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#517811 - 11/12/17 01:25 AM What do you feel I really have?
Magician Offline

Registered: 09/21/09
Posts: 1247
Loc: Manitoba Canada
After years of hurting hip bones, butt bones aching and being unable to sit still (it hurts!) I am beginning to lose hope. I keep getting piercing pain in my knuckle joints as if someone is using a wire and poking it into the knuckle.

I get phantom pains in my bones most often my shoulders, ankles and elbows.

I was tested for RA years ago (negative). My eyebrows flake and my skin keeps peeling. The spot on my elbow the rheumatologist said was Psoriasis just looks like dirty skin. It never washes off no matter how hard I scrape it.

I tested positive for HLA-B27 but all definitive tests for AS are negative. My hips and SJ joints have been xrayed many times. Nothing is ever seen. I have 2 degenerative discs and an extra disc which keeps popping in and out of place.

Because I have MS, anything seen on my spine is almost automatically blamed on it. It also means any real diagnosis is a long time coming. My plain film xrays were diagnosed as spinal MS. I disagree with this diagnosis. I feel MS is a garbage diagnosis with everything unexplainable being labeled MS.

My spine continues to hurt when I lay down and I am incredibly stiff in the mornings. I began doing exercises for AS and felt so much better. When I stopped I began hurting again. I continue to do the stairs instead of elevator daily.

Because I take so many drugs my sleep pattern is off and I do not have deep sleeps. I hardly dream and many times I do not go to bed until 2 a.m. trying to force myself to sleep deeply.

So there you have it. What are you think I really have ? Thank you for reading to the end of my narrative. smile

Edited by Magician (11/12/17 01:33 AM)
- Carpal Tunnel in BOTH hands
- Depression (MDD) Major Depressive Disorder
- Pituitary Adenoma
- Scoliosis
- Spinal Arthritis with bone spurs on spine
- Multiple Scoliosis diagnosed
- Herniating spinal disc
- HLAB27+

Previously told Mechanical Back 'Issues'. Hate this term!
Read my story here:

#517812 - 11/12/17 04:00 AM Re: What do you feel I really have? [Re: Magician]
Robin_H Offline

Registered: 09/13/15
Posts: 253
Loc: Hubei, China
Hello Magician:

Your phantom pains in bones and inability to be still because the pain drives you into motion (and sadly your mind into motion and the peace out of it) are experiences I have. So as the non-restorative sleep. I had the phantom bone pains in my late teens.

  • Did you develop new symptoms during or after your heavy use of acetaminophen and what were they? A change in arthritis symptoms -- i.e. development of AS symptoms? This is a common sequence: NSAID overuse then onset of intense AS symptoms.
  • Due to the gut damage NSAIDs can cause this opens the opportunity for good and bad bugs to get deep into the gut tissue permanently! Have you been tested for gut infections or parasites? Scopes at both ends might be worth the risk. Fecal tests are a must.
  • You live in Brandon! Has Lyme disease from tick bites been ruled out? Not that it is your illness but may have been a catalyst in your present immune system dysfunction.
  • What is the order that your symptoms came on and in what year did each start? Consider differences in intensity too.
  • What cites were you living in at those times, what environmental catastrophes have you experienced in those cities and what years were they?
  • Did the catastrophes (or you) alter anything in your home environment: drinking water, radical diet change (became vegan, started drinking soy instead of diary, etc), home renovations, etc?
  • Have you spent more than three months in a different province and noticed a difference in health? Or have you gone on a trip and noticed improvement?
  • Do you feel better when you have been out of the house for a while?
  • Have you noticed long days in the sun each summer changes your health? What happens in those heavenly winters?
  • Have you had a radical change in habits such as became a student and never saw the light of day of a couple of years and felt your health decline?
  • Since many tests for celiac disease are positive for you have you stuck to your arthritis diet, modified it to AS diet, or even tried an elemental diet? What are the results?
  • Did Celiac symptoms precede arthritis symptoms?
  • How do hard cheeses, mushrooms, potatoes, corn, pizza, and grains in general effect you? (fight-or-flight, fatigue,...)
  • Are you a spice lover? If you do eat them how do you feel after? In general, are there foods that you regularly consume that could be irritating your gut?
  • Are there foods you gorge yourself on frequently because of uncontrollable cravings?
  • have you consulted with a naturopath?
  • Where are the bone spurs on your spine? Thorax, facet joints,....?
  • Did you have abnormally frequent respiratory illnesses?
  • Are you sensitive to cold or heat?
  • Is your body temperature average, above average or below?
  • Do you normally feel cold-ish damp in your body or the opposite? Do foods effect those feelings and what are they?
  • Ever get a metallic taste in your mouth?
  • What symptoms did you already have before getting leg cramps? Do you get twitching and cramps in other body parts?
  • At what age did your fatigue begin and what environmental and occupational events occurred within the prior few years?
  • You were in a car accident over 30 years ago. Was that the source of your scoliosis?
  • Is the scoliosis also the place of your original back pain?
  • Is that where the spurring is?
  • Did you carry a large number of books to and from school in a bag with one shoulder strap?
  • What differences did the nutritional supplements make, if any? Doses, types and times of day.

