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Lots of History… Diagnostic Frustrations

Hello all. I hope you’re all well.

The ‘speculative diagnosis’ made by a dermatologist has led to the genetic test for the HLA B27 gene.

So, it’s very recent that I’ve opened this entirely new book relating to Psoriatic Arthritis and Ankylosing Spondylitis. I’ve basically done one thing for the last four years… Okay maybe two: 1. Read medical text/study data 2. Have surgeries.

I have some very specific questions, but I have not previously inquired through any community forum platforms, because I, basically, prefer to read textbooks and scientific study data. You see, I’m a huge nerd… Who also races trucks (in the past), teaches skiing (past), plays sports (past), travels 60% of the year (past), works for a Fortune 50 company (past), moves cross-country (6 states in 8 years), engaged (cancelled)… So, I think you all probably understand what I mean by, “My Life… Has changed”.

Below, I’ve put a few of my thoughts, in “quotes” that have arisen throughout this incredibly tough people of my life.

I am Michael. I am 31 years old.

“Can the two groups of symptoms, Musculoskeletal and Dermatologic, really be mutually exclusive? They seem to be very cyclical and of an associated nature.”

“When I say it feels *Like* something is crawling on or in my skin, my use of the word *Like* means that my comparison is simile.”

“I know that it looks fine right now; I’ve already told you that the symptoms have, as usual, cleared up in the time that it took to get an appointment.”

Now, before I give some detail on the extent of these conditions, I wanted to be clear that it’s obvious that much physical trauma has been the cause of some or perhaps much of the damage that’s been done.

My reason for writing this is because I wonder about the relevance of this genetic test for HLA B27… If they don’t find this gene, does that mean the diagnosis is invalidated?

The piece of the story that’s not included above or below, is the misery of another associated condition called temporal or giant cell arteritis… It feels *Like* a drop of water trickling across my skin from the top of my ear to the corner of my jaw, or from eyebrow to ear… Over and Over and Over and… You get it.

Finally, my greatest curiosity is how the suspected exposure to mold could have initiated, exacerbated, or accelerated the development of these conditions.

Finally, I’m curious how much effort it took for those of you with the less obvious dermatological symptoms to discover what ails you.

Surgical History:

(21 years old)

2009 – Appendectomy

2010 – Rotator Cuff (R-Shldr)

(27 years old)

2015 – Splenic Arterial Embolization to stop internal bleeding. Partial splenectomy. Removal of approximately 1.4 Liters of blood from the abdomen.

2016 – Sinus Therapeutic – Following broken bones in cheek/nose which contributed to the breakdown of septal cartilage.

June ’18 – Sinus Surgery – Found benign myoepithelioma tumor

July ’18 – Hip (R) – Femero Acetabular Impingement (FAI) and signicficang Osteoarthritis – Large boney deformation of pelvis and femoral head-neck junction; 50mm flap of cartilage torn and 35% loss of articular cartilage (% of whole socket).

Dec. ’18 – Three level – Anterior Cervical Discectomy and Fusion *ACDF (C4-5-6-7) – Cervical spondylosis, osteophyte complex growth, three “obliterated” discs

I’ve also been getting, for 2-3 years, corticosteroid injections in my left shoulder – AC joint and CT-guided epidural injections at paracentral herniations of L4-5-S1. My left hip is on it’s way to needing repair/replacement in the next 5 years. And the one that was repaired already will require replacement in 3-6 years.

I have a cyclical recurring psoriasiform dermititis involving the webbing between fingers, thickening of toenails, ~2-3″ subtle, irregularly shaped “arms rash”, jaw (see below), ears, and scalp. Onset of symptoms followed the beginning of my major joint problems at age 27.

Over the past two years, there have been three occasions of Alveolar Bone Loss, with large boney shards excreted through the gums. I have healthy teeth and gums otherwise.

Does this all seem like it could possibly be the work of this disease.

How’s this going to progress? I mean, I know I’m kind of screwed, but that’s not a very optimistic perspective to take.

Again, hope you’re all doing well with your health, comfort, and… sanity.

Thanks All.
Michael

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The PlaquePsoriasis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Kris
    4 weeks ago

    Sure hope you find some relief. I have the arthritis but not to the point of surgery, however, I do feel my multiple abdominal surgeries due to adhesions is this disease also. Alas! I know that moving drip feeling, that might be your trigeminal (sp. sorry) nerve. I have it in my leg (nerve damage).

  • Kris
    4 weeks ago

    I’m having more lab tests today as my symptoms have all flared again last night. The concern is that I have had TB, Valley Fever, and possibly Lyme. I may not be able to take medication. My joint pain is so uncomfortable. I refuse to take narcotics but have taken Kratom for 3 years.

  • CathyD moderator
    2 months ago

    @mn4-michael, I totally relate to the symptoms clearing up just as your appointment comes around – so frustrating!!! One thing I found helpful is to take photos of anything and everything visible that pops up, then at least I have something to show at my appointment.

    I was able to find some information on the HLA B27 test (and some others) over on AnkylosingSpondylitis.net: https://ankylosingspondylitis.net/diagnosis/understanding-results/ As I’m sure you’ve read by now during your research, whilst the HLA B27 gene increases the risk of several rheumatic diseases, not everyone with HLA B27 will develop one. Likewise, not everyone with AS/PsA will have the gene.

    Do you know when your test results are due back? -Catherine, Community Moderator

  • VickiN moderator
    2 months ago

    @mn4-michael, I appreciate you taking the time to share with us! Where’s your favourite place to do research? I like PubMed.
    -Victoria, Community Moderator

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