So, I guess I am somewhat of a mystery

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damouthy1
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 7/24/2010 8:09 AM (GMT -7)   
Hi all, how is everyone been doing? I hope well. First of all a quick update on my kids, they are healing both physically and emtionally! Meagan's face is almost completely healed. They did cast her wrist yesterday and decided to leave the stiches in her head in another week, but other then that she looks wonderful! My son is doing better each day as far as the guilt. The ex-girlfriend is still trying to destroy him, but he has decided to stay away from her...Yay! Once again, thank you all so much for your prayer's and well wishes for them.
 
So, on another note I went to the rheumatologist (so did my sis Antbuggey, but I will let her tell you all about her visit) and he is stumped! He says that I definitely have fibro (already knew that) and a severe case of it (huh?) As for all the lumps, swelling and pain, he has no idea! My SED rate is still rising, it is now a 63 and my white blood cell count is up still but he says I don't have RA or lupus. Which I kind of already knew that because my tests had came out negative before.
 
He basically told me that he had no idea what was going on, he said there is something happening but I don't know what it is. So, I had a chest xray done at my regular doctors it came out fine. She took blood to check my thyroid to see if maybe I have graves disease and I haven't heard back on that test yet. She said that if that test comes back ok that we will start scanning my organs for masses. So I ask her if I have cancer and she says that we don't know yet what is causing my problems.
 
Here I am worried and can't get any answers! I know my doctor is doing what she can and hopefully soon I will know what is going on with me. The waiting and the not knowing is pure torture though! She is taking care of the extra pain and trying to make sure I am doing ok through all of this, so that is a good thing.
 
Anyway, I have rambled enough. Thanks for listening and I hope everyone has a wonderful rest of the weekend. Take care!
Gentle Hugs,
Shannon
 
Fibromyalgia, Chronic daily headaches, Migraine disorder (with and without aura), GERD, High blood pressure, Depression and Anxiety
Oxycontin, Flexeril as needed, Lopressor, Lexapro, Omeprazole, Clonazepam as needed, Promethazine as needed for nausea from migraines


Retired Mom
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Date Joined Feb 2010
Total Posts : 1753
   Posted 7/24/2010 8:34 AM (GMT -7)   
I am so sorry that your guy turned out to be so lousy and my lady turned out so great. You don't happen to be in GA do you? If so, there is one in Savannah that you don't want to select and one in Brunswick that you don't want to select. There is one in Macon that is wonderful.

And, as far as your children.....I am so happy for you and them that they are doing better....and I'm happy that your son has made a positive decision in his personal life. It's so HARD at that age to understand the emotions and how strong they are (both positive and negative). I know he will make the right decision in the long run and a break from "miss drag" could be a wonderful thing. How many times do people say they had no idea how bad things were in their relationship until they got away from it? I hope this will be the same for him. There are so many choices ahead for him and she plays a really small role in that. I would hate to see him tied down to an overbearing, whining girl.....who needs some real years to help with maturity. It kind of reminds me of the "Bridzillas" on tv....absolutely no chance these relationships will work in the long run if the women are that selfish. Even their kids will suffer for it.

I'll keep you and your sister both in my prayers.
Retired Mom


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 7/24/2010 8:50 AM (GMT -7)   
I'm glad your kids are doing so much better, even though
they have a long road ahead, just keep them focused on looking ahead...
as soon as you find out about your other test, please let us know..
Prayers and HUGz to you....
((((((((((((((((((((((((((Shannon)))))))))))))))))))))))))))))))))
Will be hoping things work out good for you and your family...
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 7/24/2010 12:14 PM (GMT -7)   
damouthy1


The hurry-up and wait for the test, and not knowing what is wrong is the real hard part of it all. And especially getting the Doctors to do the proper test to find out what is going on! I have been fighting that for a long time. Sometimes I just wish these Doctors could and would experience just for a little while what it is like to be me and what I have to go through! I bet then they would pay attention and find out what the heck was going on! It is so frustrating when they tell you you that they know you have something wrong but they just don't know what it is! My attitude is then by Gosh find out! and fix it! if you can! But it seems allot of them don't care to do that! Hang in there, damouthy1 ( what else can you do right?) Your not alone that is for sure!



I do understand your frustration!



White Beard

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/24/2010 3:25 PM (GMT -7)   
Shannon,
First, I'm glad to hear your children are doing better both emotionally and physically. Just remember sometimes these traumas can have more layers than people realize, and there's no shame in seeing a therapist who specializes in trauma work.

As far as your doctor, well, at least he's admitting he doesn't have all the answers, and is trying to find out more - and helping with your pain in the meantime. Those are pluses. There does seem to be some caring there, but I do understand the frustration over not having answers and having to wait. I think we have to remember that even good doctors are human. The bad ones think they're not - and they're more dangerous, IMHO!

I hope you end up getting good news from your tests, but maybe learning some relaxation techniques in the meantime can help some. No, they're not magic, but if I didn't use some breathing and meditation strategies I'd be even more of a mess than I sometimes am! LOL

PaLady

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 7/24/2010 3:32 PM (GMT -7)   
Shannon,

I'm glad to hear that your kids are healing both physically and emotionally. As for you, that just stinks. I know what it feels like to have something wrong (and progressing) & not have a diagnosis. With regards to my eyes, I'm one of those "once in a lifetime," "case for the journals," cases. I have so much rare stuff going on (that seems to keep getting worse) & yet no one has any clue about the cause or what to do about it. It's awful. You get to a certain point where you just want a diagnosis, no matter what it is. I do hope that the tests you are waiting on provide some answers. And if they don't, just know that you are not alone in your frustrations!

hugs,
Skeye

damouthy1
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 7/25/2010 9:40 AM (GMT -7)   
Thank you all so much. I know that alot of us have gone through this as far as not knowing what is going on, it is frustrating to say the least. It does help to know that I am not the only one though. I guess all we can do is go through all the tests and wait.