You are from Brandon, Manitoba! A region with unusually high rates of MS symptoms and perhaps a basket case diagnosis. Maybe MS isn't high in that region but doctors in that region settle on it before something else due to local training and group think. I doubt that the genes in that area cause abnormally high rates of MS (same for a region in South America). It is sunny in Manitoba!! Hmmm... It is also a region with lots of water -- has lakes! Hmm... It has high occurrences of dangerous black moulds too! Hmm...

A doctor had given you a long questionnaire. Roughly how many questions was it and what kind of doctor was it?
Sorry, that is all I can think of right now. Perhaps it gets you thinking too.
HLA-B27 neg; Mis-diagnosed with fibromyalgia in mid-20s.
Vague AS symptoms in 20s and early 30s (no diagnosis).
During age 47 (2015) from NSAID use developed complete axial inflammation (started from from skull and progressed down to sacrum). Included psoriasis. Trigger in scull was reverse blockage in a SCUBA mishap in 2013. Straw that broke the camels back was over use of NSAIDs. NSD works well but not perfect. Strong involvement between symptoms and gut integrity.

#517813 - 11/12/17 04:13 AM Re: What do you feel I really have? [Re: Robin_H]
Robin_H Offline

Registered: 09/13/15
Posts: 253
Loc: Hubei, China
Oh, if you were off the drugs do you think deep sleeps could be restored? Deep sleep is critical in resetting pain signals and an overactive immune system that are driven by the CNS (spinal cord in particular). Or are there other issues you might consider like:

  • pain (I can sleep through pain)
  • mainly the medicines.
  • a possible metabolic imbalance due to
    • nutritional deficiencies
    • thyroid, adrenal issue or similar?
  • an unidentified microbe
  • a heavy metal toxicity or similar
HLA-B27 neg; Mis-diagnosed with fibromyalgia in mid-20s.
Vague AS symptoms in 20s and early 30s (no diagnosis).
During age 47 (2015) from NSAID use developed complete axial inflammation (started from from skull and progressed down to sacrum). Included psoriasis. Trigger in scull was reverse blockage in a SCUBA mishap in 2013. Straw that broke the camels back was over use of NSAIDs. NSD works well but not perfect. Strong involvement between symptoms and gut integrity.

#517814 - 11/12/17 04:32 AM Re: What do you feel I really have? [Re: Magician]
Frederick Online   content

Registered: 03/28/06
Posts: 265
Many of your symptoms are typical of A.S. but then they could just as easily be any number of other diseases. A.S. is notoriously difficult to diagnose and most sufferers have to wait several years for an accurate diagnosis. In my own case it took them some six years to find out what my problem is.

Do not put too much importance on HLA B27. It is a test that many rheumatologists don't take as much notice of as they once did. You can be HLA B27 negative but still have A.S. in the same way you can be positive but never have A.S. Much the same with X Rays as they rarely show much sign of A.S. till it is long term and advanced. An M.R.I. scan will show signs of A.S. before any X Ray ever did.

Psoriasis is one of those diseases that can be associated with A.S. but then again you can have psoriasis without having A.S. Has anyone suggested you see a dermatologist re. your psoriasis?

I see your point re. everything being blamed on your M.S. It is much the same with those diagnosed with A.S. as they and the medicos all too often blame every little ache and pain on their A.S.

Morning stiffness and an improvement after exercise is very typical A.S. and may be for the time being the best clue we have that A.S. is your problem.

