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Thread: I have some imaging CD's

  1. #211
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    Hi...

    Initially, I was really surprised to hear that the physiatrist didn't order a sagittal view. Then, I started thinking about it and realized that the physiatrists we work with probably don't even look at xrays, as it doesn't tell them what they need to know. They work almost exclusively with MRIs. I'm not sure how important a sagittal view is in your case, but it would be nice to have the film to document the history.

    --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

  2. #212
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    Linda,

    I wrote and asked the neurosurgeon if he would order the sagittal view. I haven't checked if he's responded, yet. I'll let everyone know how the appointment goes. It's on the 11th.

    Thanks!
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  3. #213
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    My last set of x-rays done last two weeks ago showed that I am perfectly balanced in both the coronal and sagittal planes. The neurosurgeon said that any progression from here on out would be from age related spinal degeneration.

    The bad perspective of this from my point of view is that I have no neck lordosis, no thoracic kyphosis, and very little lumbar lordosis. My problem with this is that all of the natural impact hits my spine sideways instead of the natural way it's supposed to be cushioned by the natural kyphosis/lordosis. This causes a great deal of pain. I totally agree with the doctor that surgery would not solve my pain issues. I know this because my DIL is fused in a similar fashion that I would be (I would have a little longer fusion by a vertebra or two) if I had surgery. She has very similar pain patterns as I do. She also has a nearly stick straight spine because her surgeon wasn't able to restore her thoracic kyphosis which caused the rest of her spine to lose its natural lordosis to compensate. The poor girl is so young!

    My SI shots must have worked because I'm up out of bed doing things! The bad part about that is it's caused my pain level to shoot back up. It's worth it to be able to do stuff even though my narcotic use is back up. It's at least not back up as high as it was. I have some wicked sciatic pain that goes from my sacrum all the way down one leg or the other. Today/night it's my left leg.

    I've also had foot/leg swelling for months. I mentioned it to my doctor that it was when I was up doing anything. He brushed it off as age related. But, what I didn't think to tell him was that it's when I'm NOT doing anything, too, until I was looking at my feet the other night after a day in bed. I realized that when I was bedridden from pain my legs and feet were swollen. I mentioned it to him again today. He said the only thing he could do was to add a diuretic to my diet of pills. I reminded him that I'm in stage 2 renal failure and we both decided it wasn't a good idea since diuretics are also hard on the kidneys. Now I'm thinking about TED hoses for my feet and legs. Any feedback on that...anyone?

    I'm pretty sure you need a Rx for those if I remember correctly. I'll call the office or write in and ask about that tomorrow.

    Any other feedback about my other issue would be welcomed as well. I'll post new pictures as soon as I go to the radiology department and get them. I also want to get the doctor's notes on my barium swallow and rectal test as well.

    I hope you all have a great day/night!
    Rohrer01
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  4. #214
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    It's me again. I finally went and got the radiologists notes and the CD's of my last x-ray and full spine MRI. My scoliosis actually progressed by 4o on top and 6o on the bottom AND I'm developing a lumbar curve. The lumbar isn't "scoliosis" yet at only 6o, but it was at zero. So yes, I'm progressing faster than one would expect for a curve under 500 BARELY, now. These guys at this hospital are super conservative on their measurements as well, the most conservative I've ever seen. Dr. Perra at TWSC would definitely measure me over 50o as he is less conservative.

    As to the treatments to help my range of motions on my neck, who knows? Are they making it worse. My back is sinking in pretty far between my shoulder blades. They didn't measure that. I get Botox every 90 days and trigger point injections every two weeks. It's grueling but necessary.

