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Thread: I have some imaging CD's

  1. #166
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    Rohrer,
    I am so sorry for the pain you have been experiencing. Unfortunately life is so unfair. I'm so glad you have a sympathetic Doctor.
    Very gentle cyber hugs to you.
    Sally
    Diagnosed with severe lumbar scoliosis at age 65.
    Posterior Fusion L2-S1 on 12/4/2007. age 67
    Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
    Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
    New England Baptist Hospital, Boston, MA
    Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

    "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

  2. #167
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    Thanks, Sally.
    I just never realized that there was any real immediate danger from my "disorders", just pain. Having major blood vessels pinched down by angry muscles is a HUGE wake-up call for me that this is more serious than I thought. I shouldn't balk at taking my meds like I do and just be thankful that I HAVE them. I imagine that people with tetanus experience things somewhat akin to my problem, only worse. Boy am I glad they have tetanus vaccines!
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  3. #168
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    I'm just reposting this here so that I don't lose the train of events that are occurring with me. This thread is like my chronicle.

    My muscle biopsy came back negative for MD. My doctor (neurologist) said I'm a mystery. He's suspecting some protein defect somewhere along the pathway of energy production in the cells. He's thinking a mitochondrial defect. However, my sister and my DAD had/have similar symptoms. Our mitochondria come from our mothers. Hmmmm... He's sending me to a geneticist next month for a genetics work-up. I'll keep you all posted.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  4. #169
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    As promised, I'm updating.
    I saw the geneticist last week. She still thinks it's Myotonic Muscular Dystrophy after the physical exam. She mentioned Charcot-Marie Tooth Syndrome, but there are more dystrophy symptoms. She's testing me for both if/when my insurance approves the DNA tests. They are very expensive. She's also going to run a panel on mitochondrial defects, although she agrees with me that it doesn't make sense with my sister and my DAD having similar symptoms. The neurologist wanted her to run this panel, so that's why she's going to do it.

    I had an almost emergency episode today. I'm glad it happened today and not over the weekend. It was another episode of my neck muscles clamping down on my nerves and blood vessels. I'm in cardio rehab because my arrhythmia isn't under control. I was having the pain in my arm then, actually I woke up with the muscle spasms in my neck. But they couldn't get a blood pressure reading from that arm at all. My regular PCP was completely overbooked, so I went to my doc at the Neurosciences department of the bigger hospital that's quite a bit farther away. I'm so thankful that he made the time for me! He spent over an hour. The subject of surgery did come up. He said there are structures there in my neck "trying" to do what they are supposed to do against the curvature. We talked about getting a second opinion and trying to find someone with experience in this type of rare curve. I told him that I'm not in good enough health to undergo a surgery like that right now. My heart isn't under control and I don't have any weight to lose. He agreed there. But I have a feeling this isn't going to be the last time this subject comes up.

    Meanwhile, I will wait to get insurance approval for the DNA tests. If they find out what it is, then we'll know more about how to treat it. If it comes back negative for anything, that just means they haven't a name for what I have and I will be sent back to neurology for management. But, I look at it this way; if they come up empty-handed again, they at least have my DNA and a list of my symptoms if someone similar shows up. I have a gut feeling that it's going to show up nothing. That's how it goes for me. I'd rather KNOW what I have than to have some mystery illness.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  5. #170
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    Well it sounds like you are going to get an answer and that you have a good set of doctors to work with. If the insurance pays for the mito work given your father and not mother has the same symptoms then I will be surprised but I guessed it it not impossible for something to show up there that isn't a mito disease.