Most A.S. sufferers (and possibly those with M.S.) take very many different medications and so sufferer as you do with bad sleeping patterns. It may take some time to find the medication that suits you best.

So very sorry that my reply may be of little help to you. All I can suggest is that you just have to be patient and accept that it will take time first to get the right diagnoses and then longer to find the best treatment for you. You may even have to accept that your rheumatologist is right and that you don't actually have A.S. Still that may be a good thing as surely having one chronic disease is better than having two.

Edited by Frederick (11/12/17 04:36 AM)

#517919 - 12/17/17 08:17 PM Re: What do you feel I really have? [Re: Magician]
rumble Offline

Registered: 01/31/09
Posts: 4489
Loc: NE Oklahoma

You've been here at KA for a long time and have been through a few different diagnoses from different doctors over those years. It's frustrating to watch you go through this, though I figure you are far more frustrated and disheartened by the struggle. Like is mentioned above, HLA-B27 is often heavily linked to AS, though it's just another marker in the body. The stuff on your elbow, if truly psoriasis, should give at least a passing consideration for PsA. No real B27 link to that one, though. Only symptoms and presence of psoriasis needed to have a doc call it PsA, it seems. And you seem to have a lot of those symptoms...morning stiffness, SI pain, etc.

None of my x-rays have shown abnormalities. My MRIs don't show much aside from a compression fx at T9 and some small spurs in cervical area and lumbar area. Maybe if they did those studies when I was actually having nerve pain down my arm to index and middle fingers, or sciatica nerve pain down my leg to lateral lower leg or into the big toe, instead of making me wait till insurance approved it and radiology could get me an appt (about a month waiting time). If I could get it when the pain was at the worst, maybe it would show where exactly the problem was at. Once it was determined that the 'rot' on my elbow skin was psoriasis and treated it (with a high-power steroid cream), the rheumy was willing to call my arthritis PsA, which allowed me to get biologics. He actually started calling it RA so he could get me started on Remicade, but it wouldn't have lasted because all those labs were negative. I was lucky. But I digress....

Obviously, you can't get imaged when it's flared up, so it isn't really showing the full picture. Someone is going to have to stick their neck out and treat you appropriately and see if that helps. What are the docs doing for the psoriasis on your elbows? If so, is it helping? Is that doc willing to stipulate to PsA? Would the rheumy stipulate that? It would be be an option for treatment that wasn't AS, since that seems to be something no one is willing to do. The MS is a complicating factor, for sure. Easy for them to blame it for whatever shows up in your spine, nerve-wise. Maybe the psoriasis would give them something else that couldn't be blamed on MS (or the meds for MS?).

In any case, I think I might lean toward it being PsA, because of your elbow 'stuff'. It sucks to not be treated effectively. I hope you can help them find an answer to this and get onto some treatment that works.
DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
Meds: MTX since Oct 2009, 15mg/week. Cimzia-restarted after 2 yrs away.
Epidural Steroid Injections x8; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x9

#517923 - 12/17/17 11:00 PM Re: What do you feel I really have? [Re: Magician]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 6035
Loc: Reno or SFLU Philippines

Hello, Magician:

You have "Magician's Pre-Ankylosing Spondylitis;" it will not show up on most methods of imaging. There are many Magician's unique issues (possibly "polypharmacy" also) overlaying the basic issue of AS--this is absolutely normal.

Psoriasis is common in AS--both kinds, really. Phantom pains all due to the basic inflammatory process.

MANY things can help AS but nothing as important as diet. The MS can and should be addressed separately; I am glad You are aware of this information.

MS should never be a "garbage diagnosis;" it is just too important because it can progress at different rates at varied times, and accelerate at a heartbreaking rate in certain individuals. I hope You can avoid this and unless they have found brain lesions, I just do not know if there are more definitive tests.

If You were my younger sister (okay--daughter...), I would tell You to do 2 weeks of leaky gut regimen (glutamine and butyric acid in addition to a lot of other supplements and specific foods) before going on an 11 day fast. Of course, I always have borage seed oil to deal with residual inflammation and especially antibiotics available to finish off those pesky germs and then begin with a clean slate.