    My neurodegeneration has me falling as I'm sure I've already mentioned. However, my last two falls could have been life threatening, as if the concussion wasn't. I had a nice remission in my walking ability and took advantage to take a friend hiking. I can't walk downhill and we were on rough terrain. But with the aid of walking sticks (meant for downhill cross-country skiing training in warm weather) I did just fine even with my weird leg posturing. I was able to climb up to my favorite cave, which has a rope for security. Coming down, it was easier to do facing forward. My body decided it wanted to fall backward, no where to go, right? Wrong! It propelled me around and I ended up slamming my side against the rock face. I didn't think I was hurt until the next day and stupidly waited all weekend to seek medical attention on Monday even though my legs and abdomen swelled up HUGELY (internal bleeding, right?). It was late and I was clearly not thinking clearly. So on Monday I went to my hometown medical office where the PA said I had a bladder infection. I urinated about a tsp 1/2 of straight blood and there were white cells in there. So I took my one pill of antibiotic for the day, but had another appointment the following day at the "big" hospital, no it really is on the nation's top 50 hospitals, just no scoli doc there. So my appointment was for Botox, but I was still sore on the side that I swelled up on. I just wanted to know if I had a rib fracture, so I went to urgent care - so I thought. They have three levels there: 1. Urgent care, 2. Emergency Room, & 3. Trauma. As I was being wheeled off to the CT scanner I asked the technician, "I'm not in urgent care, am I?", Duh! I was in TRAUMA! The trauma doc did NOT believe I had a kidney infection, since NO white cells were detected after only one dose of antibiotics. He surmised that I had damaged my kidney and possibly had a small liver laceration. But, since I waited so long to seek real help that they were healing on their own. SCARY. I'm just glad I didn't bleed to death in my sleep. I don't know why I'm so stupid about getting to the ER when I KNOW I'm truly hurt. I need to stop that. That was July 3rd that I had the injury and I didn't get real help until the 7th!

    Moving along, it was mid-August and I thought my balance felt fine, so I thought I would take a little bike ride with my grandson. NOT! I can't ride a bike anymore. So I gave up trying. I was just sitting on the seat of my bike watching my grandson get up from a minor spill down a grassy hill next to my yard. The next thing I know I'M the one rolling down the hill! It was a flip backward as the bike stayed on the sidewalk and I didn't. My right knee looked really banged up and as bruised and bleeding from a pretty clean laceration from I don't know what. It was my left sided ribs that really stung. I lay there for a minute, poor grandson thinking I'm dying from my knee (I didn't even feel any pain there - he pointed it out). So it started feeling better and I went on to play kickball. Later that evening my left mid-gut on the left started hurting REALLY bad. I'm thinking to myself, "there's nothing over on that side...?" Then I thought SPLEEN. This time I DID go to the good hospital where I was treated very rudely by the intake nurse who sent me to URGENT CARE unbeknownst to me. I couldn't understand why they weren't taking me seriously. Because I have a pain contract so they were hesitant to even give me anything for pain. They took an x-ray and I did have a broken, NOT cracked rib. I was told to go home and see my PCP the next day. When I called them they told me to get straight back down there. It was morning and my son took off work to take me. By this time the pain was so bad I couldn't even walk. This time I ended up in TRAUMA again. They tried to lay me back and I swear the whole hospital could have heard me scream. It was worse than childbirth! The doc said, "I'm not touching her until you get pain meds into her!" They gowned and doped me and I was finally able to lay down. The ultra-sound didn't show a ruptured spleen. They put me on a lidocaine patch around the broken rib and wrapped me. I thought the practice was obsolete, but was really done to keep the patch on. I was instructed to come back if the symptoms didn't improve. The belly pain persisted even though the rib felt better, so I went back. This time to the ER where the lady doctor left me literally crying in pain for an hour until I could get into the CT scanner. Then she wanted the meds pushed right before the scan. Well even though it was in my IV, they didn't take hold and I'm crying like a baby trying to switch tables. The belly pain was so severe! I found out that a spleen can rupture DAYS after an injury like that, thus the instructions to come back. Thankfully, no ruptured spleen. What happened was the nerve that ran along the rib to that organ was bruised causing it to feel like it was damaged. So, because I had a full break in the rib it's a roughly a 12 week recovery time rather than if it were cracked which would have been about six weeks. Ugh! So I diligently did my breathing exercises, which was super rough. I had to do it 10 times every waking hour as I was scheduled for wrist surgery only two weeks after the break.

