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Still no official diagnosis, but I've still only seen the one rheumatologist about it the one time in October. Her attitude was to wait and let the RP specialist do the diagnosing, but my appt with the RP specialist isn't until the end of February (she only sees patients 1 day a week due to...

I finally got around to creating an imgur account so I can post some photos of my own outward Relapsing Polychondritis symptoms. I'm doing so in case someone in the future stumbles upon this post and says..."Hey that looks like what I have!". There really not very flattering ;) (though I must...

It seems we might not really know the answer to that question in regards to MS. Here is an excerpt from a 2014 post by a PhD with MS discussing this issue. (I've added a link to the post also). "Now, I’m not sure I can trust even basic activity like walking not to hurt me more than it helps...

Biotin Supplements Can Interfere With Cardiac Troponin Tests: One person died after excessive levels of biotin, also known as vitamin B7, skewed their troponin test results, according to the FDA. The US Food and Drug Administration (FDA) is warning physicians and other healthcare...

There seem to be a lot of people in the Relapsing Polychondritis forum that also have POTS, OI, or OI/POTS-like symptoms. This makes me wonder if this these types of symptoms are something that tend to be seen in any disease group where severe fatigue is involved? I imagine de-conditioning and...

@Justy There are a few different possibilities that could explain why the 2 labs are getting different ANA results. " The antinuclear antibody test is performed with different techniques in different laboratories; some techniques are more sensitive than others, such that one laboratory may find...

Yes it is not something that happens to all patients with RP. It's estimated that around 50% of RP patients have laryngotracheal involvement and not all of these people end up needing a tracheostomy, but it always remains a risk for anyone with RP and involvement in this area of the body. Many...

Yes I knew ahead of time about the possibility of the steroids causing me insomnia and I was thrilled when I ended up having no problems sleeping while taking it. I hope the same holds true if I have to take a larger dose than what I took. As for how methylprednisolone (Medrol) differs from...

PART 3 I became aware that there is a known rheumatologist who specializes in relapsing polychondritis and RP research (Dr. B) here in my state at the same hospital where my neurologist is. When I called to see if she was accepting new patients I was told she was, but that it would be a 5 month...

@Woolie Yes unfortunately the treatment for relapsing polychondritis comes with it's own set of difficulties, and possible problems, but it's a disease that must be adequately controlled given it's progressive, and potentially fatal nature. There are people younger than me with the disease who...

Yes and while I have been accepting of my ME/CFS diagnosis as it was the best fit (until recently of course) I kept myself open to the possibility that it could ultimately turn out to be something else and not ME/CFS after all. I think there is a danger in people blaming all symptoms on ME/CFS...

What is Relapsing Polychondritis (RP)? Relapsing polychondritis (RP) is a rare multisystemic autoimmune disease characterized by recurrent inflammation of cartilaginous and noncartilaginous tissue. The course of the disease is episodic and progressive affecting various organs in the body...

PART 2 On September 25th I woke up to find my right eye was red, irritated, and painful. These symptoms lasted almost 2 weeks. Then on October 7th I woke up with pain, redness, and swelling on the right side of the bridge of my nose. It was very painful, and felt as if someone had hit me over...

PART 1 Here is a run down of what's been going on with me.... In January of this year I traveled to see Dr. Chheda at Open Medicine Clinic. She had me try taking Ultra Low Dose Naltrexone, but I had a very bad reaction to it after just 1 dose and had to stop taking it immediately. She then had...

This is an article that I often see suggested in online support groups that is about Small Fiber Neuropathy. It's a good resource. http://www.mdedge.com/ccjm/article/95083/diabetes/small-fiber-neuropathy-burning-problem I was diagnosed with Small Fiber Neuropathy (SFN) in September by my...

My husband was prescribed a round of antibiotics for a puncture wound last month and it caused him to suddenly develop horrible halitosis (wicked bad breath). He and I both were freaked out at the prospect of his breath staying like that forever. We decided to start by seeing what would happen...

With regard to the Rituximab studies, the researchers knew they were using the real deal because they tracked B-cell depletion, etc of patients.

In regards to DSPD/DSPS... DSPS is diagnosed based solely on a description of the symptoms and sleep logs. Sometimes a non-invasive wrist-watch-like device called an autograph may be used to confirm rest-activity rhythms. An overnight sleep study (polysomnogram) may be recommended to rule out...

In regards to Non-24... Polysomnography is not required for the diagnosis of non-24 per se, as it is the timing rather than the quality of sleep that is primarily impaired (although some patients may show alpha intrusions and reduced delta sleep). It is mainly of use in differentiating non-24...

What is Delayed Sleep Phase Disorder? Delayed Sleep Phase Disorder (DSPD), also known as Delayed Sleep Phase Syndrome (DSPS). Does it have other names? The official designation according to the current International Classification of Sleep Disorders (ICSD-3, published in 2014) is Delayed...