Hope You can find relief soon,

Important AS Resources

Professor Ebringer: On Diet and AS;

RED ARROW --> Philippines

#517924 - 12/18/17 07:53 AM Re: What do you feel I really have? [Re: DragonSlayer]
Lon Offline

Registered: 09/11/01
Posts: 8373
Loc: Gillette, Wyoming
John thanks for h elping us see this thing through!
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.

#517925 - 12/18/17 08:09 AM Re: What do you feel I really have? [Re: Magician]
jay_bharat Offline

Registered: 12/08/08
Posts: 713
Loc: INDIA, Tamil Nadu
Hi Magician,

Sorry to note the problems faced by you.

I am also in a similar situation without knowing the proper diagnosis, after taking treatment for AS for 10 years.

Have you taken MRI. If then what was the impression. I understood through my search for The criteria for AS for a person with HLA B27 is sacroilitis in MRI.


#517926 - 12/18/17 10:00 AM Re: What do you feel I really have? [Re: Magician]
Kellybells Offline

Registered: 01/21/17
Posts: 119
Loc: Toronto, ON
Hi Magician, I'm so sorry. I can relate to your frustration. The rheumatologist told me I probably had fibromyalgia (I don't). Just about any symptom can be attributed to FM so I have no traction.

I don't have pain in my knuckles but I do in my finger joints. It's my most obvious symptom. I found my way here, tried the NSD, and succeeded beyond my wildest dreams. I concluded I must have some type of spondy. That was good enough for me, and I have given up on diagnosis.

To anyone struggling with diagnosis I would suggest trying a starch free diet for a month. If your pain and stiffness improve, then you likely have AS (or some type of spondy). It's not much fun but I do think it's a helpful diagnostic.
Suspected SpA. HLA B27, xray, u/sound, blood tests all -ve. Ancient history of plantar fasciitis, SI joint pain, knee arthritis. Recent history of tendinitis, neck pain, debilitating finger pain and stiffness (especially mornings). No diagnosis, no meds.

2010 - stopped eating dairy
2012 - stopped eating wheat
2014 - stopped eating all grains
Jan 2017 - discovered NSD - 98% improvement in symptoms, continually amazed by my results, wish I'd found kickAS sooner

#517928 - 12/18/17 07:38 PM Re: What do you feel I really have? [Re: Kellybells]
Robin_H Offline

Registered: 09/13/15
Posts: 253
Loc: Hubei, China
Magician, Is your AS really CIRS? (I think you and I have AS)

Recently I have been shifting my balance of hope and belief to that I have Chronic Inflammatory Response Syndrome (CIRS) as coined by Dr Ritchie Shoemaker with respect to mould illness typically caused by water damaged buildings or Sick Building Syndrome. Perhaps I am shifting because I have head symptoms that are not reported by others and CIRS seems more treatable/curable than AS. Also I really like to eat chocolate, cheese cake and banana bread! laugh

I have been hypothesizing that it is simply an accumulation of toxic exposures -- moulds and other microbes, heavy metals -- that is triggering my AS symptoms. Also, as time goes by the immune system becomes over reactive and over burdened; a burned out soldier.

AS and CIRS are both influenced by starch in the diet. Could some people here with AS (and no bone degradation in MRIs) really have CIRS? Could some people diagnosed with MS really have CIRS?

In the past few months EVERYTHING burns, crackles, stiffens and hurts. Muscle twitching and spasms. Brain fog.

Also, most nights I go through what I interpret and describe as a toxic response: oxygen craving, neurological pains and manifestations. What I have learned about CIRS seems to indicate that this toxic response can be stopped. Ans if that is the case then I might sleep again.

I have not slept more than 3 to 5 hours a night for the past year or more. I had doctors prescribe medicine to no effect. I tried melatonin and it makes me feel worse as if it is suppressing breathing. If I get a night of restorative sleep then the next day is much lower in inflammation, pain, brain fog and is very productive. But that is happening, at best once a month. Any suggestions??
HLA-B27 neg; Mis-diagnosed with fibromyalgia in mid-20s.
Vague AS symptoms in 20s and early 30s (no diagnosis).
During age 47 (2015) from NSAID use developed complete axial inflammation (started from from skull and progressed down to sacrum). Included psoriasis. Trigger in scull was reverse blockage in a SCUBA mishap in 2013. Straw that broke the camels back was over use of NSAIDs. NSD works well but not perfect. Strong involvement between symptoms and gut integrity.

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