Just joined today. Maybe just to vent till I know more. Tommorrow I see a Dematoligist, (the 6th doctor in 2mos) for what's been described as a Triad. (Rhinosinusitis, Staff and Impantigo) It's around my mouth and nose. The thing is I've taken pictures over the last 12 weeks and this SMACKS of Sclerodrma. Symptoms are rotative and wax and wain but every inch of my face, nostrils and inside my mouth are somehow effected and documentable with pictures, treatments, side effects to treatments and alternative treatments. I don't look like my self from 2 years ago. My entire body has caught up with my facial deterioration so it's time to find a team of diagnostic specialists for treatment that my Medicare CMO will cover. There's the ultimate challenge... Rochester Mayo has diagnostic available but I'll need to get a referral and see if Mayo's in network...Ufda!!! My visable, facial symptoms currently being treated are known to respond well for the first 24 hours and then BAM!! the cells quadruplicate 10 fold and it comes back raging. I read 3 studies not from the US ...They could add another non-penicillin antibiotic to broaden the effectiveness and allow for transition to long term use, but that proved to also have a bounce back side effect and could leave me resistant. So far I have what's called saliva plaque on the corners of my mouth which is shrinking and rips if I even yawn. Brushing and flossing is tricky. I bite the inside of my swollen, cracked, pealing and now purple very sore lips. Eating is hard, like I have novacane. There's a new cobbled, waxy, onion peal texture to my face but thickened in area of cartilage like my nostrils, chin and eye brows, which are gone, are heavily shrouded. My lips are thin when not swollen and now have a snarl. The bridge of my nose has shrunken, also hardened, which constricts air flow and I'm chronically stuffed up. The sides of my face by my ears is tender. Most of my face is burning, inchy, prickly and pulsates with nerve pain... I'm not expecting miracles from my appointment just validation...
P.S. It's been suggested that addressing food sensitivities, poor gut health, digestion and lack of proper absorption could greatly improve alot of these symptoms. That's my fall back plan...either way...Hope to keep you informed.
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jamiB
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Firstly, great to hear from you and welcome aboard!
Gosh, sounds like a bit of a vent might have been needed. Hope it helped. It often does if, like you have done, directed it the right way by getting some thoughts down. Rather than unproductive, it can be quite therapeutic, and can be a good record keep for the future, just in case you should need or find useful a record of how you were feeling at the time.
It must be highly frustrating if you are in a state of permanent discomfort, or even pain. All most people would want then is some explanation of the cause.
That then gives you the plan for treatment and fixing it.
I can't obviously say whether this is Scleroderma or not, but you are just a short time away from seeing someone who can tell you more. I'm working with Dermatologists now, but I will say that they see many things, and not always know for sure what they are.
So, lets hope that they can you the diagnosis you want, but you hinted at a Plan B. Well I think that is just plain good thinking, IF they can't say immediately what it is (my Dermatologists can't say what my lump is for example) then the bit you want is getting whatever condition it is to a manageable level, UNTIL you get the diagnosis. Yes, ideally, diagnosis first, but things may not turn out that way.
So I wish you all the very best. Firstly, I hope your healthcare providers can get you comfortable on a ongoing basis. And when able, I hope you get the diagnosis. But do remember two things here.
Calling it Scleroderma is just a label. HOW YOU FEEL is more important to me. That said, ** it is perfectly valid ** to say if you aren't comfortable right now (just who exactly thinks it wouldn't be? Oh yes, people who don't experience these issues like you do!)
And the second thing is that we are always here if you need us, Do let us know how you get on.
• in reply to
An Additional thought re "labels". My lump ..... Doctors have wondered whether it is a pilar cyst (nope!) and Trichilemmal cyst (maybe), a lipoma, a cylindroma or just a plain tumour,
In the end, none of these change the fact that I'm temporarily stuck with it, and my biggest issue is not not knowing what it is, but that it makes sleep hard.
