New member recently diagnosed

[kaz03]

Hey everyone,
How are you all?

I have my rheumatology appointment through, they want to see me on the 1st march so not long at all.

[Carolina]

Dear Kaz,

I remember waiting eagerly for an appointment with a rheumatologist.  My first one about 14 years ago, was wonderful.  SHE was wonderful. 

When I didn't have the 'blood work' for Sjogren's, she said the wasn't important, just treat the symptoms and wait, something will turn up in tests perhaps.

Then I moved away and the next rheumatologist  wasn't wonderful at all.  She dismissed me because I didn't have 'confirming blood work'.  t was in the midst of a major health crisis that just kept escalating, and when she couldn't help, I just put her in the 'delete file' and moved on.

We moved AGAIN and my third rheumatologist found my Primary Immune Deficiency Disorder,, which is the underlying problem with my health, and has been all of my life.  I still didn't have confirming blood work for Sjogren's, but continued to manage it was Salagen, OTC sprays, and pain meds.

This rheumatologist left her practice with Duke, after two years, but by then I had found a marvelous Duke Immunologist and now I am in good hands.

HOWEVER,  I still have a large number of conditions which cannot be cured or really treated directly.  I can only manage my symptoms.

I don't actually HAVE a rheumatologist.  I see a Duke Rheumatologist Nurse Practitioner who manages my RX for Salagen.  And that's enough.

Just follow all the advice you've been given ( ) and you'll do fine.  But remember, doctors can be our allies, but in the final analysis, our health is in our own hands.

Hugs,  Elaine

[kaz03]

Hey guys hope you're all OK.

I've beenreferred back to ent as rheumatology don't think they can help me. From his notes I am anti ro  positive however he thinks this is an innocent bystander. He however did warn before I left that mothers with anti ro  can have babies with congenital heart block. Nice note to leave on 

I have my blood work results from November and 2 weeks ago but the abbreviations mean nothing to me....any drs in the house? Lol

So back to the waiting game of referral back to ent.

He has/said in his notes he thinks I have something called polychondritis....

[mike]

So he said he believes you have Relapsing Polychondritis is that correct?

If so do you have the classic outer ear inflammation, or changes to the bridge of your nose?

Have you had an MRI of the trachea and larynx?

[kaz03]

His words are ' I did wonder if she could have something like polychondritis, hence I felt the trachea, ears and nose. Obviously direct visualization would be helpful"

Nothing wrong with my ears and nose apart from occasional vertigo.

I've never had an MRI. Ent did put the camera down my nose and they said my larynx was red but OK.....though after talking to me she had to recheck because my voice during an attack is very hoarse.

[Carolina]

Most of the time my voice is very hoarse.  That's the Sjogren's Type Syndrome that I have.

Hugs,  Elaine

[mike]

kaz03

RPC is quite rare and it is normal practice to order an MRI to look for specific feature changes in the larynx and trachea.  An ENT can order an MRI but the management of RPC patients is the responsibility of a Rheumatologist.

Most patients with RPC do present with the classic ear and nose involvement, but some do not.

RPC is difficult to diagnose because it tends to be episodic and lays down a new layer of damage on each reoccurrence and it may take some considerable time for a physician to recognise it.  It is not uncommon for patients to present to an ER several times with respiratory problems before someone recognises the need to diagnose the underlying problem rather than just treating the immediate symptoms.

Whilst frustrating, you may for a period of time be considered to have an undifferentiated connective tissue disease and if that is the case the most important thing to do is 'fly the plane'.   That is make sure each of your specific health issues are being addressed in a timely manner rather than becoming too caught up in getting a differentiated diagnosis.

[SjoDry]

Hi Kaz03,

I would agree with Mike regarding not getting too hung up on the diagnosis. For the longest period of time, I was obsessing about which symptom is being caused from which diagnosis (I have a severe immune deficiency CVID & Sjogren's with some cross-over RA symptomology).

