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General Message Board for Ankylosing Spondylitis and Related Diseases
04/19/19 05:00 AM
It's very possible she is unable to get all her mail delivered everyday. Their first priority is Amazon packages. They all have to be delivered the day they are loaded on the truck. They will stop delivering mail, if they have to, to make sure all the Amazon delivered. They just bring back whatever mail is not delivered and try again the next day. It is a nationwide problem right now. Those drivers are being terribly abused right now by Management. Some are working seven days a week just to keep up. Vacations are being denied as well depending on how backed up they are at the DDU (Destination Delivery Unit--your local Post Office). She probably needs some encouragement right now. I saw one Ex USPS guy on YouTube who has PTSD from combat in Iraq. He was so stressed out from work that his PTSD was getting out of control. The VA Doctor sent a note to his Manager telling them to cut back his hours and not make him work seven days a week and his Manager told him "its not happening here." He had to get his Union Boss involved and they finally followed the orders. He actually had to quit because of it. I have been in the Logistics Industry for 30 years and stay up to date on what is going on.
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/18/19 11:04 PM
Thanks to your post I checked with my MD here in Washington. Insurance companies and hospitals speak the language of "risk". If you are already at a high dose it would be prudent for the hospital to avoid risk of switching. If your doctor will support it, I would get an inexpensive attorney in my pocket. That also increases their level of "risk" which is the word in their mind for money. Creating an exception for you cost's them less than a problem. Keep us up to date please.
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/18/19 03:58 AM
Much better than the the Alzheimer's forum. Everyone logs in only once.
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/16/19 07:40 PM
Hi Jacruz, any update from the MRI? Whatever the diagnosis is, I hope you find an effective treatment plan. Kind regards, Rich
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/16/19 12:48 PM
I was just given my medical marijuana card. I am still in the figure out what works for me phase. As I want something that I can use and still function at work. So far I have found it makes me giggle then want to sleep, but the pain has not been relieved.
Again there are so many options, I am sure I will find something that works, but it is expensive as insurance does not cover it.
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/15/19 01:13 PM
ER? Notice what? I asked my Rheum for pred as I was hoping to move to a diff biologic and needed a little something in between, but realistically I knew that it wasn't going to work as nothing works for the pain, so I just needed it to help switch into my more productive and fun loving manic side.

You have to realize, the only people who care about us, are ourselves and whoever can make a profit from disease and disease control. That is it.
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/15/19 12:57 PM
I got diagnosed in 2015 and it has been a nightmare. I would run for politics if I knew that I would be able to win and send the whole ministry of health to the gulags.
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/15/19 12:54 PM
Pros - You're on an expensive drug that is supposed to help.

Cons - The drug is so expensive and someone else has to decide if you should suffer or not if you don't have deep pockets or a great medical plan.
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/15/19 12:53 PM
I get it, but probably due to other issues. One theory that was told to me by a doctor is that this may be due to allergies. I have never had allergies before, however I was told that this disease wreaks havoc on you and any little issues you had may be worse or you may pick up some sensitivity... so that may be a clue, not sure...

I would imagine if your ribcage was fused, it would probably hurt to breath in larges breaths.
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/15/19 11:21 AM
My take is that most doctors don't understand this disease and the pain it causes. Most often you hear stories about AS people being told by their doctors that the pain is in their heads, or physio will stop the pain.

For my doctor to give me Naproxen over Tylenol was a struggle, and when I requested Diclofenac to see if it would handle the pain better, I was treated like I was a junkie trying to get my hands on meth or something.
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/13/19 12:00 AM
Rich, cauda equina syndrome came to my mind too.

Kris, you might want to read a couple of threads by Sean O, who was recently diagnosed with cauda equina. See if anything he says strikes a chord with you. Cauda equina is pretty rare, and there are a lot of other issues that can cause foot and leg problems. So it's not likely that this is the cause for you. But it's a serious enough condition that you should consider it and make sure it is ruled out, just in case...

He posted this thread to try to draw attention to the condition:
http://forums.spondylitis.org/ubbthreads.php?ubb=showflat&Number=282812

And this thread chronicles the events that eventually led to his diagnosis.
http://forums.spondylitis.org/ubbthreads.php?ubb=showflat&Number=282589

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General Message Board for Ankylosing Spondylitis and Related Diseases
04/09/19 03:57 PM
https://www.amazon.com/Original-Tur...54825204&s=sporting-goods&sr=1-3

see if this works Amazon carries them. Turtle neck gaiter.