    Good luck, Rohrer.
    Last edited by Pooka1; 03-22-2014 at 08:19 AM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  6. #171
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    My docs don't have their medical records. So I guess there's no proof that their symptoms are like mine. It's just by what I tell them. But trust me, they are! My sister was going to run a 5k for work and had done so in the past (I think). When she was training for the run, she kept falling. She thought she was just being clumsy, but every time she went out to run she'd trip and fall! Her heart rate is also elevated, not like mine requiring medication. My dad's was not. But my dad had early onset cataracts in his 40's (MMD). My sister and I actually laughed about it when I was told that it was not normal for your hands to stay curled when holding on to something for a long time. When we'd play on the monkey bars as kids, we'd run around like little monkeys with our fingers curled! It only lasted a few seconds, though. But we had a chuckle. My dad was put through a lot of tests, but because he was in his 70's and had mini-strokes, they couldn't get that out of their heads and told him it was that. Toward the end but when he was still able to feed himself, he had a hard time putting his fork down because it wouldn't let go. When my sister and I talk about stuff, it's like, "Oh my gosh, me too!". They've diagnosed her with everything from MS, Parkinson's Disease, fibromyalgia, and now it's Left Hemiplegia of Unknown Origin. It's on both sides with both of us, but also worse on the left, especially in the legs. So...whenever I have a test done, I call her up and say, "I did this for us!" and she says, "Thank you!" She's tired of all the testing and hearing scary stuff and then they change their minds. So she's done. Now I pick up where they left off with my dad and sister and am having the "big guns" testing!

    It's to the point now with me that I can no longer walk on my heels or toes. I feel very sad about that because that is something usually very easy to do. I look like a toddler trying to take her first step. The geneticist stopped me and said she didn't want me falling down. I was determined I was going to give it my best shot! It's really frustrating when you "think" you can do something so simple and then find out that you CAN'T.

    So, hopefully this DNA testing will reveal something. I'm not really expecting it to just because that's the way it goes with me and my dad and my sister every time. But if it does, we will at least be vindicated of not being lazy hypochondriacs. My sister pushes herself and goes anyway. She's not as affected as I am. She doesn't have scoliosis, either. But her daughter does! Her daughter doesn't have a curve "like" mine, but it is at least as bad as mine and very painful at times where she cries and can't get out of bed. I guess I'll never know for sure if my dad had scoliosis. He never mentioned it, but had a lot of back pain. His mother had scoliosis. I think whatever is wrong "may" be tied around that scoliosis gene.

    I told my parents I got their left-overs. I'm the youngest of 7. LOL Oh, and the sister that I'm talking about is my only full-blooded sister. The rest of my brothers and sisters are half from either mom or dad. We're 15 months apart. It's funny because she's short and I'm tall. It's always been that way. My mom always wanted twins. I never got my sister's hand-me-downs because we were always the same size. My mom used to dress us alike and everyone always thought we were twins! Then at around 12 and 13, I passed her up. She's only like 5'3"...LOL
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  7. #172
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    Rohrer...

    At least you'll never be boring to a doctor!

    It sounds like you're close to getting a real diagnosis. I'm sure it will be nice to know, even if it doesn't change anything about your treatment. I have a friend with Ehlers Danlos, which is another rare disease that is not totally dissimilar to what you're experiencing. Watching her go through everything has made me realize how tough it is for those with rare diseases, as it can be difficult to know what treatments work best.

    Hope you know soon.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  8. #173
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    Thanks, Linda.

    I actually had one doctor tell me he thought I might have Ehler's Danlos because of my hyperflexible joints. My nephew DOES have Ehler's Danlos. The geneticist said I don't have it. My hands aren't limber and my skin isn't stretchy. Although I don't have stretch marks from pregnancy, I think she said that stretch marks from pregnancy ARE another thing that it causes. I have the soft skin, though. I'm pretty sure my daughter DOES have it. She can bend her fingers down completely flat with the palm of her hand and her skin is SUPER soft. Poor thing also got bad stretch marks and has silvery wrinkly scars wherever she's been cut. She can do other weird things with her hands that look kind of creepy. She also has mild scoliosis, easy bruising, delicate skin, and flat feet.

