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Does this sound like AS? #283692 11/01/19 05:27 AM
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CLee923 Offline OP
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Hello everyone,


I've been waiting over three months for my account to get approved on here. (Must be a long waiting list) eek


About me: 27 year old - male - caucasian - 6'1- 230 lbs

I was wondering if what is wrong with me sounds like I might have AS, or if someone else could point me in the right direction? I know this isnt a substitute for seeing an actual doctor.


My problems began when I was 10-11 years old. I started noticing that my joints were able to "pop" & "crack" much more than they should of. I went to a orthopedic dr and he told me that I have to much nitrogen in my joints that causes them to make noises and that everything was okay.

Fast forward to the age of 16... one day I woke up in the middle of the night after falling asleep on the sofa, when I awoke I couldn't bend my spine at all. I remember it hurting so bad and all I could do was crawl to my room and try to get into bed. The pain was so intense it brought tears to my eyes. The next day I went to the emergency room and they diagnosed it as sacroiliitis, gave me some pain medication, a referal and sent me on my way. I ended up going and seeing neurologist who said that the bottom of my tail bone doesnt connect right with the rest of my spine and I had two options to loose weight or to get spinal fusion surgery. I ended up loosing 50 lbs nonetheless.

(I've never been in any major accident or had anything happen to me)

Sense the age of 16 (Im now 27) I've had a ton of issues that doesn't ever seem to get diagnosed properly, that I feel. My Dr told me a few months ago that I don't meet the criteria to go see a rheumatologist. (My insurance won't cover it without a referal.

My Dr (Has the credentials of a P.A) has done blood work twice on me to check for lupus and R.A (the first time he said the blood work got lost) then tells me that I have neither of them condions after the second test. I told him about all the problems I'm having with my joints and back pain and he ordered xrays, after finding nothing he ordered me an mri and told me the finding were stenosis of the spine.

A few months later after going back to the Dr and complaining about knee pain that would always feel like there was pressure and it would throb and ache and constantly make a loud audible pop noise, I was refered to a specialist who had me get an MRI of my knees and was told that there was a ton of inflamation behind the knee but that they couldn't tell me why and only said that the issues with my joints are crepitus? And that dr Gave me a cortisone shot in the knees and sent me on my way.


Several months later I couldn't stand the pain Ive been having in my neck, spine and behinde the right shoulder blade. I went back to my Dr and he refered me to a nuero surgeon after telling me once again I don't meet the criteria to see a rheumatologist. The Dr I went and seen had me get another mri and take a bone spect test. That Dr ultimately told me that the mri showed I have a bunch of fluid around my brain (not completley sure what that means) and also that I have degenerative disk disease and arthritis in my spine. He said because of my age not toclet anyone do surgery just yet but eventually Ill need it. Then he said all you can do is stay active and take pain medications (but Drs dont give them out anymore due to the "opioid crisis" good luck.. then sent me on my way.

I went back to my regular Dr and he said he also has degenerative disk disease and deals with it, that I should just accept and deal with it also because Im a male. (He's 85 years old)


I don't believe these Drs are giving me the right diagnosis and I might not be getting access to the proper help and or medication that I may need. I wish i could just find a rheumatologist on my own without a referal. I had to quit my job after several years as a welder and cant go back to the trade anymore because its way to physically demanding on my body. So i decided this year to go back to school. Currently I'm extremly low income and on medicaid

Symptoms I have:


Hair thinning/loss - balding on top and extreme thinning on the sides around and above ears

Constant loud crepitus (Hips, Knees, Toes, Spine, Neck, Jaw, Shoulders, Wrists & Fingers)

Jaw used to lock up when i was younger.

It often feels like I have a headache in the back of my neck.
After seeing a chiropractor and xrays he said my neck bends forward way to much and one of my hips is tilted inwards.


2 years I've had a dull achy stiff/tightness feeling around/under my right shoulder blade that also hurts when taking a deep breathe. Going to the chiropractor helped with that but now my insurance doesn't want to cover the visits. Ill often try to bend my arm up and push there or have someone push down and upwards with their heal and sometimes it will make a pop noise and it feels like pressure is taken off the area & the pain will subside for a few days.

My knee pain has stopped sense Febuary 2019. Back in 2015 i went to a chiropracter and he grabbed my leg and pushed sideways really hard on the leg and the knee made a loud snap. For around one year after that i had no pain up untill 2016-2017 and then the pain came back. ( I delt with it untill i got cortizone shots in both knees) the pain has stopped sense then.

For 2-3 months I had pain on the left collar from the neck to atop of the shoulder blade after doing push ups. It has sense mysteriously stopped.

Extreme lower lumbar back pain when bending (ill be down the next day in bed) if i move my hips it always hurts on the left side (I also have to frequently push on hips and pop them to relieve pressure)

If i sit on the floor for longer than 20 minutes my lower back buttocks area will feel "numb" and my ankles will hurt and makes it hard to walk after getting up.

Stiffness upon waking for the first hour or two. I can't bend easily /lift my legs up when I wake up and get dressed I have to sit on the bed or hold onto the walls.

Many nights ill wake up and try to ball up blankets or a pillow and push them under my lower back / buttocks area to ease the pain so I can fall back asleep even though it always wakes me and I have to force my self out of bed.
Side note: I've bought 5 different mattresses in the last several years everything from firm to plush and dozens of different pillows.

