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gcvmom

Here we go again!
I think I'd push for another look at that AS diagnosis. Only reason I'm familiar with it is that it often hits people with Crohn's like my difficult child 1, and I know man in our Crohn's support group who has it. As for the medication cost, there are frequently patient support resources to help defray the cost.

Or, you can do like I've had to for difficult child 1's immunomodulator medications and buy them online from Canada!

As for the hospital, check to see if they have discount rates on accommodations for people travelling from afar for treatment. Many facilities do. If they can at least offer a solid diagnosis and treatment plan, you may be able to get a local doctor to coordinate his on-going care with the experts.
 

crazymama30

Active Member
G--he has many of the symptoms, the irritable bowel, the vision problems, the pain it really does fit. I am going to have to get pushy, but I have to be careful so I don't trigger husband and then he won't let me help. He can decide that since he is an adult
 

crazymama30

Active Member
barely could walk, He used me as a walker and I held up almost all of his weight. No incontinence of any type. Can walk better today. He has a lot of those symptoms too
 

crazymama30

Active Member
One would think. The ER doctor said that pain doctor was going to set up a MRI. I am going to push for the evaluation at the big teaching hospital. Will be a pain to set up, but it may give us some answers. Then again it may not, but you never know untill you try. We need a Dr. House--so do you flutter and many others

Thank you guys for the ideas, keep em coming. Maybe you guys can figure him out and then I can tell the docs! Ideas never hurt
 

totoro

Mom? What's a difficult child?
My husband has Ankylosing Spondylitis and Spondylolysis and Spondylothesis. Which HOOVERS big time. He has had these issues since his early 20's
He developed the Lysis and Thesis from years of roofing and laying brick. They think because he has severe Gout and the Arthritis in his back this is why he has the the Lytis as well. He has one of those Gout issues that NOONE has ever seen as well.
So if a Doctor tells you, "It only develops this way or that".
Well... phooey!
husband has seen some of the best Rheumy's in Chicago and now here, we do live in retirement ville!
His spine is slipping and there are nodules built up... he can have surgery or he can wait until it is unbearable which is what he is doing.
He works on building up his core, which is what the doctor's have suggested.

SOme days I don't know how he gets out of bed.
Because we know what is wrong with him, his Doctors will not give him strong pain medications. They do not want him addicted at his age. They want to keep trying to get it under control. WHich really hoovers on some days when he can't walk...

I hope you can figure it out soon... I feel for you and husband.
 

DammitJanet

Well-Known Member
I have the diagnosis of AS in one of my medical records. I have no clue how it got there. Not real sure if it is real or not. It may be spinal stenosis instead. Im not entirely sure my docs are real accurate...lol. I know I have really bad spine and lower back pain and there is something wrong there. Even coughing sends tingling and pain down my spine.

I go through spells where I need a walker or a wheelchair and then other times when I can walk fine for short periods of time. Im never good for long periods of time.

We will never know what is wrong with my back if I need an MRI unless they pull my MRI from when I was in the coma or if they completely put me under. I am terrified of them. I cant just do sedated. I am phobic.
 

Star*

call 911........call 911
CM,

I am sorry your husband is in so much pain. I think a neurologist would be the place to start, but I'm really not surprised that anyone at the ER has not written a referral or sent you for an MRI.

My first thought is the same thing we got through (DF and I) everytime DF has a spasm. He had surgeries for broken back and has adhesions that are painful. When he goes in they see he is on AD's and that he is on Methadone for pain mgmt? They see that he has long hair, tattoos and immediately think that he is a drug addict looking for a fix. Without a little explanation we usually get a pat on the back (literally) and Tylenol. We have to carry X-rays and doctors names, prescriptions that show he has a legitimate reason for possible unknown pain.

In the mean time? How about a massage for relaxation with a reputable chiropractor? Some warm sand massage may help or a tenz unit hooked up for some electrical stimulation? A warm epsom salt bath? Anything to help relax? I'm thinking your best bet is to get to an MD and ask for a referral to a neurologist to get this resolved. Any chance of that happening?

Hugs - I know where you are and I feel for you both.
 

crazymama30

Active Member
He has a tens unit, but we need the pads. I will ask pain doctor for a scrip and get more. I don't think he could stand massage, too painful. I am leary of chiropractors as we don't know what causes the pain, I don't want it to get worse. A neuro may be a good idea too.
 

DammitJanet

Well-Known Member
Do you need scrips to get more pads? I think the place that you got the unit from will supply the pads. And the gel. The TENS unit isnt that helpful to me though. Helps a bit but not that much.

Funny story. Years ago, the TENS units were much stronger than they are now and Tony got one when he hurt his back at work. This was while I was pregnant with Jamie. He put the unit on and I accidentally hit the nob that adjusted the controls, and it went to high...lol. He was flopping all over the place while trying to reach the controls to turn it off...it was funny in hindsight. LMAO.
 

tiredmommy

Well-Known Member
Wow CM... I just saw this. I hope husband is doing better today and he doesn't lose his his stability over this. {{{Hugs}}}
 

crazymama30

Active Member
husband finally let me call his pain doctor. All day he would not let me.

He has an appointment tommorrow at 2pm. Hope he can make it till then. Pain is getting really bad again. He is so grumpy and mean, I know it is because of the pain, but wow. Kids have been in their rooms all night. He finally went to the garage with a friend--thankfully. We all needed a break from him

His stability is pretty threatened right now. I really don't know what there is to do about it.
 
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