about something called a headache cocktail. They injected her, and she was perfectly happy within minutes. Then they gave her a prescription for Fioricet and Topomax. Those kept her from ever getting them again. Just keep that in mind if he ever develops that symptom.

I wish you all the best of luck in dealing with this. It's no picnic to watch someone you love deal with pain, but it's gotta be tougher for them going through it. Just be willing to go the extra mile when they need you, and it'll be ok.

 

[Snydershrugged]

Thanks man, Sadly, I've gotten all the same type of reports thus far. Doubly unfortunate is that my dad will also likely avoid the Chiro too. He's an old school "Do whatever a medical professional says" guy and that leaves out most alternative approaches.

This sucks

 

[Nobody]

Yep, stubbornness. It's easy for us to say that we would do this that and the other, but we aren't suffering from it. I personally think most alternative treatment has probably earned the reputation it has, but I also know that some of it works.

Example: My dad was diagnosed a few years back with Hep C and cirrhosis. He got the Hep C from a blood transfusion in the early 80s, and never drank but the virus went undetected so long it caused the cirrhosis. He ended up in the hospital with an enlarged liver and bleeding problems 4 years ago, and his bloodscreen numbers for liver health were horrible. The first Gastroenterologist that saw him told me to prepare for the worst, because it was so bad that he likely wouldn't make it more than 6-12 months.

After spending a week in the hospital, he began treatment of Ribavirin and Interferon. It was a combination of pills he had to take daily, and shots he had to self inject weekly for something like 28 weeks. A week in, he was looking and feeling terrible. He ended up back in the hospital. They said the treatment was killing him, because it was depleting all of his red blood cells, so his body lacked oxygen and he was severely anemic. So they gave him iron supplements, and told him to get genome testing at VCU and go with the treatment they recommended.

After he did all that, they recommended the same treatment that nearly killed him, and said he wouldn't make it if he didn't stick with the plan this time. So he did it, and he got worse yet again. After treatment nearly killing him twice, he decided to let me have a go at researching alternative treatment online until I found something that I would be willing to do if I was in his position. They told him that he would need a liver transplant to survive, and that they based it on your MELD score. His was a 16, and 19 is full liver failure. His Hep C viral count was over 645,000 at that time. He stopped treatment, and I told him to take milk thistle supplements, quit eating red meat, reduce the amount of pork he ate, drink gatorade daily, and reduce his sodium intake. So he did all that starting about 3 years ago, up until now.

Last month, he went for his yearly at VCU, fully expecting to be put on the transplant list. The tests were done, and when the results came in, the doctors were all baffled. His MELD score is now down to a 9, and his viral count for Hep C is under 30,000. In medical terms, it's virtually eradicated. All thanks to alternative treatments that his doctor told him would absolutely not work.

So it's not all BS, some alternative treatments are extremely effective if the patient is willing to try them.