feel so unwell

[gwenllian111]

Hi guys
Just to update you, I saw Rheum today and they think I have Relapsing Polychondritis as well now, which as I understand, is where the joints and cartalidge is affected too. Increased steroids, same medicinal routine as WG. Another branch of the same tree I think X

[RCOSSIO]

GEE....another AI disease, isn't WG enough. Talk about being in a household with a bad marriage, WG and Polychondritis. I hope you get BETTER, GWEN!

[Chris G]

What are your RP symptoms Gwen? My diagnosis was up in the air for a while.....between RP and WG. Many of the symptoms are the same. But I never had an external ear flare, and they ran 2 Collagen II antibody tests on me. They were both negative. The weird thing is that when my wg flares, I often get costochondritis along with it.

[Sangye]

So sorry, Gwen. What is the prognosis for RP now? I know a few years ago it was not as good as for Wegs.

[gwenllian111]

My symptoms Chris was a weird hearing loss in my left ear (not external) but the eustacian tube didn't react normally. Also, the extreme joint pain and fatigue. Definately new for WG, but I suppose all symptoms are interrelated in a way anyway aren't they?

To be honest, my Rheum doctor hasn't said much to me about it - he's a very hard man to read, and he just says it as it is.

I have no idea about prognosis or anything. I've just been so tired, i've barely been doing anything. I worry about the effect I have on my husband (I don't want him to be a carer ) and my children, who are so used to their mummy having a nap for most of the day. Really horrible. This isn't the life I wanted to have lead, but having said that there are people out there who have it SOOOOO much worse. X

[gwenllian111]

The only thing I wanted to mention (that may help others???) was that whenever I had surgery on my stenosis, the pain post op was horrendous and no one knew why it was so bad.... now it seems it could be that the cartilidge in the stenosis area became very inflammed afterwards. ?

[Chris G]

Oh Gwen I'm so sorry you're feeling so poorly. What does your doctor plan to DO about it? Is there a plan yet?

I wanted to add more regarding RP/WG. While the ear a joint pain symptoms may be new to you, what you describe - both ear and joints - are not at all unusual for WG. Unless there are other symptoms, I'm not sure why your doctor is now leaning toward RP. Has he/she tested you for collegen II antibodies? It seems more like your WG is just traveling to new areas in your body. I myself have never had joint pain, but I suspect at some point down the road that I could develop it.

However, eustachain tube dysfunction was one of my very first WG sypmtoms, and it's the most consistent symptom I have. It occurred with both of the most recent flares I've had in the past couple of years. By the time I was diagnosed in November, my ear and mastoids were so filled with fluid, that my ear drum burst. The pain from the pressure in the mastoid (and I believe spasms in the eustachian tube) was the most excrucuating pain I've ever felt (yep, right up there with child birth), and it lasted for over 5 days. I lost hearing in that ear for a couple of months, but luckily it has returned to normal since then.

Have you seen an ENT regarding your ear? Clearly I'm not a doctor, but I know now, that if I'd let them place an ear tube in my WG ear (prior to diagnosis), I could have avoided the horrible ear infection and the pain that followed. This seems especially important in your case, if they do not yet have a treatment plan lined up for you. Please pursue this as soon as possible.

I'm sorry I don't have words to comfort you about your family. I've felt the same guilt many times. My boys are 9 and 11, and feel like I've missed out on a lot with them. Where's mom? She's laying down.....again. And now that I'm finally feeling better, I was thinking perhaps I'll volunteer more at school this year. Oh, but wait......I have to worry about my immune system being supressed!!!

I hope that you will press your docs for a treatment plan, and see an ENT soon. Hugs to you.

[Sangye]

I am so sad for those of you with kids. Nothing I have experienced can even come close to that kind of pain.

[gwenllian111]

Yes i was seen by ENT yesterday. He said my ear eustacian tube didn't look inflammed (wg) but flat - so when he went to discuss with my Rheum, they came up with this other potential diagnosis (need biopsy to confirm apparently).

Still, i'm so anxious about it - have no idea what this means.

Meanwhile, still struggling with pain and this annoying dry cough where I have coughing attacks (lying down) and coughing up green plugs (sorry tmi). Not like sputum, but proper green plugs. Horrible!

Keep dreading the next hospital admission, or am I just being paranoid?