Page 1 of 3 123 LastLast
Results 1 to 15 of 36

Thread: Charcot Marie-Tooth (CMT)

  1. #1
    Join Date
    Mar 2010
    Posts
    2,755

    Charcot Marie-Tooth (CMT)

    Well, folks, that is my diagnosis after my DNA testing. I feel it belongs here because scoliosis is one symptom of this disease. So I will use this thread to talk about CMT even though this is a scoliosis forum. There are those of us that have special issues relating to a CMT diagnosis that may have a direct impact on our scoliosis from pain to severity to what kinds of exercises to do and NOT to do (walking is a big NO NO believe it or not) to whether or not to have it surgically corrected.

    I don't know what kind of CMT I have, yet. My appointment is next week. But if there are others out there suffering from the same thing, feel free to talk here.

    The incidence of this disease is 1 in 2,500 people. It sounds like a long shot, but this is actually the most common neuromuscular disease out there.

    The month of September is CMT awareness month, too. How ironic that I found out in September! LOL They have their own website so feel free to visit it. You can get there through the NIH website since I don't have their web address handy.

    I will do my best to answer any questions. One question I have to find out for myself is whether or not my scoliosis is still classified as idiopathic since it really is secondary to CMT, just like my muscle wasting.

    I will post more as I know more. I will still keep my timeline thread (I have some imaging CDs) alive during this. That thread has proven invaluable to me. But this one may prove invaluable to other CMT sufferers.

    You all have a great day!
    Rohrer01
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,802
    I'm surprised to read that 1 in 2,500 people have CMT. We actually have very few patients with the diagnosis. Maybe there's a whole bunch of people who haven't been diagnosed.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  3. #3
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,905
    Wow Rohrer, finally a diagnosis.

    There was a girl who putatively had that diagnosis on the forum several years ago. Scoliosis is associated with it so there is no issue whatsoever for posting about it.

    I have read about CMT in the past and I don't recall any mention of some of your symptoms. But the DNA does not lie.

    Now you can proceed with knowledge.
    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."

  4. #4
    Join Date
    Mar 2010
    Posts
    2,755
    Quote Originally Posted by Pooka1 View Post
    Wow Rohrer, finally a diagnosis.

    There was a girl who putatively had that diagnosis on the forum several years ago. Scoliosis is associated with it so there is no issue whatsoever for posting about it.

    I have read about CMT in the past and I don't recall any mention of some of your symptoms. But the DNA does not lie.

    Now you can proceed with knowledge.
    My symptoms do fit. Chronic pain and fatigue. I can no longer walk normally. My calf muscles are gone so my lower legs are really skinny. My balance is bad and I'm uncoordinated. I've started falling. My strength is so bad in my legs that I can't do a sitting leg lift of only 12 pounds with both legs together. I've deteriorated so much since May. There are so many really weird things going on. At first I really thought it was Muscular Dystrophy, too. My symptoms are similar. That's why CMT is listed on the Muscular Dystrophy Association's website as one of "those". ALS also is listed as a dystrophy even though the muscles test negative and there is only a diagnosis by exclusion. With how fast my dad died after he could no longer walk normally, I thought for sure ALS. There are many kinds of CMT. Some are not so bad and can go undiagnosed, as Linda mentioned, and others that are real monsters. I think I have a monster with what's been happening to me. But, I won't know until Tuesday.

    Yes, I felt fine having a CMT thread because it does relate to scoliosis. I have a pregnant niece who has pain and fatigue and scoliosis. She's going to get tested, too.

    It started spontaneously with my dad.

    Oh, I also have extreme weakness in my arms and wrists. I dropped all of my groceries once because I thought I was still strong. Cooking with large pots is very dangerous for me. My whole body quivers from the weight of a cooking pot. I did some canning over the last couple of days, probably why my concussion headache won't get better, and I knew I'd pushed my limits and put myself in danger.

    I am also getting a walker soon. I have just gotten my disability card and my doctor signed "permanent".