I've started calling it Bob (apologies to any Bob's out there!). In the end, to me, the practical effect of it is harder than whatever word I use to call it. And in time, Doctors will remove it.
Everyone is different though, so when it comes to labels, then the ability to listen to your own thinking about what you need and how you feel is a good one to have,
First off, I love that you got back to me in support as well as reassurance. Thanx for that...The other thing...I have this backround in healing which stems from my nurse mother of 10 kids. We did ALL our doctoring at home. I'm newly retired after 40 years of disabled adult in home foster care. I've spent a good amount of time in front of doctors with my clients.Most were mental health with a chronic, underlying somatic symptoms. I decided early on that self care would be my only survival as my personal time for doctors appointments was limited. Over the years I've used Tai Chi, Chi Gong, Ti Chi Chen, Acupuncture, Chinese medicine, Infired, Negative Ion, Electomagnetics and am certified for Reiki. I do meditation, Reiki, yoga and Calesthetics for 2hours mist days...I think this has kept my symptoms at bay until the facial flare up so I plan to up my game nutrition wise and reevaluate toxic exposures to chemicals, etc.
Most important, for me anyway, is to make piece with this experience and work with it rather than fight it. Maybe we achieve the most as a result of conflict or contrast...other wise we'd just be complacent. The GOOD fight, if you will!
P.S. 20 years ago my daughter came home from College with Mononucleosis.
She also had gofball size, hard knots on the back of her skull. They diagnosised them as possible cysts. but they never broke open or oozed. They did clear up though. Always wondered if it was a similar thing to shingles, herpes zoster or a strain of parvovirus which lays latent in the spine and have had family members who've tested positive for all the above after my insistence. ( I threatened to call the CDC if they didn't do bloodwork for Parvo when my daughter was admitted twice to the ER in one day. I also insisted a case worker be present as a witness as I needed to play the mom card.)
Whoa! She sounds formidable! A nurse mother with 10 kids?! Holy cow, she is no mean trifle and to be respected!
sounds like you have had a lot of contact with the medical profession over the years,and not always helpful.
I think you are doing yourself favours with the tools you've mentioned, the Reiki, Yoga etc. Anything that supports your physical fitness and well being is just so good.
One tip I will share with you though comes from my IT work. We struggle, I mean **STRUGGLE** to teach people the art of troubleshooting. And diagnosis, while more complex, is the same art.
If you are trying to see what works, then change only one thing at a time, and keep everything else constant for a month (CAVEATS! Unless your medical professional gives you specific instructions ....)
The reason for this is it gives you time to evaluate what effect (if any) your change had. If you for instance, gave up meat and alcohol at the same time, but saw an improvement in a condition, you would not be certain whether that was due to cutting out the Meat, or the Merlot! When you only cut out one or the other, then the benefit is easier to apportion.
Exposure to chemicals is possibly *REALLY* hard to decipher. There is so much which is chemical. water technically is chemical (its often forgotten or not realised that water is Dihydrogen Monoxide. Put that way, it sounds scary stuff!)
So again, change the least possible and give it time, which I grant must be hard if not comfortable.
Looking forward to hearing your updates, and good luck with whatever you try. But whatever, keep your medical pro in the loop, and the more your log, then the more evidence you have of what works and what does not. Use your diary wisely!
Thank you for your post and for sharing about your situation and experiences on here. It sounds like things have been tough for you in terms of finding a diagnosis and managing not only changes to your appearance but also pain and difficulties eating and doing things like brushing your teeth.
I hope the appointment you had was helpful, it sounds like you had given thought to what your expectations were for the appointment ahead of time, and done research on possible medical conditions and treatments options you could be discussed. Being informed, monitoring your symptoms and collecting evidence can all be great tools in navigating a difficult health care system.
It can hear you have considered how important self-care and things like good nutrition and exercise can be for your health which sounds really positive. I hope you find this a helpful place to connect with others and receive support and please do keep in touch to let us know how things progress.
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