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Cautiously optimistic


Deb
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I can't remember if I told y'all that I fired that endocrinologist from Harvard. I don't care where he got his degree or how many magazine articles about himself he has hanging on his walls, the man is full of ______. (fill in the blank with your own choice of words)

With the help of some really nice people on a thyroid forum, I found a new endo and saw him yesterday. What a huge difference! He examained me top to bottom and then the questions started. It was like a machine gun, but he wanted to know about my past problems with endomitriosis, polyovarian cysts, fibroid cystic breast disease, and even the liver/kidney/gall bladder failure that occured when I had mono-induced hepatitis. Guys, I've been asking doctors if there is any relationship to all these things for YEARS and all I could get was "Well, you're geneticially inclined to be lumpy". All those years in medical school and the best they could come up with was to make me sound like the 8th dwarf??? <end rant> I can't tell you how happy I was that *finally* a doctor was listening to me and putting the puzzle pieces together.

He didn't express an opinion about the endo I just fired except to snort when he heard the man had taken me off my thyroid medication. He said there was no reason for that since my blood levels were all normal. (altho he's testing them all again to see where I am now)

His biggest concern right now is about the pain in my hands, wrists and my collarbone. He said that even with the thyroid swelling, it wouldn't cause that kind of pain in my bones and shoulder. And then he kinda dropped a bomb on me and said that it is very possible that I have rheumatoid arthritis. Bruce had to hang onto me for that one coz I sure didn't see that coming. The dr sent me to the hospital for x-rays of my spine and neck immediately.

The bottom line is that Grave's Disease is an auto-immune disease and so is rheumatoid arthritis. I've been doing a lot of research online last night and and all day today to find out that it's fairly common for people with one type of auto-immune disease to have more than one. I've also learned that endomitriosis and polyovarian cysts fall into a sub category of auto-immune disorders, and that auto-immune disorders are genetic. (gee thanks mom) There is a gene that makes the body's immune system think that normal functions, hormones and body parts are poison and tries to eliminate them. Just my luck..........the one thing about me that's an over-achiever has to be a psychotic immune system.

There is also a possibility that I may have Sjogren's Syndrome, an auto-immune disease that effects the eyes because I have all the symptoms of that as well. I'm seeing the eye doctor on Saturday to find out.

Basically, if what I've learned is correct, I'm classified as MAS (multiple auto-immune syndrome) Type 2. To be honest, I'm having a hard time with the possiblity of rheumatoid arthritis. We'll see what the x-rays and test results have to say in a couple of days, but if that is the case, I'm going to do everything I can to fight it. There are a lot of things that I could give up if I had to, but I need two good eyes and two good hands. I ordered some books today about dealing with auto-immune diseases by using mediation, vitamins, herbs and diet in addition to the medical treatments.

I'm worried about the possibility of RA and the fact that there may be some liver problems as yet to be discovered and what we're going to do about these nodules in my throat and how they're going to get control of my heart rate and what's wrong with my eyes and when my brain is going to work correctly again, but I feel empowered at the same time. (well, once I got past that crying jag last night) Before seeing this doctor, I felt like my body was just falling apart bit by bit for no reason and that was driving me crazy. I *knew* deep down that there had to be a common cause for this. Now that I know there is, I think I can deal with it better. This makes sense to me and it's something I can deal with logically. I'm a Virgo. Logic is neccessary for me. :lol:

The dr said he'd call me in a couple of days with the results of all the tests and then we'll go from there. But with a knowledgable doctor on my side and some straightforward answers, I think I can get a grip on this now.

Deb

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Deb, what can I say, but hang in there girl, and know that you have lots of powerful good thoughts and prayers coming your way. I'm really hoping this doctor knows his stuff and knows how to look at the whole picture and can find ways to ease your pain.

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Deb, I am sending you BIG Hugs!! I know what you might be going through and how you might be feeling. I found out 3 years ago (The last time I saw my endo dr.) that I have RA. The Meds they gave me to treat it made me feel sick (Dizzy to which did not work while working out :wave: ) and so I just stopped doing Lunges (Which is when I had issues most while I worked out). In the past year, I noticed pain in my hands and I am sure that it's Arthritis.