    So sorry this is chopped up. My thinking is kind of scattered. I have problems with my hands. But I've had problems with my hands for years. It's the one thing that kept me from being a top-notch musician and I opted for the sciences (I love them, too!). I could never move my fingers fast enough when I need them to. My sister can't even button her own shirts. Her hands are worse than her legs. I would have to say my legs are worse than my hands. If only you guys could have "seen" me when I first joined the forum and "see" me today. My daughter hadn't seen me for a couple of months and when she saw me walk and really got scared. She really NEEDS to be tested but is resisting. But it's only been a day. I hope she does get tested and is negative. Then I know my grandson will be fine. I'm worried about them all (kids/grandkids) more than myself.
    Last edited by rohrer01; 09-05-2014 at 11:10 PM.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  5. #5
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,905
    Okay then. You know what you are dealing with. Knowledge is power.

    Take care.
    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. #6
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,802
    Rohrer... Has anyone talked to you about cervical myelopathy? I don't know if your hand weakness issues are normal for CMT, but it's definitely normal for cervical myelopathy.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  7. #7
    Join Date
    Mar 2010
    Posts
    2,755
    I have cervical dystonia. It pinches both the blood vessels and the nerves. The muscles involved are near the brachial plexus. But, in general, my hands aren't weak. They are more shaky and I have one finger that twitches on my right hand. And, as I said in the other thread, I can't move my fingers fast enough to be a really good musician. That's what tipped the scales for choosing a college major. I don't have to have fast fingers to be a scientist. I wanted to be a doctor when I was going into college, then settled for nurse, then achieved neither! But my hands weren't shaky back then. Even now they aren't shaky unless they are under some strain. That wouldn't be good in medicine either way!
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  8. #8
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,557
    Rohrer, you have known all along that something was happening to you.....and the dropfoot, falling, twitching, dizzies,weakness, fatigue etc are all signs of things that are extremely difficult to pinpoint. I guess the repeated visits to doctors has to happen in order to finally know whats happening.

    And scoliosis now becomes secondary.....

    I wonder sometimes if actually knowing is an advantage, at least with a terminal disease. I dont know if I really care to know. I have to worry a tad about all of this due to history of ALS in my family. If I get it, its called FALS. I try not to let these things be over-consuming.....Semi-ignoring like I did my scoliosis many years ago is probably best for my sanity. My dad was a scoli also....thoracic only, not lumbar....

    And yes, exercise at least in ALS is not, or was not, advisable. Some range of motion yes, exercise no. I almost think that if you cant build muscle normally that its a signal. They will fill you in as far as CMT is concerned....Im sorry about all of this.

    Take things one day at a time.....

    Ed
    49 yr old male, now 59, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  9. #9
    Join Date
    Mar 2010
    Posts
    2,755
    Ed,
    I understand where you are coming from as far as there not being a treatment for a terminal illness. It greatly affects my family, however. My daughter and son have not inherited idiopathic scoliosis. They have likely inherited CMT. I don't know about my oldest boy, as he doesn't have scoliosis. My grandson, at age 4, has a slight curvature around T9. I told the doctor that I saw his x-ray and thought it looked suspicious around T9. Now this isn't some general practitioner. He is the head of pediatrics at a major hospital. He saw what I saw. My grandson has the same rib hump that I do. This changes everything if it is CMT. It means that likely two of my children and my grandson are all going to have to live with this.

