Re: Newly diagnosed with AS

[Guest guest]

Hi ,

Sorry none are replying to your post. If you look at our archives you'll see

we've been around since 1993. I guess everyone is just talked out.

Our archives have a great deal of information. It's all searchable by word or

phrase.

I'm sure you'll be able to find what your looking for there.

God Bless

Rick

http://risg.org/blog/?page_id=21

User name MEMBER

Password. LMIA

All upper case.

>

> Hi everyone!

> My name is & I have several health conditions. The list is very long,

but I was just diagnosed with Ankylosing Spondylitis. I am

> very upset and scared about it, so much so that I have not been able to even

do any reading on how to manage it. I am too afraid to even LOOK at the

information. I have heard so many terrible things such as surgery from spinal

bones fusing together.

> I am very happily married & we have 3 dogs. My husband is extremely

supportive and I am lucky to have his support.

>

> I also have the following:

> Trigeminal Neuralgia

> Herniated disc in my neck

> bulging discs in my back

> Sacrolitis

> Edema in my Sacrum

> Severe Osteoarthritis for a 34 year old (which baffles my DR since it's rather

advanced for my age).

> Colitis

> and severe bunions that need surgery, but I haven't decided on that yet.

>

> So, I think that is it, but of course I am sure i have forgotten

something!!!LOL. Oh yeah, Asthma is one I forgot. LOL!

>

> Anyway, I am glad to have found this group.

>

> I truly look forward to hearing from anyone on AS and their experiences with

it or any type of arthritis.

>

> Thanks!

> Take Care,

>

>

[Guest guest]

Hi julie

I read your post and looked up Trigeminal Neuralgia.

I think I may have some symptoms. My face is blue on one side, I thought they

were spider veins. I thought a muscle near my temple was sore, but now I think

its that nerve. Also from the side of my nose down to my teeth is sore. It is

much more prominent on the left than right. My teeth, where a dog has fanges,

are real sore. I push on them and get a real gross feeling. Not too often, but

occationally I get wicked headaches. Does it feel like you have a glass of pop

up by your lips and you can feel the fizz?

I think I have AS but I know I have Reiters Syndrome, Reactive Arthritis (ReA).

I guess I'm one of the lucky ones because I got sick right after I got chamydia

(std). People with ReA get ensopathy (sp?). It is a condition where the bone

pinches a nerve where it passes through the bone. Do you have sore heels? This

is a common area where it occurs. Has anyone told you you have this? Also I

have impingment of a nerve in my shoulder, same thing happens.

I also have buldging discs in my back. I know sacrolitis is prominent in ReA.

Have you traced any health problems back to any infections you had in the past?

Maybe something you ate? How long have you been sick? Did it start with a sore

back above you butt on one side? Are/were you achilles tendons sore? Any eye

problems?

Thanks for writing. If you want to write include symptoms along with what you

been dx (diagnosed) with.

Dan in WI

[Guest guest]

Hi

Sorry to be so late in posting back. Welcome to our group. As Rick says we

have been around a long time. I have had Reiter's with Ankylosing

Spondylitis since 1986. Most of us have many other diseases too. This is a

condition that requires a lot of research on your own part. Most doctors

don't know that much about us or they only know what they have read in book.

So any doctor you see be sure to find out how many other patients they have

treated with your conditions. You will end up seeing a lot of specialists

for each condition. The mere complexity of this syndrome will make your

head spin. So keep lots of notes. Keep track of your meds and labs and

tests. Ask important questions and get answers when you see the doctors.

How is your Colitis? Is it under control? Also, watch out for your eyes,

many of us have Iritis and other problems. Many of us in the group are now

aging with this disease and we are finding even more problems, so there is

always something new to deal with. I came down with Sjogrens about 3 years

ago and I am almost 64. So be on the alert for any new symptoms. I also

had Shingles this year, my first time was 15 years ago. Basically, we have

immune systems that are prone to problems.

Do you have a good support system? Friends who understand are invaluable as

most times family members do not understand. Also, good church support and

faith in God are the best foundation. I do volunteer work and that takes my

mind off of the pain.

Please feel free to post any questions. Many of us read the digest, but

forget to repost. Hope things work out better for you.

God Bless

Priscilla

In Tucson, AZ