Please keep us posted dear and let us know the results!! :lol:

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Deb, it sounds like your new dr. is really great. Having a dr listen to you is so important. They can't really do anything to help you if they are listening to what is bothering you. The news may not be what you would like to hear, but at least you have an idea of why you are going through so much. Crying jags are totally acceptable and in fact, encouraged. It releases so much, at least for me. Just remember, we are hear for ya with big {{{HUGS}}} and wide shoulders whenever you need some to lean on. :lol:

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Sort of a mixed blessing, isn't it? You know what's wrong, maybe...but now what to do to FIX it!

Yes, autoimmune disorders can "cluster". I have an autoimmune disease myself, and am grateful that it's ONLY one. Maybe now at least you have found a doctor who can offer you good treatments for it! I wouldn't blame "mom"..sometimes these things skip generations, sometimes you're "the first". Anyway..I hope all this gets sorted out soon and you get on proper treatment!

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I also have multiple auto immune diseases, including Sjogren's. Sjogren's affects much more than your eyes. It's a systemic disease that can affect all organs as it attacks all moisture producing regions of the body. You may notice having a dry mouth a lot. It can cause pancreatitis, liver abnormalities, neuropathy problems, skin disorders, fatigue and a number of other things. It's a very trying disease.

I have antiphospholipid syndrome and secondary sle (lupus) as well. All of my other autoimmune disorders stem from having APS.

I'm not saying these things to scare you. I just believe that forewarned is forearmed. The more you know, the better you can be an active partner in your health. You can read more about Sjogren's here: http://www.sjogrens.org/

I am so happy you've found a doctor you like. That is one of the hardest things in the world. I'm hoping this is the beginning of an upward movement in your health.

I can promise you, this is not a death sentence, nor should you let it define who you are. A long, full life can indeed be had. You won't always be comfortable, and you won't always be suzy sunshine, but I have every good feeling that at least with answers you can come up with a plan.

Now go kick this stuffs butt!

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I can promise you, this is not a death sentence, nor should you let it define who you are. A long, full life can indeed be had. You won't always be comfortable, and you won't always be suzy sunshine, but I have every good feeling that at least with answers you can come up with a plan.

Now go kick this stuffs butt!

You know, that is so easy (to let it define who we are) because it affects SO many things that we do. I love the words you used because you are right, it's not always comfortable BUT we can live with & bear it when we "know" what it is! Knowledge IS power :lol: Hugs to you Dena! I am ready to kick Butt too!

Deb, some things to help the Liver naturally is dandelion root. Also Milk Thistle. I drink it as a tea. Dandelion also helps with Urinary tract infections too.

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Thank you all sooooooooo much for the encouragement! I don't think there is a finer support system anywhere in the world than this family.

Ann, I actually can blame my mother for this. LOL And my grandmother too. My mother is hypoglycemic and hypothyroid, and my grandmother had Parkinsons, so it's definitely tracable. But as long as I don't end up with their personality traits, I can handle the genetic defects. :wave:

Tracy and Dena, you're so right that this can't define who I am and that's a fight I'm ready to take up again. Graves causes a lot of obsession about the symptoms and it can dramatically change a person's personality and that's been a real struggle for me. (as Tracy knows, there have been times recently that I've seriously questioned my own sanity) Chronic exhaustion causes depression and that has been a really big problem too. I haven't much liked the person I see in the mirror every day because she's so different from the person I really am. I think the treatment (or lack thereof) that the old endo was putting me thru made that a lot worse because I felt it was becoming hopeless. I had reached the point of thinking that there was no hope of ever getting better. I've spent four months in this limbo with my only medication taken away and left to deal with the disease with no medical help at all. He didn't even return my last all about having cardiac symptoms. He is *so* fired! :lol:

But with a new doctor who is helping me to see the whole picture, I feel like I have a sense of perspective again. I can and will fight this and find myself again. Now that I know it's a multiple disease issue and what causes it, I can educate myself, prepare myself, form a plan of action with my doctor and meet it head on. I have a high tolerance for pain and I can accept a rough road, but what I can't deal with is "not knowing".

Dena, thank you SO much for the information about Sjogren's. So many of the symptoms of autoimmune diseases are duplicated within one another and I hadn't found a lot of information about Sjogren's yet. These things overlap so it's hard to tell where one ends and another one begins. The most encouraging thing is that Dr K *does* seem to know where those lines are defined. He looked me straight in the eye and said, "This is all an enigma now, but we will find the answers".

