Presentation and help – Not diagnosed yet

[Robbie]

Hi everybody,

I’m Roberto, 31yo from Italy.
Life was going quite well for me: a good job, some girl to make life happier (still single by the way), healty life (I used to be part of a swimming team), good italian food… When suddenly my health issues crashed in to my life out of the blue.

In december 2014 I’ve been diagnosed with testicular cancer, luckily caught early and properly treated (radical orchiectomy, plus one single preventive shot of chemo).

At the beginning of the summer 2015, when I was mostly convinced that my life was turning the same as before, I started noticing a bunch of symptoms that I related to a connective tissue disease. Some of them were here for years, but just now I’ve started to see them inside a bigger picture:

• from more and less 10 years I’m suffering from Raynaud’s. A mild form that occurs mostly in winter or mid seasons when I get cold in my body and just in the late afternoon/evening. It involves hands and/or feet but never bring me to have ulcers or similars. In the last two years it became more frequent (almost on daily basis when cold).
• since december 2014, I’ve started to suffer from a strange sensation in my throat. A sort of complaint in breathing that I realize being connected to what and how much I eat and that mostly disappear with a proton pump inibitor (or with proper diet, that I prefere).
• since june 2015, I’ve started to suffer from mild joint pain. Not invalidant at all, but clearly present and that comes and goes here and there in my body. Some minutes in a knee, after ten minute in a finger, and then in a feet thumb and so on. I don’t notice any swelling in the joints, but I clearly see some redness in my knuckles expecially with heat/sun exposure
• since june 2015, I’ve started to be mildly heat/sun intolerant… I see my forearms and hands veins bulging like never before, my skin become mildly itchy and tingling and I can see a diffuse veeeeery mild redness and some spots a little more red here and there in hands and forearms. After heat/sun exposure the feeling lasts for a couple of hours and then disappears.
• since june 2015, but probably it started before, just I didn’t notice. My hand palms when it’s hot, after some phisical activity or after eating something hot or sometimes just when I keep my arms along the body (with me standing up of course) turn red. Fingertips are ever more reddish than the rest of the hand most of the time.
• since I-don’t-know-when, the skin between my fingernail and first knuckle became shiny and it seems thinner than the rest of the hand skin. It seems like a sheet of cellophane.

I’ve been to a rheumy that ordered a blood test (sort out that I have slightly elevated ANA, 1:80) a photoplethysmography (I get no raynaud although my hands were sunk in cold water, but came out that my capillaries are not so adapting to temperature changes: acrocyanotic syndrome compatibile), I’m waiting to get a capillaroscopy this friday and then the visit with the rheumy again.

That’s all… I don’t know what to think if not that I’m scared like hell and I hope that also in my country I could face effectively with AP any disease it will reveal to be.

So guys… What’s you opinion about?

[richie]

Hi It sounds like many of my early symptoms –I had diffuse scleroderma —A simple nail fold capillary test will confirm collagen vascular disease –
Richie

[Robbie]

@richie wrote:

Hi It sounds like many of my early symptoms –I had diffuse scleroderma —A simple nail fold capillary test will confirm collagen vascular disease –
Richie

What mostly puzzle me it’s the photosensitivity… It doesn’t seem like a manual book scleroderma symptom.

I just want to address my situation asap, when it is in its beginning and hoping that AP could be properly available here in Italy and as effective as it seems to be to many of you.

[lynnie_sydney]

Robbie
Have you requested/received a list of AP docs? There are two that I know we have listed for Italy

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Robbie]

@lynnie_sydney wrote:

Robbie
Have you requested/received a list of AP docs? There are two that I know we have listed for Italy

Just the one from Pesaro. If you have a fresher list I would be very happy to receive it.
BTW I’ll wait till my tomorrow visit with rheumatologist.

Thanks in advance.

[pierlunico1]

Ciao, sono Pierluigi, scusa il ritardo, ma sono rientrato oggi e sto via via guardando la posta. Non so se vedrai questo messaggio perch

[Author]

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