Fatigue. I often feel tired and out of energy. I feel best when laying down. I never actually feel fully rested.

Issues with teeth. Thankfully all of them are fixed now. I'd have spots towards the gooms that would bust off and leave a hole on several teeth for no reason.


Spine pain. I wake up and my spine hurts most days 90% of the time (Unelss I sleep only a couple hours) . Usually I'll have a throbbing feeling up and down my spine that is some times excruciating. It makes me want to sleep more but always feels better within an hour or two after getting out of bed. My posture always feels like im slouching foward and I have to force my self to keep good posture. If i move my upper back side to side it also makes a cracking noise and feels like there is pressure on my chest.

Sometimes Ill have redness in one eye. Or frequently my vision will feel blurry and ill want to rub my eyes. It's much worse at night time.

Canker sours in mouth.

Blood in stools frequently over last few years.

Lately I've had trembling uncontrollable muscle movements in my left thumb/hand that comes and goes. 3-4 times in the last two months. Sometimes my hands or fingers will go numb.

A few months ago I had random chest pains that would come and go over the course of a few weeks. Sometimes it feels like an elephant is sitting on my chest and makes breathing feel more difficult.




At my age I don't think I should be having these problems. It feels like my quality of life has gone down hill and is only getting worse the older I get. My life has become a series of limitations, hot baths and medications

Medications I take:

Roboxin - Doesn't help at all/Completely useless - Stopped taking

Celebrex - Seams to help (Causes more GI bleeding)

Diclofenac gel - (helps often if switched and used with icy hot or bio freeze)

Tylenol #4 - Prescribed 25 a month from my Dr. It helps if taken multiple times daily.

Alprazolam - They help but cant take often due to feeling even more fatiqued. Prescribed for anxiety and severe ptsd.


The amount of pain medication I'm prescribed only last for the first two weeks of the months.

My Dr gave me a referal to a pain clinic and the clinic told me they only take so many paitents a year with the insurance I have and are booked up untill 2023.

I just feel so out of options like this is what my life is now. Deal with the pain and try to convince others (who dont understand) that there is something wrong with and I'm not a drug seeker or insane.



If anyone has any clue as to conditions I should look into or tests I should have done or if you think this might be AS or something similar... any insight would be appreciated. I'm going to try to get my DR situation figured out and switch to someone who will give me a referal and actually listen/help me.

If anyone has similar problems.. what helps you get through the day? Any tips, advice or suggestions are also welcome.



Last edited by CLee923; 11/01/19 08:19 AM.
Re: Does this sound like AS? [Re: CLee923] #283693 11/01/19 02:38 PM
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Winston Offline
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Sounds like what you need ASAP is a good internal medicine or family doctor. It doesn't sound like you've had competent primary care. So I'd start there, because that's the easiest place to start. Since you're on Medicaid, do you have access to doctors at a university-affiliated medical center, even if that medical center is in another part of your state? If so, that's where I would go.

When you find that doctor, tell them you feel as if your prior doctors have just been plugging leaks and not addressing the root cause of your problems. Tell them you'd like to get off all the pain medicine you're on (they really like to hear that, these days) and find a treatment to address that root problem. As for what additional tests to demand, have you been offered the HLA-B27 genetic test? A positive result on that test plus all your symptoms would certainly justify a rheumatologist consult. Not referring you under those circumstances would constitute medical malpractice IMHO.

Re: Does this sound like AS? [Re: CLee923] #283694 11/01/19 02:40 PM
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Winston Offline
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Oh, and just fyi: If there's any suspicion of AS, you should be very careful using/choosing chiropractors.

Re: Does this sound like AS? [Re: CLee923] #283695 11/02/19 11:20 AM
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Ken Delano Offline
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What Winston said. Many medical conditions share the same symptoms. AS can take years to show on X-ray. Your Dr's can run CR-P to see what your active inflammation is as WENGREN and SED rate tests. The HLB-B27 test will give your Primary Care Dr the reason needed to send you to Rheumatology.

Oh, and Welcome to the SAA board.


AS/PsA DX in 1988

Retired on disability
in 2005 at age 44
Re: Does this sound like AS? [Re: CLee923] #283696 11/02/19 07:24 PM
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Tacitus Offline
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WELCOME, CLee923:

CREPITUS and SACROILIITIS, eye issues, morning stiffness!! AS without any doubt (IMntbHO).

HLA B27 test should have been performed. ESR and CRP also.

Best suggestion is: Fasting. The connection with food will then become very obvious, and You can then have encouragement to alter Your diet: Paleo raw, keto, might help but Carol Sinclair's "The IBS Low-Starch Diet" with foreword by Professor Alan Ebringer that explains molecular mimicry (the mechanism behind AS), is the very best guide.

HEALTH,
John


Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS

Re: Does this sound like AS? [Re: CLee923] #283803 11/26/19 02:40 AM
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WhiteCell Offline
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Where are you located?


Diagnosed AS 2001.
Started Remicade 2002 - 5mg/kg every 7 weeks.
Right Eye Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. Radio Frequency Ablation 2008.
Cardiac Stent to RCA 9/2020

ICU RN - Seattle, WA
~Grasp The Challenge and Succeed~

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