Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group New user, newly diagnosed

Hi David,

Food allergies:
cow's milk - causes a skin condition that can look like burn scars, or red with flaking on my eyelids, I can cheat once in awhile, about once a month.
corn - causes shingles on my "lower back" - took 30 years to figure that one out.
zuchinni - causes internal hives that will shut down my system, but I can cheat once a year.
red grapes, including anything made from red grapes-causes depression and I sleep for about 14 hours, it takes about 2 weeks to get back to normal.
raw mushrooms - I think it would give me the same reaction as zuchinni if I pushed it, cooked they're no problem.

Mom and dad both had colitis in the late 60's - stress related, my sister was dying of a brain stem tumor. Mom also has had diverticulitis, esophagitis, hiatal hernia. No colon cancer in the family.

As a teenager, I remember having a stiff neck so bad I had to stay home from school with hot packs on it - I couldn't even raise my head. It happened a couple of times.

There've been many times it felt like I was coming down with a cold, but didn't, if that's what you mean: "Do you have a history of aches and pains cold etc which no go anywhere or linger?"

Last Thanksgiving I had laryngitis. Quiet holiday for everyone. :)

Hot water stretching sounds wonderful, we need a hot tub. Pool exercise doesn't make me sick and I find that 6 minutes on a treadmill or cycle make the neck swelling start and the feeling of getting a cold in your neck starts.

I hope this is enough info without being way too much.

Thanks,
Beverley

Thanks Cristina,
I'm in central CA, between the infamous Modesto, and Merced. Transplanted two years ago from Oregon where today it's snowing.

How far south are you?

Beverley

Welcome to KA. you will find everyone very helpful and you will get
much support and a good place for some laughter.

Good Luck,

Maxine

"Mike's Mom"

Hey Beverly Welcome,

Sorry to hear about all of your recent problems. Sure glad you found this site, as you will learn and share what many of us live day to day. I must say I have to disagree with your chiro, as I have found very few rheumies who can actually help people in our conditions. I have had one doctor tell me 40% of the US population is affected by AS or AS like disease with B-27 involved. I came home and took the doctor some information back for her reading at her convenience. About a week later she called me stating she was sorry and is planning to do more research on spondy like disease so she can be informed for her patients.

My doctor, who understood back pain and AS retired in the mid 1990’s so I only went to other doctors when I could no longer tolerate the pain for medication. Finally, after having a myocardial infarction in January 2003 I found a PCP that would listen to what I had to say before interrupting and making diagnoses before I could get everything out. I suffer from AS and Mechanical Spine disease (degenerative disc disease with 9 herniated and ruptured discs). I’ve been dealing with AS since 1986 with symptoms going back 31 years. My doctor now has ask me several times joking “when are you going to get your medical degree”, because I have lived and studied the spine and AS so much. She is always happy to hear suggestions on ways she can improve helping any patient with spinal problems.

One thing I have found to help out when you go to the doctor is to keep a journal and make notes of what happened and when, then take it with you for your appointment. I have a lot of problems with my eyes also and when they started acting up I drink a lot of Gatorade to get some electrolytes back in my system. My temperature is usually below normal or will stay at 99 for weeks at a time.

Once again welcome,
Brent

Hi Brent,
Well, electrolytes explains the foot cramps, I hadn't connected it with the eyesight. My husband had me drink some pickle juice for foot cramps, but it caused a huge fluid retention. In fact, I think that's what triggered the final attack of pericarditis. I had a cortozone shot in the shoulder in May that cleared up the pericarditis and helped the shoulder but didn't help with the range of motion. I just drank a bit of pickle juice, guess I'll see if it helps or hinders.

I agree about the journal and have tried to do it but haven't been too successful.
I've learned a lot here today and should have been studying for midterms. :(

Beverley

Thanks for the welcome Maxine. You're so right on all counts.

Beverley

heya beverly, the first thing I would say to you is....dont quit school.....what are you studying for??????? if you go to a chiro no more adjustments, but massages are real good, so is heat and ice.....your chiro probably had degenerative narrowing mixed up with SP/A......they are different, I was told way back in 1987 that I had degenerative narrowing in my lowback..that was a misdiagnoses that often occurs with having AS...if you can start treatment there should be no reason to stop your education...even if you do fuse never give up on anything........WELCOME TO KA.........oak

I am older then I look and I feel older than I am

Hi Beverley,

You mention a long history of having >"a skin condition that can look like burn scars, or red with flaking on my eyelids" and also > "causes shingles on my lower back - took 30 years to figure that one out", and >"internal hives", as well as having episodes of a stiff neck as a teenager.

I'm puzzled why it would take the doc's 30 yrs to figure out 'shingles', since I believe testing for it (especially when blisters are present) is fairly straight forward. Did any of your docs ever consider a dx of PsA (psoriactic arthritis)? It would seem to suit your symptoms, if the shingles dx was not definitive. It would also makes sense with stiff neck episodes, and includes spinal involvement. PsA is in the family of Spondyloarthropathies. Please note that I am completely unqualified and just making these uneducated guesses based on things you've mentioned.

Past skin conditions should be on your list of things worth mentioning to a Rheumy, if you haven't already. Actually, you mention a GP, Chiro, Cardiologist/surgeon,.. but have you been referred to a Rheumatologist yet? I hope so.

Take good care,

mig

Ok Oak, I won't quit school. I was majoring in Art. I got sick and changed my major to Psychology and am taking 17 units (credits) this term. Way too many. The main reason I'm going to school is to have a piece of paper proving to myself that I'm smart. Not a great reason, so I'm changing my major back to Art. Or maybe just take art classes and not worry about a degree. This is a Community College, so I can only get an AA and would have to transfer to get a BA or BFA. College can be exhausting PLUS they give tests - can you believe it at my age??? :)

Beverley

Hi Mig,
The drs diagnosed the shingles, it just took me that long for me to figure out what triggered them. I found some obsure statement online that they could be caused by an allergy to something. I couldn't pinpoint it because corn is in everything. I've never been diagnosed with psoriasis, have never gone to a dermatologist. The GPs look at my skin and just say hmmm, interesting. I have considered PsA as a distinct possibility/probability. Mom always said I got my Dad's horrible skin.

No Rheumatologist has been suggested by the GP. I just contacted the closest one that my insurance co. works with, and the receptionsist said the referral is only if the GP doesn't feel they can deal with it. I may need a football helmet so I don't get injured when I bang my head against the WALL!!

Thanks for the help.

Beverley