    Gradually the belly pain got better, thankfully before my surgery. The surgery went great with about a week of healing time of surgical pain vs. the MONTHS that it took the two times I've had it operated on before. I asked my grandson's pediatric hand surgeon (another long story) that operated on him when he was only two, if he did adults. He agreed to do my wrist and BOY oh BOY does it make a difference in the quality of surgeon you have! I'm sure the same holds true with these back surgeries... I know now I just might be headed that way. I'm pretty sure that I won't pick "my" surgeon. He's not consistent with what he tells me and he loses a LOT of blood, or rather his patient's do. My rib still aches, but I'm still within my 12 week period. I stupidly took my grandson to the county fair and was talked into going through a funhouse that is designed to make you fall at every turn. I made it through the whole thing with him until the end. It had a giant tumbler you have to run through. With my walking troubles (I thought I was in full remission, NOT) I kept falling. The first time I fell I told the carnie to shut it down. He ignored me. I tried two more times, each falling on my wrist (forgot my wrist guard and was only two weeks out) and my RIB. So finally I just stood there with a zillion kids behind me and yelled at the carnie to shut it down, I have a disability! So finally he did. But I think that set me back with my rib because that's where I primarily landed, thus the rib aches.

    I took myself off of the gabapentin. Hubby looked it up and one of the side effects was water retention. It said to inform your doctor right away if this happened. But as I mentioned before he ignore me. My feet were so swollen in literally hurt my ankles to walk. I weaned down week by week an my ankles finally quit hurting and I lost 10# of pure water weight!

    So that's my story. If my scoli keeps progressing at the rate it is...over 2o per year. I may end up having surgery. I don't know. This neuromuscular disease that I have is so unpredictable that I will have to weight the benefit/risk ratio. My neck and upper back are in constant pain, but it's a dangerous area to operate on. I will keep you all informed. I haven't forgotten any of you and the encouragement you've given me over the years. I'm not even sure if this thread is appropriate here anymore since I don't have idiopathic scoliosis anymore... Linda you can decide that one if you wish.

    Thanks for all of you who've plowed through my very long post. I need to post more often, but honestly have been tired of getting on the computer. There are quite a few of you near and dear to my heart. You know who you are and I'll probably get courageous enough to share e-mails over PM one of these days. The support here is great and I'm immensely grateful for this forum. It has been a real life saver.

    Love you guys!
    Rohrer01
    Last edited by rohrer01; 10-23-2015 at 06:01 AM.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  5. #215
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    Rohrer...

    It is definitely appropriate.

    Sorry to hear that things continue to worsen. I can't remember... have we ever discussed camptocormia or bent spine syndrome? I'm starting to see more and more similarities between you and several of our patients.

    --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

  6. #216
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    Hi Rohrer! I've thought about you often and wondered how you are doing! It sounds like you have had some major difficulties plus the progression, and I am so sorry. Thank you for posting the update. My gosh, you have done some pretty brave things, what with your hiking and biking! Now if only you can cut down on the crashes and breaks! That is pretty scary... Sending love and hugs your way- Susie
    67 and plugging along...
    2007 52 w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15
    CMT (type 2) DX in 2014, progressing
    NEW 10/2018 x-rays show spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  7. #217
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    Rohrer! Thanks for posting. I wonder about how you are doing. Nice hearing from you.

    So sorry about the falls. Please take care.

    Sharon
    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."

  8. #218
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    Quote Originally Posted by LindaRacine View Post
    Rohrer...

    It is definitely appropriate.

    Sorry to hear that things continue to worsen. I can't remember... have we ever discussed camptocormia or bent spine syndrome? I'm starting to see more and more similarities between you and several of our patients.

