I've had several people ask me on email how I am doing with my medical stuff, so I thought I would let you guys no where I'm at. I finished the trial run of immunity junk (gag) and I feel better than I have in a long time. I do have some new lovely things going on, that are more annoyances than anything. Like little cysts appearing on the cartilage of my ear, bruising around my left knee for no reason.
I have my first Rheumy appoint in a couple of weeks. They wanted me on the immunity junk for about 6ish weeks prior to see if that did anything. They told me to expect to be there for about 4 hours and they will be re-running a bunch of blood work and other things. So while I'm not looking forward to it, at the same time, I am. I'm hoping that I will finally get some definate answers.
So thanks for asking and hopefully, within the next month (factoring in time to get test results back) I will have some concrete answers to what is going on.
Thanks for the update. Was wondering. We're in your corner! Sending love...
Thanks for the update, Pooh! Thinking about you!!!
Sheesh, Pooh. Thanks for the update! I didn't realize you had to wait this long for answers.
Pooh ......after all you've been through lately .....you really need some good news ! I'm finally seeing cardiologist next week after a two month wait .Glad I survived the wait ! Thinking of you Pooh .....x
Hi Pooh....as Luise says....we are in your corner....I am praying for the best outcome. Love
Pooh, the waiting room will be full of WW. Tell your doc's receptionist to load up on trashy magazines, LOL. Thinking of you...
Lol Pen! LL, glad you finally got an appointment too! I'm sending big, humongous wishes your way as well to get some good news!
Holly, they warned me up front that it was a long wait to get in to see a rheumatoligist. They take all your medical records and study them before you ever get an appointment to see if they even think you need to see one, so I guess getting an appointment says something. Surprisingly, we don't even have one where I live. We are a decent size city (100,000) and there is not even one here. Now that shocked me. They set me up with a really good one in the City next to us, so I was warned it would probably take 3-6 months to get in. Took 3, so I guess that's good :)
My doctors that I have currently and the research I have done on my own all say the same thing. Lupus is very hard to diagnose because it mimics so many other things. The many months of tests I have had on other things, are actually good to rule out other things, although annoying to have to wait months and months. Who knows, once I get to the Rheumy, he may say "Nope, not Lupus." My doctor seems to think the Rheumy is going to have field day out of my arm as that is the one thing that I have that has never gone away and no one can figure out. So I may rename myself "lab rat" before this is ever settled. ;D
Pooh, no doubt your positivity about all of this will be your #1 weapon, no matter what the Rheumy says! :)
LL, I think your waiting room will be filled with WW as well. Your doc won't know what's going on! But we will all be there. Best wishes.
Pooh, sorry I just saw this.
I hope things start working out soon. I admire your positive attitude.
thanks Pen ....it's this Friday ....thing is if the heart behaves while I'm there , what happens then ?
Maybe give me a monitor to wear for a while .....you know how it is , you wait sooo long to see the doc ,
then when you do , things seem much better ...lol
It's still skipping away at time , missing beats , then catching up , so maybe something to regulate it .
Family BBQ at my nephews on Saturday , so something to look forward to , oh yes and it's my birthday too .. :)
Awww...I wanna be there for your birthday! Happy early Birthday!
My Mom was having issues and the same thing happened LL. The day of her appointment, her heart cooperated just fine! He did give her a monitor to wear for two weeks. Her's ended up being blood pressure and now that they have that regulated, she's been great.
thankyou Pooh ,
My blood pressure is fine .My own doc said that some women going through the menopause (forever)....
and also pregnant women , sometimes have these palpitations .
Perhaps not the raging ones I had , will wait and see , not feeling stressed about the visit .
Will be glad to know the cause .
I know what you mean. I'm not stressed about going either, well except I'm starting to feel like a pin-cushion!
Two things. 1. I had my appointment this morning....ALL morning. Really liked this Doctor. He was Russian! Lol. A little hard to understand but very nice and listened. Still don't know anything but they took a pint of blood and are running 15 different tests along with urine tests. I am supposed to hear something next week. He did find a ganglion cyst in the back of hand that he said needs to be looked at and he will deal with it after we get the test results back. So I'm in a little wrist splint for now.
2. LL? Did you get to have your appointment?
Sending love...
Hi Pooh :
We used to bang ganglions hard with a book ....ouch !
Had my appointment a week or so ago ...Doc decided my heart is AOK !
ECG showed no sign of heart damage or malfunction .....going back in four months .