    I have some kind of connective tissue disorder, just don't know what it is. Maybe a carrier of Ehler's Danlos would show "some" manifestations of loose jointedness, but not sure. There are lots of genetic things that work that way. I'm thinking it may be incomplete penetrance, where I am a carrier of the autosomal dominant gene, but do not have all of the classic symptoms. My daughter has so many of the classic symptoms that there's no question in my mind that she has it. But for MY health, it isn't an issue. My daughter would never get it checked out.

    My family has kept the doctors on their toes. My doctors just say I'm a "mystery". They're baffled, especially when new stuff crops up. My PM&R doc seemed to be thinking that straightening out my spine might help. But, like me, he's afraid that once it's done, it's done. If it turns out badly there's no going back! I think that's the biggest fear on the forum with presurgery people simply because it doesn't always turn out as nice as we'd like. There's no one that I can find that's ever seen a scoliosis like mine. My heart should NOT be affected with a curve in the 40's, but it is.

    You or anyone with a real interest are welcome to pass my x-rays along to scoliosis surgeons and ask some of your guys if they've ever seen anything like it. Especially the earlier ones before the lower curve progressed into the upper 30's. Then show them the progressive ones. Perhaps they will have seen it or know someone who has. THAT would be the doctor I need to see.
    Last edited by rohrer01; 03-23-2014 at 02:33 PM.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  9. #174
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    Quote Originally Posted by rohrer01 View Post
    Poor thing also got bad stretch marks and has silvery wrinkly scars wherever she's been cut.
    My daughters have this. One got a minor scrap on her chin and it left a scar! That is crazy. The other has a few "smiley face" smiles coming off perpendicular to her surgical scar where the skin just seems to give way. Very strange. They are both being monitored for Marfans which if they don't get the aortic enlargement is not going to be an issue any more. If they make it to 30 without enlargement then they probably don't have Marfans or at least will not develop the aortic enlargement.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  10. #175
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    Quote Originally Posted by rohrer01 View Post
    Thanks, Linda.

    I actually had one doctor tell me he thought I might have Ehler's Danlos because of my hyperflexible joints. My nephew DOES have Ehler's Danlos. The geneticist said I don't have it. My hands aren't limber and my skin isn't stretchy. Although I don't have stretch marks from pregnancy, I think she said that stretch marks from pregnancy ARE another thing that it causes. I have the soft skin, though. I'm pretty sure my daughter DOES have it. She can bend her fingers down completely flat with the palm of her hand and her skin is SUPER soft. Poor thing also got bad stretch marks and has silvery wrinkly scars wherever she's been cut. She can do other weird things with her hands that look kind of creepy. She also has mild scoliosis, easy bruising, delicate skin, and flat feet.

    I have some kind of connective tissue disorder, just don't know what it is. Maybe a carrier of Ehler's Danlos would show "some" manifestations of loose jointedness, but not sure. There are lots of genetic things that work that way. I'm thinking it may be incomplete penetrance, where I am a carrier of the autosomal dominant gene, but do not have all of the classic symptoms. My daughter has so many of the classic symptoms that there's no question in my mind that she has it. But for MY health, it isn't an issue. My daughter would never get it checked out.

    My family has kept the doctors on their toes. My doctors just say I'm a "mystery". They're baffled, especially when new stuff crops up. My PM&R doc seemed to be thinking that straightening out my spine might help. But, like me, he's afraid that once it's done, it's done. If it turns out badly there's no going back! I think that's the biggest fear on the forum with presurgery people simply because it doesn't always turn out as nice as we'd like. There's no one that I can find that's ever seen a scoliosis like mine. My heart should NOT be affected with a curve in the 40's, but it is.