    --Linda
    I've never heard of that before...(I will be looking it up). Is it a disease or a symptom, possibly both? I honestly think this is some unknown dystrophy. It has scoliosis as a symptom, but not ALL of my family with symptoms have scoliosis. My dad didn't and my sister doesn't. When I went for my Botox on Tuesday we heard the "dive-bomber" sound that my neurologist was looking for to confirm MMD. However, I was genetically tested for both types and came up a big fat zero. But the CMT gene had two mutations, a carrier for a less dangerous recessive form and an unknown mutation on an area of a dominant and very dangerous form of CMT. Who knows, this could be something totally new, especially with the dive-bomber EMG. That is usually diagnostic for MMD.

    My curves are a very conservative 46o, 38o, and 6o from THIS hospital's last report of 42o, 32o, and 0o. That's only in two years time. I know that Dr. Tribus told me 46o, then changed his mind and Dr. Hey said 46o the same year. But I'm going by what THIS hospital says as a comparison because they have always been on the very conservative side and I'd rather go with the same institution, conservative or not, for comparison.
    Last edited by rohrer01; 10-24-2015 at 04:04 AM.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  9. #219
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    Oh, I definitely don't have camptocormia. I stand very tall. My neck will only droop because of the Botox injections. But it never droops unless I'm looking down as to read or to write. However, my neck muscles get tired and will sometimes spasm or just plain make my cervical and upper thoracic vertebra hurt.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  10. #220
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    Susie and Sharon,
    I didn't forget you! Thanks for responding and thinking of me.

    I'm glad that you both have a sense of "normality" to your lives now if there is such a thing!

    Sharon, I hope your girls are still doing great. It's actually very nice that you stay here and encourage other people since your girls are done and moving on with their lives. The same goes for you, Susie. You could have dropped out after recovery like many do, I'm sure. TiEd's another one who persists in trying to be helpful an positive. I surely appreciate those of you who continue on here years after... There really are kind people in this world. :-)

    My DIL isn't faring as well as she went to a sub-par surgeon. Her parent's didn't know any better and knew nothing of Shriner's Hospitals for children. She has constant pain above and below her fusion and the doctor didn't do the greatest job untwisting her. I don't think it really started to bother her until she was like 21 or 22, but then she was doing heavy construction work. I think it put too much stress on her lower and upper spine. She's needed daily pain meds since she was about 23/24.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  11. #221
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    I'm leaving a LOT of the other similar post out, as I see I have already updated on things mentioned there. So here is why I'm sad and frustrated with my hypokyphosis.

    I have concerns that about brought me to tears after coming home from a visit with the GI doctors yesterday. Due to the events mentioned above, there are a LOT of imaging studies on me. I've had a CT/angiogram, two recent CT scans with contrast and several x-rays for abdominal pain. I have difficulty swallowing and have had several very unpleasant tests done for that. After the doctors collectively reviewed my scans after my swallow study came up abnormal, they were able to rule out a tumor or scar tissue around the opening of my stomach (cardiac sphincter), which is constricted. Oh, and after an endoscopy, I found out that my stomach is twisted just enough that it could easily twist around, which is an emergency.

    What they DID find that has me concerned is that my aorta is putting pressure on the cardiac sphincter. My heart is already displaced and deformed, along with all of the valves due to underlying scoliosis. My reason for writing this is that all of this is caused by the severity of my hypokyphosis. Apparently there is no room for a trachea, esophagus, heart, stomach, or even an aorta in the very limited space that I have between my sternum and spine! Of course, the heart is the first thing to move, but I never would have attributed my GI issues to my scoliosis. That aorta has me freaked out!

    I wish the doctors would quit focusing on frontal angles and look at what the hypokyphosis is doing to people. They don't pay any attention to the sagittal view except to see if you are leaning forward or backward. No measurement was taken of my hypokyphosis. I think I'm going to e-mail that neurologist and ask for another referral to see my scoli doc, just to discuss it with him. IF I ever have surgery, I don't want to wait until my muscle disease progresses so far that it puts me at too great of a risk.