I asked about the heart jumping and skipping .....oh you'll get used to that ! lol
I also asked whether the acupuncture could have caused the fibrillation ...he said he hadn't heard
of that being a cause .
So then I asked about getting acupuncture again for my arthritis and should I risk it ....he said
'' Well try it and see what happens !'' ......... :o
so how's that for science ? lol
Ha ha...gotta luv science. My Mother and DH said that the banging of ganglions was affectionately called "Bible Therapy"....I was all for it, but Rheumy said no..no..no...we don't do that anymore because it could cause damage! He's no fun.
Pooh - sending you good vibes that the blood tests come back with good results, and sorry you have to part with so much blood in the process - a friend of mine has clotting factor issues, and literally has to get 14 tubes of blood drawn every six months. She made the mistake of coming to a happy hour right afterwards one time, and had a very rough evening.
LL, I had to laugh at what your doctor said. :D Clearly, he doesn't think the acupuncture is to blame, but I can totally imagine it wasn't the most reassuring comment ever.
Thanks elsieshaye...they took 9 out of me today. She said, "Have you ate or drank anything this morning?" I told her I had not eaten just coffee and she went "Uh oh". The last thing you want to hear from the woman getting the big needle ready is "Uh oh". She was worried I was going to pass out.
Haha, yes, "uh oh" is second only to "oops!" on the list of stuff you don't want the people with the sharp objects saying around you! I complain when they take 3-4 tubes out of me every 3 months for diabetes / kidney / thyroid tests. And, really, they're tiny little tubes. I have to fast for mine, no exceptions, so the "uh oh" would've been really unwelcome, lol. Make up your minds, medical people!!!
Well that's what I thought. Every blood test I have ever had, they didn't want me to eat, so I figured I wouldn't this morning, just in case....shows you what I know!
Sending love to you Pooh. Hope everything will be fine Thinking positive is mandatory. Keep us posted on the results.
Love
I'm glad you found a good doctor, Pooh. That in itself means a lot. Good luck next week with the test results.
Quote from: lancaster lady on June 06, 2011, 12:25:48 PM
Doc decided my heart is AOK !
ECG showed no sign of heart damage or malfunction .....going back in four months .
I asked about the heart jumping and skipping .....oh you'll get used to that ! lol
I also asked whether the acupuncture could have caused the fibrillation ...he said he hadn't heard of that being a cause .
So then I asked about getting acupuncture again for my arthritis and should I risk it ....he said
'' Well try it and see what happens !'' ......... :o
so how's that for science ? lol
That's great news, LL, & a load off! My dh has an irregular heart rate, we think due to meds he was taking, niacin & a diuretic. It's mentioned as a possible side effect on the pkg inserts. Thankfully, his is not serious either.
Thankyou Rose ....
My cardio is a bit of a laugh , but very dishy !!
He reckons the reason for my 'episode' was stress related .
Which of course led me to this forum , after the Christmas I went through it wasn't
surprising I ended up in A&E.....alls well now hopefully , and my stress has disappeared
whilst talking to my cyber buddies ..... :)
Well, that's great! Where can we send the bill? LOL
George Clooney dishy? Becks dishy? That might explain the heart palpitations...
Well how do you like these potatoes??? I have not posted very much on my FB about my possible Lupus. I think over the last year and a half, I have referenced going to docs a couple of times and my weird arm. I also remember a couple of friends asking me about it specifically and me telling them a couple of things down inside comments. No big huge announcement...as I have no confirmation about anything yet.
So I post Sunday night that I am going for my first Rheumy appointment Monday. Get lots of well wish and such. One of my cousins assumes since I am going to a Rheumatologist, that they are looking at arthritis of some sort (good assumption), so I let her know that I am not going for arthritis, but that I have some weird stuff going on and they are looking at Lupus.
Long story short (Too Late!) my SIL gets on there and says something like, "Don't know it this is relevant, but you might want to let your MD know that your brother was diagnosed with Sarcoidosis, another autoimmune disease." After going back and forth with a timeline and symptoms, he was diagnosed 2 years ago...we have some of the exact same symptoms!
Well color me purple this would have been nice to know yesterday morning!!!!!! Lol.
Oh, Pooh...!!!
It may be a good thing that you didn't tell the dr., Pooh. Whenever I saw a new dr. & mentioned my diagnosis of fibromyalgia, they never bothered to look elsewhere. Who knows, maybe they were wrong about your brother?
