More medical issues...and finally a cause

[robint]

So many of you may remember that just 8 months ago I was diagnosed with mitral valve prolapse. I had open heart surgery to repair the valve and was cleared to dive in June. I went on a fantastic Roatan trip, did dive with no issues, and thought that all was resolved. In July my knees started to swell again out of the blue.

Previous to this heart issue, I had battled swollen knees off and on for 20 years. I had been a jock in hs and college, so doctors always attributed it to those injuries. I had also had numerous unexplained bad rashes, shingles while pregnant, and a pregnancy from hell where I was covered with rashes, and 3 subsequent miscarriages. Five years ago I was diagnosed with uterine cancer, had successful surgery. Once again that doctor had no reason why I got it as I am only in my 50s and not obese. Last year also I was diagnosed with some strange bony growths on my spine which one doc said was osteopetrosis "bone death" issue. No cause for any of this according to my doctor. Then I got a benign growth on my thyroid, was diagnosed as slightly hypothyroid and now on meds for that. All the while, my knees would suddenly swell up like balloons, cause me outrageous difficulty, then suddenly go down several weeks later.
None of my doctors have every linked any of these problems over the past 25 years..... until now.

I have now been diagnosed with Lupus, SLE. Ding, ding, ding. My doctor says every one of these medical issues points directly at lupus. This is all still evolving, lots of blood tests and stuff.... but I now truly believe we are onto something. I feel hopeful.

I just thought I would share all this with everyone.... especially the doctors here on SB. It is so important to not spend so much time focusing on just your specific area of specialty.... LOOK AT EVERYTHING. I wish someone had diagnosed this sooner, it may have saved me and my family great worry and my surgeries. My Rheumatologist believes that it is unfortunate no one put it together til now, but it is the disease that gets overlooked as can hit all parts of a patient's body with what seems like totally unconnected problems.

I am guessing my diving days are over now. As someone else said here on SB = diving is optional, living is mandatory.

robin

 

[Jim-SAR]

Robin - I wish you the best of luck with all of this. You've definitely been down a hard road getting to the diagnosis point. At least you know what it is now.

About 2-1/2 weeks ago, I walked into the ER with some "discomfort" in my chest. Due to not having a spleen from a motorcycle wreck two years ago, I though maybe it was an infection begining to get out of control in my lungs. Come to find out, I had a 100% blockage in my right coronary artery, and had been having a heart attack. They flew me to another hospital and I got a stent put in, so now I'm on the road to recovery. Cardiac rehab started today. At 47 years old, this is way too damn early. My hereditary issues didn't give the warning signs like others get.

 

[Duke Dive Medicine]

Wow. How frustrating to go through all that. I'm glad you finally have a diagnosis.

Best regards,
DDM

 

[chillyinCanada]

I hear this so often from people that finally get the Lupus diagnosis. I hope you can find some comfort in "knowing".

 

[robint]

Thanks everybody. Yes, at least we KNOW now. My husband is not taking the news well. We had thought that the heart surgery would put me right back into diving, which it did, but now ??? He is angry, to say the least. Staying out of the sun is now a huge priority for me and diving is the least of my concerns.

 

[Diver0001]

I am guessing my diving days are over now. As someone else said here on SB = diving is optional, living is mandatory.

I'm no doctor and I know next to nothing about Lupus other than that it's some kind of auto-immune disease that makes you sensitive to light. Is it really necessary to stop diving because of that?

Your quote caught my eye because I think if I had to stay out of the sun then I'd just go diving at night instead.

R..

 

[chillyinCanada]

How far out of the sun does one have to stay? Will wearing a longsleeved rashguard and a hat not suffice?

 

[TSandM]

Lupus is one of the hardest things in the world to diagnose, because the symptoms are protean, and to diagnose it, you have to think of it . . . It's easy when people show up with joint problems and a butterfly rash, and much more difficult when the presentation is atypical. I am glad you have a diagnosis, and like others, I doubt that having this disease will mean an end to your diving. After all, you have been diving for years with untreated lupus; treated, it should be better, and as long as the immunosuppression you require isn't severe, you should still be able to dive.

 

[RickyF]

Praying for a great treatment plan and your ability to keep diving.

 

[robint]

thanks everybody!

Saw my Rheumatologist on Friday. She says I am cleared to DIVE as none of my blood tests show neurological or blood involvement. Also no problems with kidneys so with medication I should be good. I will have to be tested several times a year to make sure nothing changes, but at this point it looks like I will be diving.

Sun --- I must stay out of sun, keep covered and use sunscreen. The issue is that ultraviolet light causes "flares" in the disease... which is probably what happened to me this summer as I went on dive trip to Roatan and didn't get "sick" with a flare until after I got back. I was guilty of not using the sunscreen religiously when out of water. So it isn't just the skin rash that is the problem with sunshine, it is that it causes the disease to flare up. Every flare means my autoimmune system is attacking some part of my body in healthy tissue...
Lupus is a freaky disease for sure -- it attacks and mimics other health issues and that is why it is so hard to diagnose. Until you have a "flare" with several symptoms, doctors tend to miss it.

So.... my husband is already planning our next dive trip. LOL