    The only options the GI people gave me are the choice of two meds (I'm already on one). The other one is Viagra! She says it causes headaches and blurred vision, things I already fight with, no thanks! Option two is Botox to my cardiac sphincter which WILL cause acid reflux, no thanks, again. She said my final option if I wouldn't do that is to eat pureed food. No thanks there either. See why I want to cry? Grrr... I said I would puree it with my teeth! LOL

    I never really stopped to think about ALL of the implications of hypokyphosis! Yes, I was alarmed when I found out about my heart. But it is working fine. I never realize how it affects everything else. I always thought one of the "benefits", if you will (no offense meant), to having scoliosis and being fairly balanced was my very straight posture. It hides my curves and I can dress around it and no one can even tell I have scoliosis. I can tell you first hand that there are no benefits to having such a small space to fit so many vital structures in!

    Sorry for the very long vent. I just thought more people would read this if I posted here. I felt it was important to get this information out. Maybe one of the scoli docs will read it and take hypokyphosis more seriously...

    I'm tired of all the torment I go through with the tests and treatments... :'-(

    Sad and afraid,
    Rohrer01
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  12. #222
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    Dear Rohrer - I appreciate the update and want you to know you're in my thoughts and prayers. How good of you to warn others about awareness of hypokyphosis and its possible complications, all in the midst of your present worries.

    I am so sorry about the GI problem, as my sister has that as well-- has for years and years. We live 2,000 miles apart and I haven't asked about her problem lately, as she has many other medical issues as well (LUPUS, lung, etc). I DO know that she has had to go to the ER and then admitted to the hospital due to total stomach twisting/cutting off that was life-threatening at least once or twice and so for several years has been very strict about what she eats. She appears to eat fairly normally but there are many foods that don't break down at all, (fiber foods, I think), no matter how much you chew... so they can cause blockage at the twist/turn. So she is very selective.

    Did your swollen feet/leg problem completely go away when you stopped the gabapentin? I have that problem and I have a swollen throat problem also, Mallampati score of IV. We can talk more about those if you want. I think mine are related to the CMT. Take care-- and thanks again for letting us know how things are going. You can get through this. You are a determined person!
    67 and plugging along...
    2007 52 w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15
    CMT (type 2) DX in 2014, progressing
    NEW 10/2018 x-rays show spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  13. #223
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    Susie,
    Yes, the swelling went completely away eventually. I lost about 10# of pure water weight. I believe that's about a gallon of water! It hurt my ankles to walk. Sadly, that water was the LAST to go. But it finally did. I titered down on the dosage as you are NOT to quit suddenly. It was developed as a seizure medication first

    Hang in there with the CMT. I did read on the MDA official website (I'm pretty sure that's where) that you can have symptoms even if you are just a carrier. It depends on the type and severity of the CMT. I'm sure there are many mutations on that gene that they aren't aware of, yet. And yes, I've heard of CMT forums. I think all forums are similar, but they all have their own formats and things that are and are not allowed. I've checked out other scoliosis forums and read some experiences. I never joined because the format here is easier to follow. Plus, there isn't as much pseudoscience here.

    I had a nice talk with my niece (the one who I suspect is affected with the "whatever" it is we have). Her neurological symptoms are WAY worse than mine were at her age. She's only 31 and already has the sciatica down both legs to her toes. She has numbness in places including the center of her back AND a whole lot of pain that no one will treat her for! They're so stinking afraid of people becoming addicted to pain medication that they forget the human suffering factor. She also has scoliosis and will be finding out the magnitude of her curve/s soon. I'm pretty sure she's not surgical, but with this "family" disease, I think it is the cause of the scoliosis being more painful than average. The only thing she's been tried on is ibuprofen (which helps her the most), Aleve, and Diclofenac, which neither of those other two work for her. She has FIVE children, works and goes to beauty school FULL time. She's fortunate to have my sister to help. But my sister is "affected" as well and has adopted five children other than her three biological children. Four of these children are small. So my sister watches NINE children (only four of the nine are in school) all day long every day except maybe the weekends. I'm glad that my niece reaches out to me on occasion. It's helpful to get an empathetic ear, not saying her mom isn't. Her mom, my sister, being affected is just worn to the bone by mid-day, but is fortunate to have pain medication and be able to stay home with the kids. It wouldn't surprise me if my niece decided to move in with me temporarily and settle in my state as we have a much better health care system than the state she lives in. She would also be able to see the same doctors that are familiar with my case and get more of the help she needs. We'll see.