You are probably right Rose. I guess I will wait until the blood work comes back before I go further with it. Although I know tests can give wrong results on occasion, I verified with him today that they had actually done a lung biopsy and confirmed it for sure.
Thanks Rose for the advice.
Well Pooh ...at least you maybe now know what it is .....good news ??
I think this disease can often go away unaided , so hopefully that will be the case for you .
hope they come up with a 'verdict ' soon ........ ::)
Oh, well I hope you'll get answers soon, so you'll know what it is you're contending with & can go from there. I hope it's something that will resolve itself, as LL mentioned.
Quote from: lancaster lady on June 07, 2011, 01:33:28 AM
Thankyou Rose ....
My cardio is a bit of a laugh , but very dishy !!
He reckons the reason for my 'episode' was stress related .
Which of course led me to this forum , after the Christmas I went through it wasn't
surprising I ended up in A&E.....alls well now hopefully , and my stress has disappeared whilst talking to my cyber buddies ..... :)
I can relate, LL, as I no longer need to visit my therapist, thanks to WWU...
Thanks ladies. I read up on it last night and it does say the majority of cases resolve on their own after 24 - 36 months. There is about a 15% chance that you end up with it for a lifetime. Lupus never resolves so I will take those odds! The only difference between my brother and my symptoms is the muscle pain, inflammation and knots in the muscles (thus weird groove in arm, maybe lol). Everything else is the same.
In researching it last night I found out that 90% of people with it have it in the form of being in the lungs and swollen lymph nodes. It's basically is granulomas (clumps of inflammatory tissue) that form in the lungs. It can affect other organs. They are non cancerous (Yay!). The other 10% get that and the granulomas can form in muscles too. They can resolve on their own or can turn into hardened knots that stay. That could explain my extra symptoms if I am one of the lucky 10%. My brother just has it in his lungs so far.
But just like all my internet research over the last year and a half, I have self diagnosed myself with about 20 different things! Lol. I just think it very coincidental that my brother was diagnosed with that and our symptoms match on most of it. Like everything, I will be patient a little longer........
Pooh, is sarcoidosis genetic?
I hope you get answers soon, the wait is terrible.
Depends on which web-site you read...Lol. It looks like the consensus is yet. Some of them read that yes, it is hereditary. Some of them are reading, although no a proven statistic, evidence is leading to genetics playing a role.
I know I don't have this diagnosis, but it got me thinking last night about my brother after I read that. My grandfather died in 2003, at the ripe age of 94. I remember when I was a child, that he was diagnosed with emphysema after having a bout of breathing problems. That would have been somewhere in the mid to late 70's. I remember Mom remarking several years later that he never had much issues with it and I never saw him in the later years struggling to breath. I am now wondering if he didn't have sarcoidosis instead of emphysema, and his resolved over time?
Just the way my brain works...Lol. My Mom is out of town until tomorrow so I haven't had a chance to ask her about it yet. I was struggling if I should talk to her about it, because...ummm....her and I are very close and she has never mentioned my brother's condition. She knows everything I have been going thru so I don't think she knows! But then I realized that my SD is on my FB and can see the exchange between my SIL and I about it, so I would think they are not keeping it secret.
This may be the Light at the end of tunnel! I'm crossing my fingers, ankles and eyes. Sending love...
Pooh, I find I'm rooting for one disease over another one, which is kinda weird when you think about it, LOL. But you don't want to hear that you've got "nothing" 'cos that would be frustrating and put you in the dreaded hypochondriac (or worse) category. So, I hope you find that you've got the very quick-resolving, non-recurring form of whatever it is that's giving you your uncomfortable and troubling symptoms. There!
Ha ha ha....don't feel bad, my DH has been doing the same thing. Up til this week he was chanting, "Please let this be thoratic outlet syndrome and not Lupus!" Now after reading about the sarcoidosis, he was chanting last night, "Please let this be sarcoidosis and not Lupus....BUT THE MILD KIND THAT GOES AWAY! If the severe kind...Please let it be Lupus instead of sarcoidosis!
I was laughing because he suddenly realized what he was saying and apologized telling me that he didn't mean he wanted me to have anything. Poor fellow.
Pen, you are right. If they don't figure it out soon, I'm going to call myself a hypo. The one good thing (lol) I have going for me is this groove in my arm that let's me know I'm not crazy. I have taken to saying to doctors, "You do see that right?" just to double-check my sanity.
And this lovely assessory wrist splint with the big knot on the back of my hand. Of course, could be totally unrelated but now I'm imagining it is one of those granulomas instead of a ganglion cyst. I'm driving myself bonkers!
