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It’s taken 22 years to get here!
#284259 05/19/20 05:15 AM
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That’s right. 22 years. 42 yo male that has had back problems since my late teens. I have been through several doctors, had 3 back surgeries and was misdiagnosed with RA and was told that I didn’t need to worry about it because it wasn’t a severe case. It finally took getting a job that doesn’t offer health insurance and going to a sliding scale clinic to be diagnosed within 2 months of my first visit. MTX was a nightmare so I was put on humira and oh boy!!! I am a different person now. No pain, ibs is under control, and fatigue has been reduced. Just wanted to tell all of this to people who understand it because no one in my life gets it. I look forward to getting to know some folks who deal with the same things that I do. So glad that I found this forum!

Re: It’s taken 22 years to get here!
Dogcartree #284260 05/19/20 11:42 AM
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Welcome. Your story of multiple mis-diagnoses is, unfortunately, common. Congrats on finally getting on the right track.

Re: It’s taken 22 years to get here!
Dogcartree #284262 05/20/20 05:33 PM
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Thank you so much for sharing. This is my first post but our stories are painfully similar. I am a 45 yo female. I have fantastic insurance but my doctors never figured it out either. Since my teens I've had strange pain that everyone wrote off as growing pains, bursitis, hypochondria etc. Around 2003 I was having pain that I could only describe as "my butt and internals feel like they are in a vice" that would wake me up at 1:00 every morning and the only way I could find to make it tolerable was to get out of bed, stretch, and basically roll around on the floor. The pain would subside as soon as I had gotten up and had a hot shower. The GP swore to me that any pain that gets better with movement is muscle pain and gave me a prescription for heavy-duty muscle relaxers that did nothing. Over the weeks and months the pain would move around, wax and wane, and the time of night it would affect me would change to the point that I really believed I was a terrible hypochondriac and quit going to the doctor. Then in 2005, over the course of three days I went completely blind in one eye. I went to eye Dr who referred me to a neurologist who did some MRIs and said I have MS. A couple years later, the unexplained abdominal pain got to be too much, so I went to a gastroenterologist who did a colonoscopy and declared that I have Crohn's disease (although I have no other GI symptoms and told her about all my other pain). I continued telling my neurologist about my alternating/moving butt and abdominal pain and her answer was "hmmm. that's not caused by MS". At one point my sternum hurt so bad I ended up in the ER to see if I was having a heart attack. Last year it had gotten so bad that like many others, I resorted to Dr. Google. I came across stories that sounded like I had written them and I finally felt understood. I asked my doctors if they thought it could be Ankylosing Spondylitis and they all said "probably not, AS is very rare, plus it mostly affects men, and besides - you already have MS and they don't occur simultaneously". I finally just made an appt with a rheumatologist who first visit took x-rays of SI joint (bilateral subchondral sclerosis) and blood work (HLA B27 +). Such relief to have SOMEONE - ANYONE tell me I'm not crazy. Then a couple weeks ago I had the worst flare I've ever had. It took 15 minutes to shuffle-walk with a cane from bedroom to bathroom (about 20 steps). When I got to the toilet there were tears streaming down my face and I had to call out to my husband to come help me sit because it hurt too bad to bend to sit on the toilet. That's when I turned back to Google and came across the forums. Wow. I thought the NS diet sounded like a bunch of BS, but was desperate enough to try anything. Within a week of eating very little starch or sugar, I feel better than I have in decades. Thanks to you and all the others on these forums for more help than any PhD - you've saved my mind and body!


dx Multiple Sclerosis in 2005 - tried Rebif, Copaxone, Gilenya; dx Crohn's in 2012
... question both dx above - think it may have been AS symptoms
dx AS 2019 - HLA B27+; radiographic evidence of bilateral sclerosis of SI joints
Currently using diet, +pre/probiotics, +fish oil, +tumeric. Medication and Pain free (at least for now)
Re: It’s taken 22 years to get here!
Dogcartree #284263 05/20/20 05:51 PM
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P.S. I've been pleased to see the Imagine Dragons MonsterPainInTheAS commercial telling the world about AS. However: it really irks me that they make it sound like back pain is the ONLY symptom.I wish that monster would just steal my coffee cup! My monster feels like it's digging its claws into my hips, wringing out my intestines and chaining me to the ground. I also think Novartis should do a better job of disclosing that they are behind the ad. My 2 cents.