    Take Care,
    Rohrer01
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  14. #224
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    Thanks so much, Rohrer, for the informative post. So sorry to read about your niece-- so busy and with so many problems. I read about people who are terribly afflicted with their CMT in this facebook group which is directly part of the Charcot Marie Tooth Association; the little children are the ones that break my heart (parents writing about them). The one thing that is easier on facebook than in a forum is that you can merely "like" a post, jump in with a comment, show encouragement... you don't have to post.

    I think I already told you that mine is CMT2 based on the EMG and nerve conduction study. My neurologist sees no need to do genetic testing since my mother had CMT and we have narrowed it to this basic type. There are so many CMT variants that genetic testing doesn't test for, and it's so expensive. So I guess I'll settle for knowing it's an axonal CMT, not myelin sheath. I have been having, on and off, a lot of horrendous burning with extreme pressure type pain in my legs at night. In my "twilight" the other night, all I wanted was to have my legs amputated at the knees! Oh dear! Of course that is not going to happen and I don't need that, but at the time the pain was so intense. Fortunately it isn't like that too often, but twice in the last 2 weeks. I ALWAYS (as in every night) have stinging and cramping in my feet that causes contractures-- really hard to stand up when you can't straighten your feet out from a rigid clawed shape from heel to toe. Sometimes it is in my shin and/or calf as well. I know I'll get through this ok, but it's not much fun. So far my drop-foot hasn't progressed too much, so I can get around fine. I just can tell I'm losing some of my former strength.

    All in all, I consider my situation to be do-able and am busy with life. "You get what you get and you don't get upset" or "you git what you git and you don't throw a fit"... always fun sayings from when I worked at the elementary school. Ha ha! They fit so well with other aspects of life...

    Take care and keep us posted. I have had this thread open forever, intending to answer, but have been very busy. I am taking my first online course and it's been interesting learning my way around the technology part of it as well as the course itself. Hugs, Susie
    67 and plugging along...
    2007 52 w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15
    CMT (type 2) DX in 2014, progressing
    NEW 10/2018 x-rays show spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  15. #225
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    Wow, Susie!

    That burning/stinging/stabbing pain is something I fight in my lower sacral area and down my left leg. I have more of a tooth-ache down the right, which is how the left started.

    I just has bilateral SI joint injections and they gave me a ton of steroid because I got thrush afterward, lol. NOT fun. But the injections gave me about 75% relief, not saying the pain is gone. I couldn't stand to have anyone sit next to me on the couch or in bed as every time they moved it sent that jolting pain into my back and down my leg. It feels like bee stings in multiple areas at once and runs down a pathway! No fun at all.

    My feet have been hurting. My heels hurt where they touch the bed and my toes hurt where the covers touch them. It wakes me up at night. My feet don't cramp or have high arches like yours, though. I actually lean more toward flat-footedness. My daughter is completely flat-footed. But I suspect she also has Ehler's Danlos. Her cousin does. I don't, but am more flexible than most people my age except my hamstrings.

    I'm having more pain symptoms down my arms now. It's funny that my EMG's always show up "almost" normal. That's why they are having such a hard time even with my leg pain. It just doesn't show anything...

    Just frustrated. It sounds more and more like a CMT type disease the more I talk to you, though. I have an unknown mutation on "the worst" CMT gene segment and I'm a carrier for a lesser type. I would have never thought of CMT. My geneticist is the one who thought to test me for that. They really thought it was MMD and are still baffled but have given up on finding a diagnosis for me for the time being. That's discouraging to me as I become gradually paralyzed.

    Take care,
    Rohrer01
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

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