Not knowing is a terrible place to be. As soon as you know, you can take action. Hang in there! Sending love...
I will tell you that I guess I finally hit my limit last weekend. Saturday night my hand started hurting and I noticed the knot had doubled in size from the week prior when I found it. I went from laughing to crying in 0.6 seconds flat. My poor DH was looking at me with a "What happened?" look and in between sobs I was trying to explain that I was just frustrated that something else had developed and that now my hand was hurting and I was beginning to think I was crazy and blah, blah, blah.....
He was so sweet and just hugged me. He finally said, "I wondered how long it would take you to finally get upset about it all. A year and a half? I would have been bawling after a month of being in pain." Later he did assure me that he could see the groove, the knot on my hand, was present for the coughing, fevers, etc. and had massaged multiple knots in my shoulder, neck and arm. So he said if I was imagining everything, he would appreciate me not sharing my hallucinations with him any longer. Gotta luv him.
He sounds lovely Pooh : throughout all my tests over the years my DH seems to distance himself , weird really .
However this week he came down with gout in his toe.....oh poor thing ...not ! got my own back with a bit of
his own medicine !
Awww Pooh, he's a good man. A year and a half is a long time to be going through that process, hugs. The waiting and not knowing is the worst part. WebMd is the devil too, I hope you're not reading there lol. I was thoroughly convinced I had a tumor in my hand after reading there one day. Turned out just to be a run of the mill cyst.
Whataguy! :D
Quote from: lancaster lady on June 08, 2011, 11:07:42 AM
He sounds lovely Pooh : throughout all my tests over the years my DH seems to distance himself , weird really .
However this week he came down with gout in his toe.....oh poor thing ...not ! got my own back with a bit of
his own medicine !
Hee hee. I know that sometimes it has to drive my DH bonkers when I say, and today....blah blah blah. They have to get tired of hearing it, but so far, mine has been a trooper. Maybe your DH will be more sympathetic now?
Quote from: pam1 on June 08, 2011, 11:12:32 AM
Awww Pooh, he's a good man. A year and a half is a long time to be going through that process, hugs. The waiting and not knowing is the worst part. WebMd is the devil too, I hope you're not reading there lol. I was thoroughly convinced I had a tumor in my hand after reading there one day. Turned out just to be a run of the mill cyst.
I have read webmd, healthboards, wrong diagnosis, vanderbilt website, Mayo Clinic...get the idea? I think sometimes I'm my own worst enemy!
Well, there were the "good old days," Pooh, when we never questioned anything a doctor said and they just buried their mistakes.
It's my nature about everything. I researched our cruise for months. Buy a new car then I research all reviews and car websites. I do it with everything. I think I have been worse about this because no one knows and I so want someone to figure it out so I can do whatever needs to be done, if anything.
Luise I guess you did have to just take everyone's "word" for things before the internet.
Well, I'm a nurse so I was more fortunate than most...but doctors were seen as Gods and never questioned. :-X
Quote from: luise.volta on June 08, 2011, 11:48:14 AM
Well, I'm a nurse so I was more fortunate than most...but doctors were seen as Gods and never questioned. :-X
My Mother tells me stories all the time of things my grandparents did while they were growing up to doctor themselves. First, they didn't believe in doctors and 2nd, they were poor and didn't have the money. She told me about my GP getting poison oak so bad one time and filling a metal tub with boric acid on the carport. He stripped and dipped himself in it. She said he screamed so loud that the entire neighborhood heard him, and then was mortified that he was running around the front yard, naked and screaming because it burned so bad!
Yes, the depression and no insurance was a horrible combination. I never saw dentist until I was 23!
I can't remember where I posted what my Rheumy ended up saying, so I'm going to put it here because something else happened Friday night.
Rheumy tested for Lupus and some other autoimmune stuff. All kinds of blood work, urine analysis and gave me a good once over. He looked at my arm and said it could be scleroderma, but that I didn't have enough of the signs. So when the finally called back, all my blood tests looked fine. He said I tested positive for Sjogren's Syndrome (dry eyes and dry mouth), which I already knew because of the eye doctor and dentist. I'm still borderline anemic but that everything else looked fine. My ANA level was now negative instead of the positive a few months ago that I tested, so he said autoimmune wouldn't do that. He basically said to wait a year and come back and be tested again. He said it is obvious with your arm that something is going on, but until you start showing more clues, we are just going to have to wait.