Dena, do you have problems with a deep, deep, deeeeeeep itch in the inner corners of your eyes? I mean, the kind of itch that makes you want to reach inside your head and just rip them out? Eye drops don't help, cold compresses don't either. Sometimes it feels like there's something in my eye even tho there isn't, but it's that deep itch that is almost totally unbearable.

I am ready to kick Butt too!

<dragging my @ss-kicking boots out from the closet> Wow, stacked heels and pointed toes. That tells you how old I am! Tracy, where are your boots? And did you reschedule your appointment with your endo yet? Coz remember, we're going thru this together!!

Just remember, although that one doc went to Harvard there is always someone that is at the bottom of the class!

<cackle> That might explain a lot. And I've decided to not trust any doctor wearing sweaters that look like they were stolen from Bill Cosby's wardrobe.

Deb

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Deb, I have been thinking about you and I am glad you found a better doctor that is looking for some answers.

I too have multiple auto immune disorders (CFS, FM, Meneire`s, etc). It is alot to take it right now. But when you find out what is what, you will be informed and learn how to roll with the punches.

Some days will truly suck. Others will be great. You will eventually learn how to deal. It is not a life sentence and it does not define you. But I know that you already know that Deb..Now grab your stacked shoes and gauchos and go stomp on some immune system booty!

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Deb, I'm so glad that you've found someone to help sort out all your health issues. I definitely think it is better knowing whats happening, even if whats happening is bad. That way you can do your best and inform yourself on what treatments (conventional meds or alternatives) may help, and whether you want to try them. Hopefully you'll start feeling better soon and the RA (should it be that) stays stable for a long long time.

You're in my thoughts

Muriel

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Medicine has finally discovered autoimmune disorders! Deb & Tracy, I'm NOT the mom y'all got this from, but I'll hold y'all up & be your cheering section! I think Gilda Radnor said it best, it's always something.

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Deb, so sorry to hear of your medical struggles, but I am very happy for you that you have found a Dr. who is knowledgable and willing to work hard on your behalf to find some sound answers. That is half the battle I think.

Just knowing what you are dealing with and having a "name" to associate with it makes you feel more empowered and equipped to fight it...it's the not knowing that makes one feel as if they are going crazy, having all these weird symptoms and the Dr. looks at you like you are some kind of hypochondriac B) :lol:

I'm sending hugs your way, and have a pair of butt-kickin' boots if you need any extras :lol: :wave: Just because we work in "mini" does NOT mean we are "minnie-mouse" :p :yes:

Chris

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Woah, the mixed blessing bag, I think it will be good in the end, the new Dr seems to be on the right track, and you are such a positive person, no telling who's gonna get stomped first. We are here for you and sending huggs and good thoughts your way.

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Dena, do you have problems with a deep, deep, deeeeeeep itch in the inner corners of your eyes? I mean, the kind of itch that makes you want to reach inside your head and just rip them out? Eye drops don't help, cold compresses don't either. Sometimes it feels like there's something in my eye even tho there isn't, but it's that deep itch that is almost totally unbearable.

Oh yes! It will drive you crazy! I find I rub my eyes a lot because they are always itchy and dry. I use GenTeal Lubricant Eye Drops that seem to help. There are few different types of GenTeal, the gel is the one I like best. I use it at night right before I go to bed too. I still have issues with dry eyes but it's better than nothing.

I also get that horrible roof mouth itch. I suck on sugar free hard candies, mostly lemon :-) I also take flaxseed oil orally. Not sure it helps but I figure it can't hurt. Just be sure to ask if these are safe for you.

Feel better soon :-)

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HEY DEB!

Im rootin for ya!

I hope you and the new Dr can figure this puzzle out and give you some answers!

knowledge is power...even if its only the power of positive thinking!

HUGGGZZZ

nutti

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I also was diagnosed with Sjogren's about 20 years ago but I am one of the lucky ones.They got it stabilized early. My symptoms are pretty much aches and pains in my joints and only occasional dry mouth or eyes, that is it. I also get really tired every three or four months and wind up sleeping for a couple of days solid. It took quite some time for them to figure out that I did not RA or any of the other like auto immune. One they got me on hydroxychloroquine I was a new women. Hope things work out for you, it can't be any fun.

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