    You or anyone with a real interest are welcome to pass my x-rays along to scoliosis surgeons and ask some of your guys if they've ever seen anything like it. Especially the earlier ones before the lower curve progressed into the upper 30's. Then show them the progressive ones. Perhaps they will have seen it or know someone who has. THAT would be the doctor I need to see.
    Not to make it even scarier, but I think you have to consider what such a big surgery might set off medically. We commonly see patients who have things like fibromyalgia, MS, etc., that worsens after surgery. I have peripheral vascular disease for which the symptoms were pretty dormant before my surgery, but have raged back since then.

    When I get some time with Dr. Berven (my surgeon), I'll show him your info. It's hard to catch him with an extra minute. He is super conservative, and really only wants to operate when patients are in a lot of pain and/or have radicular symptoms, and have run out of other options. We see curves similar to yours occasionally.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  11. #176
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    Quote Originally Posted by LindaRacine View Post
    Not to make it even scarier, but I think you have to consider what such a big surgery might set off medically. We commonly see patients who have things like fibromyalgia, MS, etc., that worsens after surgery. I have peripheral vascular disease for which the symptoms were pretty dormant before my surgery, but have raged back since then.
    c
    When I get some time with Dr. Berven (my surgeon), I'll show him your info. It's hard to catch him with an extra minute. He is super conservative, and really only wants to operate when patients are in a lot of pain and/or have radicular symptoms, and have run out of other options. We see curves similar to yours occasionally.

    --Linda
    Well I don't have fibromyalgia for sure. They confirmed that with the EMG study. The doctor said that the muscles of fibromyalgia patients are very "quiet". Mine are extremely noisy. He said there were only two types of disorders with that loud of EMG's, stroke victims and people with muscle dystonia. My pain is muscular. They haven't for sure diagnosed MD, but everyone seems to think it looks a lot like that. I do have some peripheral vascular problems like mild Reynaud's. The BIGGEST problem, which is new, is dangerous and has to do with my upper curve and the dystonia combined. When the muscles clamp down, it not only pinches the nerves to my left arm cause excruciating nerve pain down my arm, but the dangerous part is that it is cutting off the blood flow to my left arm.

    The first time this happened, I didn't realize that's why my hand was swelling. I just knew I was in a heck of a lot of pain with my arm and needed to be seen ASAP. This last incident yesterday wasn't as bad because I recognized what was happening before it got to that point. Luckily I found someone to see me and get those muscles released. The difficult thing is that some of those muscles are very close to my lung which extends into the lower portion of my neck. The muscles are also close to the jugular and the nerve (which he did hit). If I go to the ER over a weekend for this problem, they won't have a clue how to treat it and would likely dope me up on more pain meds and tell me to follow up on Monday. My PM&R knew it was serious enough that he dropped his other patients and came and spent almost an hour working to release those muscles. I had cardio rehab earlier in the day and they weren't able to get a blood pressure or pulse from the left. What would happen if I had to wait all weekend like that?

    I feel like the biggest danger, at this point at least for surgery is the fact that I'm so darn skinny. I weigh a whopping 113# on a 7' scoliotic frame, slightly anemic, and hypokalemic. I have the muscle problem that will make it difficult to recover as I'm losing muscle and not gaining it. I'm losing neuro function, too. I can't walk on my heels or my toes anymore. This has all transpired in about the last year and a half.

    I'm in a really bad predicament. I think they could control the heart thing with enough of the right meds. I don't know what about the digestive issues and my difficulty in swallowing. I guess an NG tube would take care of that temporarily in a surgical situation if I couldn't swallow.

    Thank you. Even if you can't get anyone to look, it's okay. I need new x-rays. My newest ones are two years old and my lower curve is progressing if you look at my 2005 compared to my 2012 films. That lower curve used to be in the teens. As far as protective angle on curves, I don't believe there are any. I think it depends on other factors going on with the patient. That curve should have NEVER progressed.