What I figured out, is that I am unlikely to ever know because both of my diagnoses can cause similar symptoms. So the bottom line is to treat symptoms.

I also have lung involvement with random pain and shortness of breath after exertion. Is it Sjogren's? Is it the Bronchiectasis that I got as a kid from my CVID ( in which I had the lower 2/3 of my right lung removed)... who knows?

It can be very challenging to figure out. I have learned a huge amount about doctors throughout my years & years of looking for answers. Many or most of us have been told/accused or had it insinuated that we are hypochondriacs, cyber-chondriacs or just plain neurotic.  You may have to dissect and/or delete a few sub-par doc's along your way. But there are some amazing doc's as well. It has taken me years to put together my "dream team".

I wish you luck and hope you get some clear answers..sooner than later.
It's a journey for sure.
Take care.
SjoDry

[Jonchri]

Hi kaz. I developed a bad cough several months ago which has progressively gotten worse. It is totally dry and not really in my throat. I have some difficulty breathing and occasional pain. I haven't talked to my rheumy about it yet because I have been overwhelmed with seizures and other symptoms and sometimes fear all the symptoms will make the doc not believe me. So he really only knows about half.
I did ask him though if it was SS which has made me have difficulty breathing after eating or drinking anything really cold (like with ice or frozen). He said absolutely, if the bronchi is already damaged or sensitive from over dryness, the cold can constrict the bronchi even more, causing mild to severe coughing fits.

[kaz03]

Thankyou everyone.
What bothers me most is none of them are trying to treat my symptoms. It seems they're just plucking names out of the air as possible diagnoses. Which is fine, but adleast try to treat something. In just 6 months I've seen a cardio specialist, ENT, respiratory and rheumatology. And although I know its good I've seen so many different drs so quickly it doiesnt feel like asny of them are actually getting to know me or what's wrong with me. They see me once and pass me to someone else. How is anyone gping to get to the bottom of it like that? I get they may never know what i have but surely if they think inside the box and give me something to try and treat it, who knows, whatever they give might just work!

I had a very sore throat last week and lost my voice. It felt nothing like losing my voice when i get wjatever it is i have, then i feel like i cant get the air out of my lungs and i really struggle to get any noise out through lack of air.....it was weirdly nice having tge comparison as ive never lost my voice before i fell ill.

Im still awaiting my next appointment letter.

Thabnkyou again for all the replies. Abd taking the vtime to read my ramblings despite being so poorly yourselves.

Hugs xx

[Lindabridge]

When you visit your rheumatologist, ask to be evaluated for relapsing polychondritis, among other autoimmune disorders.  Sometimes, it presents with breathing difficulties because it affects areas that are made of cartilage, such  as the trachea, larynx, etc.

Best of luck to you.

[irish]

kaz, Forgive me if I missed something in these posts. I attempted to read them all. You have an interesting situation. When going through your symptoms the first thing that came to my mind is if anyone has ever checked you for gastric reflux. This can cause the swelling and inflammation of the larynx and can also result in some aspiration which would precipitate coughing and shortness of breath due to bronchial spasms resulting in decreased peak flows.

Also, have you had your TSH checked? People with thyroid disease/Hashimotos can also have swelling and redness of the larynx due to the antibodies and inflammatory attack on the body. Thyroid issues can affect breathing and cause hoarseness. This condition that you have is very tricky and even though you are sick of all the specialists all the information they are collecting may well be what clenches the diagnosis eventually.

Have you had swelling and redness of your ears? This is common in RP also. I had this problem a lot years ago and I was being watched for the RP but nothing further showed up. My ENT has been checking me for a lot of stuff over the years. The doctors get so frustrated when they can't find anything with all the tests. My ENT also gets discouraged because he can't come up with much to help all my symptoms. It is sort of a shot in the dark to see what will work.

Just keep positive and keep researching and the day will come when your will get a diagnosis. Just to let you know I was sick with autoimmune including Sjogrens for 39 years before I got diagnosed. Good luck. irish