Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Interview for Assignment due Sunday by 11:55pm

Ankylosing Spondylitis- means spine fusion-my spine is fusing together and its effecting other parts of my body, hips,knees, ankles, shoulders, teeth(all pulled now), neck

Rheumatoid Arthritis-my hands and toes are effected

Fibromyalgia-muscular pain,

Restless Leg Syndrome-my legs will not stop moving around due to discomfort

these i just named are auto-immune diseases which means i have no immune system anymore and that my body is attacking its self im in pain 24/7

i also have:

chronic back, tremors/spasms(neurological), osteoporosis(im male), high cholesterol, depression, lyme disease, scoliosis,ED .....

ive had these most of my life(20yrs) and didnt know it, all the doctors said i was faking it all until 2002 when i went in for a physical, thats when i started getting names to all my medical problems....

i'm on 11 different medications which some of the side effects of a few can kill me, my pain is down and my mobility has slightly increased due to the meds so i put my life into GODs hands and praise HIS name every day i wake up....

right now i need leg braces to walk or i will constantly fall down which can break my neck,hips, and spine....i can only walk for short distances 10ft or less other wise i have to use my motorized chair to get around.

I cant drive anymore because my legs go numb/dead after 20 minutes in the car...

so i am strong in faith and i keep my eyes on JESUS every day.

most of my diseases mainly the 1st 4 listed have no cure and are disabling diseases compounded, which means im only going to get worse. i have neurological issues too but the neurologists wont test me. .sweatheart this is a good thing you are doing thank you ....oak

That's great! My sister reported on my condition for a school paper...

My log on name is LINCinNYC

My hips and spine have cause me the most pain over the years...along with muscle pain/spasms that used to be as bad as the bone pain...you see, when in a flare, I could not roll over in bed, get up, put on clothes, etc. But the bone pain/stiffness was different than the muscle spasms, but each were hellish in their own way.

I have had AS probably since my mid-20's, when I had some weird attacks that no one could explain...by my mid-30's I was Frankenstein, and finally in 1997 my eye doc said I had iritis and asked if I had back pain...she told me to get tested for HLA-B27, a marker for AS...sure enough, I had it...am now almost 44 and been on Enbrel for three years, and can do almost anything....used to be on 15 Advils a day, then other pills like Vioxx...glad I got off that when I did...

I tried the No Starch Diet and many supplements while trying to get on proper meds..had good results for the most part...

I think I've barely fused, according to xrays, but sacrolaic joints and lower spine, as well as neck, have been affected...

As before, my early to mid-20's is when I would have debilitating episodes of back pain that would keep me immobilized for days...pain pills were given, and I'd come out of it for months, then something would happen and I'd flare again...more frequently as I got older to the point where in my mid to late 30's it was almost all the time...

I hope this helps and good luck with your report, you rock!!
Peace
Linc

Hi OakleafGirl,

I think it is great what you are doing

Log in name: Angelmom

What has caused you the most pain: by far SI Joints(cortisone injections 4 times) Iritis (too many times to count) Injections in :shoulders,elbows,wrists,feet,knees,hips,ankles,jaw

How long have you had AS: This is my 16th year

Where did you start to fuse first: No fusing yet

How old were you when you first had symptoms: 28

Also I am HLA-B27 Neg, Rhumatoid Factor: Neg Always CRP positive, ANA positive SED Rate is Elevated

Good luck!

Lisa

Kat,

I knew I liked you I turned 44 in May...lol

Lisa

Hi Oakleaf_Girl23

I am adding my Medical Alert Card

MEDICAL ALERT INFORMATION
(Central Auditory Processing Disorder (CAPD), Hyperacusis diagnosed March 28, 2007), Severe Obstructive Sleep Apnea, (CPAP), Acid Reflux (GERDS), Narrowing Airway (MILD COPD), Bronchial Asthma, Lung Damage (scar tissue), Diabetic/Controlled by diet, Psoriasis, Elevated Alkaline Phosphatase, Adrenal Gland (cyst 1.38 cm), Irritable Bowel Syndrome (IBS), Osteopenia, Arthritis [Osteoarthritis (both shoulders, neck, knees, and ankles), Fibromyalgia, Leaky Gut, Bursitis(Hips), Rotator Cuff Tendinitis, ((HLAB27+)(Ankylosing Spondylitis and/or Psoriasis Spondylitis)), Sjogren’s], Optical migraines, (Enlarged spinal canal @ sacrum (number of 3 cm cysts on spine), Hairline fracture on L5, Clavicle slips in and out place, Lesions on my brain (frontal lobe, last tested 2005 and becoming worse)

ALLERGIC TO
All medicines, foods, anything - with sulfites as preservatives & sulfates in them
Medicine
[SULFA DRUGS SULFITES SULFATES (CAUSE BREATHING PROBLEMS) and has caused Anaphylactic Shock] Morphine 292s Tylenol Quinidine Tetracycline Antihistamines Demerol Ibuprofen Robaxin Dodd back pills Clindamycin Ex-lax Dulcolax Colase Vitamin E Penicillin 1st, 2nd & 3rd generation

Hugs

Gerri

where do you get one of those cards ive never heard of them before....oak

What is your log in name:
Xzia

What has caused you the most pain:
Both heels, last year i was barely able to put weight on my feet. They are still hurting but i can walk now.
SI joints also make walking difficult. If i lay down on my back it can take 15+ mins to get up, its like having a knife stabbed in my SI joints. I doubt something can be more painful then this.
Ribs hurt really bad too, making breathing really difficult if i have a flu or a bit of asthma (ribs hurt all winter long).

How long have you had AS:
Not officially diagnosed yet, but my rheumatologist agrees with me my symptoms fit with AS. On a waiting list for an MRI atm.

Where did you start to fuse first:
Havent fused yet, but there are early signs of it in my SI joints and low lumbar spine.

How old were you when you first started getting symptoms:
I was diagnosed with juvenile arthritis at the age of 3. Ive always had pain somewhere for as long as i can remember. SI joint pain started in my early 20's, ribs at 27, feet at 36 and im now 37.

Related problems:
IBS that was quite active in my 20's. Been much improved with diet from around the age of 30 or so.


Good luck with your paper and studies



Carole

Hi Oak

I made up my Medical Alert Card on the computer. I couldn't remember everything I was to tell the doctor. In June '06 my ex-GP told me to find a new doctor. I went 9 months without a doctor. In my travels I had to have documentation of what was going on so I made up my Medical Alert Card. Many doctor said it was very good.

My new doctor said I should change it a bit. He said to put all the drugs I can take on it instead of the drugs I am allergic to. Well I know of 5 drugs I can take, sorry make that 4. Can't take aspirin anymore.

The card is very handy. I printed it up on postcard stock, very small print. Lots of stuff going on, otherwise it wouldn't all fit.

Hugs

Gerri

What is your log in name: Possi
What has caused you the most pain: My SI Joints
How long have you had AS: 35 years
Where did you start to fuse first: SI Joints
How old were you when you first started getting symptoms: Early 20's I think. I had already been diagnosed with RA at age 14.

Best wishes.
Possi

Just saw the request for additionl info.....
Other diagnoses
Rheumatoid Arthritis
Osteo Arthritis
Systemtic Lupus Erythematosis
Chronic Iritis/Uveitis
Hypothyroid
Hyperlipidemia
Blelpharospasms
Dystonia
Dysphonia
Enlarged Liver
Englarged Kidney
Sjogrens
Reynauds
Fibromyalgia

Oh my this ought to be enough. It is depressing me. Speaking of which, I guess you can add that one too. )

Best wishes.
Possi