Any exercise which stretch the trapezius and upper back muscles. Using bands I pull back 30 times at arm level. referral to a PT from an MD is very
common.

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General Message Board for Ankylosing Spondylitis and Related Diseases
04/08/19 01:53 AM
Just a quick note. It has been a long time for me too. Prescription orthotics correctly made helped me. I remember using a home massaging pedicure type tub after work. I took naproxen and had steroid shots more than I should have. I was taught to stretch and I remember I had spurs as well.
But I remember the orthotics as saving me. It went away after a pregnancy but then the sacroiliitis came. A coworker had the surgery for PF but was still in pain and ultimately had to leave retail pharmacy. Danielle
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/07/19 01:51 AM
My brother and his wife have AS. They live in Brazil and Naltexone is what they prescribe for them. My brother also takes Sulfasalazine. My sister-in-law continues to have Iritis flares and both continue to have flares but are short lived. I asked my Rheumatologist (who is also theirs when they are residing in the USA) and I was told that it does work but it doesn't stop the progression of the disease. I was told its similar to the effects of taking Prednisone. My brother was recently told he needs to have spinal surgery in his neck. He may feel well, but the x-rays tell a different story.
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/04/19 02:34 PM
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/03/19 11:23 PM
There is some infor in the oxford text on axSpA. The text is written for docs and this section is above my level. if you call, I'll read it tow you.
the beginning is easy enough to follow. let me know if this section is helpful "pulmonary, renal, and neurological comorbidities in AS patients have recently been reviewed. limitation of chest expansion can impair pulmonary function, but liung involvement iin the form of a slowly progressive bilateral apical pulmonary fibrobullous disease or cavitatioins (with rare fungal infection) is rare and late manifestation of AS in 1-2% of patients. However...
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For Parents and Teens
04/02/19 04:32 PM
Thank you!
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General Message Board for Ankylosing Spondylitis and Related Diseases
03/31/19 05:31 PM
Sean: I do think that I have some sort of age related prostate problem. My groin does not feel numb so that is a positive. I could probably use a walker for any distance but for now I rely on shopping carts when a see one. How do you manage without a TNF inhibitor or have you started one? My rheum said it won't help the arthritis.

Banana: Are you still taking Actemra? I just started it the first of January. My rheum wanted to be cautious and just do biweekly injections to start. It seems to be working---I have decreased my prednisone dose dramatically. My biggest fear is the problem with my lumbar spine because it got my attention in a big way the last time I tapered off prednisone.
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General Message Board for Ankylosing Spondylitis and Related Diseases
03/30/19 10:38 PM
what did the doc or pharmacist say ?
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Athletes Against AS - Tips For Staying Active With AS
03/30/19 08:36 PM
I can’t speak for road cycling...it may he too much in the saddle...if I’m having a lot of low back/SI joint pain, mountain biking makes it feel much better. I would assume it has to do with being rounded forward in addition to the exercise aspect. A spinning class might be a similar relief with less danger of falling and getting hurt.

Just sharing what helps me! cool
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Athletes Against AS - Tips For Staying Active With AS
03/30/19 08:33 PM
Not at all. I’m very fit and am often in the mid to low 40’s.i had to laugh recently because I was having my first nerve block done and I was a little nervous and my heart rate was 50 and my blood pressure was low normal also. (People with slow heart rates live longer!)
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Athletes Against AS - Tips For Staying Active With AS
03/30/19 08:30 PM
I just wonder if I hadn’t gone at it so hard all my life, would I be in this much pain at only 42? Could the wear and tear have accelerated the genetic disposition I have to this disease?
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Athletes Against AS - Tips For Staying Active With AS
03/30/19 08:28 PM
I’ve been suffering pain for years first with deadlifts, the squats. It got so bad that I wasn’t able to do those exercises anymore. Today I decided to try them using 5 lb plates to elevate my heels...I had little pain! I was finally able to get ny low back into the right position! I now have weightlifting shoes on the way!
Consider buying weight lifting shoes.
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Support Groups Information
03/28/19 08:41 PM
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Complications and Long Term Medical Issues
03/28/19 12:35 AM
one of my earliest symptoms was urethritis. i also had 2 bouts with kidney stones (none in the last 30 years).
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