dx Multiple Sclerosis in 2005 - tried Rebif, Copaxone, Gilenya; dx Crohn's in 2012
... question both dx above - think it may have been AS symptoms
dx AS 2019 - HLA B27+; radiographic evidence of bilateral sclerosis of SI joints
Currently using diet, +pre/probiotics, +fish oil, +tumeric. Medication and Pain free (at least for now)
Re: It’s taken 22 years to get here!
Dogcartree #284265 05/20/20 07:55 PM
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Perhaps the psychological factor also plays an important role in the progression of the disease. In addition to genetics as well as microbiome (gut). Unwanted, stuck in ourselves emotions exacerbated with stress. Inability to feel
Consciously, accepting dark emotions. Not everyone with hla b27 gets AS. And as far as I agree messing with your gut is going be of the major environmental components, ability to wake up each morning and taking your time to look into yourself as your own mirror and allow the emotions to flow trough us can make wonders. It’s usually the road not taken.


diagnosed with AS April 2018, starting with cervical pain/stiffness; Aug 2018 enthesitis/bursitis left Achilles
diagnosed with AAU Nov 2017 (7 flares so far)
Eosinophilic Gastritis
Sulfasalazine 3g 08.2018-05.2019 (worked for AAU & peripheral)
Supplements:C/D, omega 3/Probiotic/ Mediterranean NSD/curcumin
swimming/yoga/pilates
Predonisone in case of another AAU flare
Re: It’s taken 22 years to get here!
Dogcartree #284268 05/20/20 08:39 PM
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It’s nice to hear from you all. I am currently gearing up to start a new diet plan to help with symptoms. Still working on getting fatigue in check. I still deal with depression and recently started antidepressants and counseling. I have always had sensitivity to light that I now know is a by product of AS and it is getting a little better. I am greatly relieved to have my gut issues under control. I was to the point of diarrhea up to 10 times a day for weeks at a time which is a terrible way to live. My employer is very understanding of my absence and only wants me to get better which for missing weeks of work at a time is very rare these days. Most places would have canned me moons ago. My spouse is finally coming to grips that I have a disease and I’m not just being lazy. It’s been a long road to get here for sure. My family swore I was a drug addict for years due to my lack of interest in life and constant sleeping. The weird thing is I had heard of AS once when reading an article about the guitar player from Motley Crue and how his spine was growing together and making him hunch backed and I thought “what a terrible disease to have “ 15 years later I hear people tell me “what a terrible disease you have”! I read that article while sitting in a doctors office awaiting plans for my first back surgery to repair a disc at l4/l5 that was damaged due to the fact that my l5 vertebrae was fused to my sacrum. Life is weird my friends!!

Re: It’s taken 22 years to get here!
ASin9pain #284277 05/23/20 06:59 PM
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What is the NS diet?

Re: It’s taken 22 years to get here!
Dogcartree #284278 05/24/20 01:29 PM
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NS = no starch

Re: It’s taken 22 years to get here!
Dogcartree #284281 05/26/20 08:26 PM
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One surprising thing I've discovered by working to eliminate starch and sugar from my diet is that my support system has grown.

My husband doesn't get it; my kids are young; I don't really have any other family around. I've always felt weird bringing up health issues with friends - no one likes a complainer. Now, when they see me get a burger with lettuce instead of a bun or turn down a beer or cookie (all my favorite things :-) they ask and I just say "health experiment". Some leave it at that, and that's fine. Some ask detailed questions and we end up having some deep conversations.

Plus I've lost almost 10 lbs in the few weeks I've been doing it, and been pain-free (except for one night when I couldn't resist the desert a friend brought by). Lots of great motivation.


dx Multiple Sclerosis in 2005 - tried Rebif, Copaxone, Gilenya; dx Crohn's in 2012
... question both dx above - think it may have been AS symptoms
dx AS 2019 - HLA B27+; radiographic evidence of bilateral sclerosis of SI joints
Currently using diet, +pre/probiotics, +fish oil, +tumeric. Medication and Pain free (at least for now)

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