    I'll be requesting new x-rays for May. That will be, I think, exactly two years. Hopefully by then I'll know if anything shows on the DNA test (I haven't had it yet, waiting on insurance approval). They will also be doing another MRI. It sounded like he was thinking whole spine and not just lumbar because of what's going on up higher. So, probably by May I'll know more. I'll just hope nothing serious transpires between now and then. :-O
    Last edited by rohrer01; 03-23-2014 at 10:22 PM.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  12. #177
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    Quote Originally Posted by Pooka1 View Post
    My daughters have this. One got a minor scrap on her chin and it left a scar! That is crazy. The other has a few "smiley face" smiles coming off perpendicular to her surgical scar where the skin just seems to give way. Very strange. They are both being monitored for Marfans which if they don't get the aortic enlargement is not going to be an issue any more. If they make it to 30 without enlargement then they probably don't have Marfans or at least will not develop the aortic enlargement.
    Maybe they should be thinking Ehler's Danlos. It carries similar cardiac risks and there is a genetic test. There are several "varieties" that they test for. They have located several "genes" that contribute.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  13. #178
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    Hi rohrer1,
    I have been away from the forum for a long time. I am so sorry for all your troubles. Rare diseases are truly problems for you and the Doctors. My thoughts and prayers go out to you.
    Sally
    Diagnosed with severe lumbar scoliosis at age 65.
    Posterior Fusion L2-S1 on 12/4/2007. age 67
    Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
    Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
    New England Baptist Hospital, Boston, MA
    Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

    "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

  14. #179
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    Quote Originally Posted by loves to skate View Post
    Hi rohrer1,
    I have been away from the forum for a long time. I am so sorry for all your troubles. Rare diseases are truly problems for you and the Doctors. My thoughts and prayers go out to you.
    Sally
    Sally,
    I just saw this. Thank you for your concerns and your prayers. It means a lot when we care about each other. I'm still waiting to hear from the insurance company if they will approve my DNA testing. She must be fighting with them! She's a really awesome doctor and doesn't seem one to take NO for an answer. I hate fighting with insurance companies!

    My heart seems to be doing better since my potassium levels have been brought up to normal. I had an incident last weekend where I ended up in the ER because of my heart. I was having angina like symptoms which were helped by the nitro tablets. But then my heart took off like a racehorse! It went from 110 to like 117 to over 200 lying down! I know it's over 200 when I can no longer count the beats. So I called 911. By the time the paramedics arrived it has slowed way down to 120. By the time I got to the hospital it was in the 90's, then 80's, then 70's. I felt like an idiot. I took my heart pill and klonopin a little late and I think everything kicked in by the time I got to the hospital. But it turned out to be a good thing I went because my hemoglobin was only 10.6. Two weeks earlier it was 11.8. So something's going on. I haven't been back to the doctor, even though they wanted me to go right away because of the blood thing. My doctor was out of town that week and then they cancelled my Tuesday appointment on the 8th and moved it to the 10th because he has a conference to go to! I'm sure I won't drop dead before then. LOL

    So it cost me $100 to find out that I'm losing blood somehow. There's no GI bleed. They embarrassingly checked for that and no occult blood was found. So I wonder which of my internal organs is chewing up my red cells? I guess we'll find out. I'll have blood work done on Thursday and I'll post the results here.

    I know what I just said doesn't sound like my heart is doing better. It is better when I exercise. I still get tachycardia when I stand for too long or eat too much. The combination of the two is just pure disaster! LOL So it's not better enough that I'll cancel my cardiologists appointment this month.

    Hugs to all!
    Last edited by rohrer01; 04-06-2014 at 09:58 PM.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  15. #180
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    Wow, that heart rate must be very scary. I hope your Docs can get to the bottom to this and also the low blood count. The two things could be related. Please take care of yourself and let us know what your Doctors find.
    Sally
    Diagnosed with severe lumbar scoliosis at age 65.
    Posterior Fusion L2-S1 on 12/4/2007. age 67
    Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
    Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
    New England Baptist Hospital, Boston, MA
    Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

    "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

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