I appreciate all of your comments regarding my kids, it means alot to me that you all really care! I will keep everyone posted on my situation and my kids. Thanks again all! Take care.
Gentle Hugs,
Shannon
 
Fibromyalgia, Chronic daily headaches, Migraine disorder (with and without aura), GERD, High blood pressure, Depression and Anxiety
Oxycontin, Flexeril as needed, Lopressor, Lexapro, Omeprazole, Clonazepam as needed, Promethazine as needed for nausea from migraines


antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 7/25/2010 10:28 AM (GMT -7)   
Shannon,
I love you too and I know we will get through this, we always seem to manage....ever since we were kids! I hate that you feel so terrible right now! I hope that we both get some relief soon! We may just be having our wheelchair races sooner then we thought! LOL! LOL!

Your only big sis,
Beckey

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 7/25/2010 1:19 PM (GMT -7)   
damouthy1 said...

So, on another note I went to the rheumatologist (so did my sis Antbuggey, but I will let her tell you all about her visit) and he is stumped! He says that I definitely have fibro (already knew that) and a severe case of it (huh?) As for all the lumps, swelling and pain, he has no idea! My SED rate is still rising, it is now a 63 and my white blood cell count is up still but he says I don't have RA or lupus. Which I kind of already knew that because my tests had came out negative before.



He basically told me that he had no idea what was going on, he said there is something happening but I don't know what it is. So, I had a chest xray done at my regular doctors it came out fine. She took blood to check my thyroid to see if maybe I have graves disease and I haven't heard back on that test yet. She said that if that test comes back ok that we will start scanning my organs for masses. So I ask her if I have cancer and she says that we don't know yet what is causing my problems.


Dear Shannon,

First I am so relieved to hear that your kids are doing well! That is wonderful!

I don't post all that often on this forum, although I lurk and read many of the threads.....I thought I should jump in here though and ask you a couple of questions. Pardon me if I have missed anything that you posted earlier that would make these questions moot!

1. Have you ever been tested for Lyme disease? Lyme disease can do many weird things, and can attack any system in your body. It can both mimic AND trigger autoimmune diseases (lupus, MS, RA, etc) and fibromyalgia. Lyme is much more common that most people realize, and it is very easy to catch. You can literally catch it in your own backyard and the ticks that spread the disease are frequently as small as the period at the end of this sentence so are not noticeable.

2. Have your doctors considered sarcoidosis? It can definitely cause strange lumps and masses, although I don't know what your other symptoms are, so it may not fit your picture.

I am NOT a doctor and am not trying to diagnose you, I am just throwing a couple of possibilities out there just on the remote chance that something might help you. I know very well what it's like to be in diagnostic limbo and it's just AWFUL!

I truly hope you do NOT have either Lyme or sarcoidosis.....I pray that you will find your answers very soon and that your doctors will know just how to treat your health issues!

Take care,
JoAnn
Lyme Disease, Babesiosis, Ehrlichiosis, Bartonella, EBV, CMV, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, IV Rocephin, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

autoimmunediseasesgfliving.blogspot.com


MIKEL99
Veteran Member


Date Joined Feb 2010
Total Posts : 914
   Posted 7/25/2010 1:44 PM (GMT -7)   
Hey Shannon , Geez I'm sorry they can't find a cause for your discomfort and pain , thats so frustration ! I had the same problem for a couple of months and it was very hard not knowing why I felt like I did so I can relate .I'm so glad your kids are ok now , thats one less worry for you at least . I' surely hope they can diagnos you soon , it does at least ease your mind a little to know why you feel like you do . Best of luck Shannon Girl , I hope all goes well for you . Mikel

damouthy1
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 7/26/2010 7:37 AM (GMT -7)   
Hey JoAnn and Mikel, thank you both for your concerns and well wishes. As always I am amazed by the support here! Are you feeling any better Mikel? You are in my thoughts daily, I hope you are doing well.

JoAnn, I have been tested for lyme but it was last year sometime. I have often thought that I have alot of symptoms of lyme disease. I think I will ask my doc to check me again just to be on the safe side. As far as sarcoidosis, I had never heard of that but I did look it up. You are right, I do have some of the symptoms for that too. My doctor did do a xray of my lungs last week and thought they looked good. I won't get the final report until the radiologist looks at it though. I read that the chest xray is one way to check for sarcoidosis, so maybe that is one of the things she is looking for? I will keep you posted on my results. Thank you JoAnn for responding to me and for your ideas, I will definitely ask my doctor. I hope you are doing well and having low pain. Thanks again and take care!
Gentle Hugs,
Shannon
 
Fibromyalgia, Chronic daily headaches, Migraine disorder (with and without aura), GERD, High blood pressure, Depression and Anxiety
Oxycontin, Flexeril as needed, Lopressor, Lexapro, Omeprazole, Clonazepam as needed, Promethazine as needed for nausea from migraines


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 7/26/2010 10:01 PM (GMT -7)   

 

   Dear Shannon,

     I am so sorry I havnt stopped by sooner. *hugg* I was really hoping they would have known more or learned something more by now. I am so sorry you are basically still undiagnosed. I can only imagine yoru frustraition is through the roof by now! I wont chat away as its hard to sit. Know you are in our prayers here. Stay strong!

*hugg*
  dani


 
TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood
 
Chronic Pain Moderator

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