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

Registered: 09/21/09
Posts: 1238
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: http://www.ebrandon.ca/profile_blog.aspx?person_id=1051#1688

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

Registered: 09/13/15
Posts: 87
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.

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

Registered: 09/13/15
Posts: 87
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.

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

Registered: 03/28/06
Posts: 156
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)

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