Needless to say, I wasn't thrilled. I was that I tested negative for Lupus, but not thrilled about him basically saying, yep...something wrong with that arm but let's wait until it gets worse and see what shows up. Ok, so I've been pulling a stubborn. I've been mad at all doctors and basically told DH that I was done trying to figure it out and my arm could just fall off! DH has been all, "Let's get another opinion" and I told him, "Nope...I'm done." Yes, I know I'm not being cooperative but dang it, I'm tired and frustrated. So DH has backed off and he's just waiting until I get done with my current stubborn streak.
So last Friday, we had a Duck Race here in town. A local radio station sponsors it every year and you call in to win a rubber duckie. They assign it a number and give them away for a month. They end up giving away about 500 of them. So I won one and Friday was the race. You do down to our big greenway where this is a huge creek and they dump them all off the bridge and you follow your duck about 1/2 mile to the finish line. The winner got a jet-ski. It's a big event here every year and they have all kinds of food vendors and service vendors there.
So we have to get there an hour early and me and DH are wandering around the vendors. Ice cream, hot dogs, funnel cakes, massages, car seat checks, etc....they have it. We pass a tent and this guy yells out to my DH, "Hey! Long time no see!" We walk over and my DH explains that he went to school with this man and introduces me. They are yakking and catching up and I notice the signs on the tent say they are dermatologists and are looking for free at people's skin to check for cancer and such. There is about 4 of them in there checking people. So I finally asked him if he was a dermatologist and he says "Yes, you need me to look at something." I kind of held my arm out and said, "I'm not sure but the Rheumy had mentioned Scleroderma and when I looked it up it said dermatologist, but then he ruled it out." He grabs my arm and in like 10 seconds says, "Oh wow! En Coup de Sabre! Do you know how rare that is in an adult!" DH and I are both just staring at him and he is pushing on my arm and looking all over it. He was all excited and I finally said, "You mean you know what it is?" He proceeds to tell me, "Yes, that's the fancy French name for it that translates to "Sword Strike". It is a rare autoimmune disease that mostly strikes children on their foreheads. It has been known to manifest in adults rarely and when it does, it shows up on an arm or leg for some reason. The medical term is Linear Morphea. The french name sounds cooler though. " He went on and on and was asking me how much pain I was in, how long I had it, etc. I literally was in shock. He proceeds to tell me that since I said it was looking better the last couple of months that I was more than likely in remission. He tells DH, "You need to stress her out badly. It will cause a flare up. When it flares up, call me immediately so we can get a biopsy of the skin. That's how it's diagnosed." I told him that I didn't understand if it was autoimmune why my ANA was negative this time when the Rheumy said it should be positive. He says that when it's in remission, it will not throw a positive ANA which is why I did one time and not this time. He says there is no cure, but you treat the symptoms so that is does the least amount of tissue, muscle and nerve damage. He says it will not attack anywhere else, once it manifests on your arm and will not shorten my life expectancy. The worst he said it will do if not controlled is that it can cause mobility issues with my arm and shoulder if it does too much damage and cause alot a pain when it flares. He said since it is in the autoimmune family, I can have many of the symptoms of other autoimmunes when it's flaring like the headaches, low grade fevers, fatigue, cold sores and other things I have experienced.
So can you believe it. 18 months, thousands of dollars, 8 doctors and I get diagnosed at a Duck Race!!!!! Oh lol. Only me.
Well Pooh ....!!
At least now you know ......how do you feel about it ?
now you can treat it ?
I'm still having tests ......know of any more duck races ?
I feel better knowing that it's not as bad as some of the others that they were looking at. I will wait until I have another flare up and go let him biopsy my arm, but at the same time, trying not to get my hopes up yet that it will come back positive, although he was positive. Been there...done that.
I hope they figure yours out soon LL, the waiting is horrible. If I get a chance at another duck, I will get it for you!
Oh wow, well at least you know what it is finally!
OMG! Serendipity!!! What do we know about how connections are orchestrated? I am thrilled for you!!!!
Wow, that's incredible. You might want to contact the Mystery Diagnosis show! I'm so glad you finally found out what is going on.
Lol Pen! It's now put me in a weird place. I am feeling better so I don't want another flare up, but he said I needed a flare up in order to do the biopsy. I want the biopsy so I can get a positive diagnosis, but I don't want the pain and yuck of a flare up!
Geesh......
I'm happy for you, Pooh, that you finally got a diagnosis & more so that it's in remission! What a way to find out though~!
Good luck with your test results, as well, LL...