    My symptoms were so vague. My daughter was honest with me today and told me that she thought I was seeking attention until we'd been separated for a few months and she saw me walk. She knew at that moment that I had never been faking even though I didn't have my diagnosis, yet. She said she felt sad and ashamed. I have been treated that way pretty much my whole life. It isn't until recently that the symptoms started to progress exponentially. But they've been there from the day I was born with slightly clubbed feet that are normal now. I grew up being called a hypochondriac because I was in pain as a child! My daughter has complained of pain since she was old enough to verbalize it. Me and every one of my kids suffer chronic fatigue, although we all keep it our "secret" and have never complained to a doctor about it. I finally did admit it to the doctors early this year. My dad was "lazy". He suffered his whole life being called LAZY because by the time he got done working 10 to 12 hours he could barely stand and would fall asleep on the couch. If he had been diagnosed, people would have been more understanding and perhaps not called him names when he was doing all he could do. I know how that feels. Having this diagnosis, whether I have fatal CMT or not (not all are fatal) gives me the right to say, "I am not lazy. I'm doing the best that I can." It feels very vindicating and freeing in a way that I can not even describe.

    I had a psychologist say I had hypochondriasis when I had an MMPI for a surgical procedure that I thought about for NINE months before coming in. It was my former pain specialist that suggested the procedure. The psychologist did say, "Even though you scored high on the hypochondriasis scale, it's interesting that you really do have pathology. But I'm not going to recommend you for any surgical procedure." When I saw the pain doctor, the first thing that came out of his mouth was, "Why are you surgery seeking? The only thing I will do for you is give you an epidural." Now remember, I thought about this procedure for NINE months before I even considered coming back and talking about it. I was then FORCED to get psychiatric help for my hypochondriasis. If I refused, the hospital would refuse to treat me. How does that make a person feel when there really IS something wrong? No, I don't care if I have the terminal kind of CMT for myself (I do for my kids/grandkids). I won't have to be treated like a faker ever again. Fortunately, the rest of my doctors ignored the hypochondriasis "diagnosis" because they were all treating visible pathology. It's just that the dots were not all connected. It was my physiatrist that got the ball rolling for me to see the neurologist and finally the geneticist (which every hospital doesn't have). I have a friend that is a Ph.D. geneticist who could see in my dad something "dystrophic" in nature. She also said that the M.D. geneticist that I had was very well respected and came highly recommended.

    For CMT there is no cure, but there are treatments. These treatments can drastically alter one's quality of life, which in turn can lengthen ones quantity of life. The treatments are PT/OT/physical aids such as braces, walkers, etc/ and surgery. I haven't read a whole lot about the disease on purpose until I find out what mine is. My letter from the genetic counselor basically said, "We've located the results of your CMT test. Mutations in the DNA were found. Please make an appointment with me to discuss this matter." That's not quite word for word, but pretty darn close. I've never met the man. I had to write in to see what the hold-up was. I gave my blood sample in February or March and the MMD tests had been back for quite awhile. I'm a little upset that my results have probably been sitting around for awhile while I deteriorate exponentially and could have already started treatment.

    I was receiving some treatment at the Heart Center at my hospital. But they didn't know what was wrong. Instead of my muscle strength and stamina improving, it was getting worse. Part of my treatment there was the treadmill which is contraindicated in CMT. I took myself off the treadmill because it was too hard to do with floppy legs and I was having to decrease my speed to below warm-up level. I was going to continue at they gym but decided not to because I didn't really know what I could or should do. I couldn't even lift 12lb with both legs! I had a treadmill at home that I couldn't use. So I found a family and payed it forward. My mom had given me the treadmill so I could walk out of the cold in the wintertime. I asked her if she wanted it back and she said to sell it and try to make some money. I couldn't do that since it was given to me, so I payed it forward to a friend of mine where the whole family will be using it. Meanwhile, I had gone to Sears and found a three-in-one machine that is an elliptical machine/stationary bike/recumbent bike. I found one on Amazon.com brand new for $70 cheaper and no delivery fee! This was before I knew I had the mutation. When I looked up the most desirable exercises for people with CMT on the NIH website, I found out that bicycling and swimming were two of the best exercises! So I made the right decision based on what I could do and how I felt. I hope they let me do the elliptical machine because I truly love those machines. They are completely stress free on the joints and get your whole body moving! I tried the one at Sears so I already knew that this model won't aggravate my herniated disc. Some models lean you forward and keep your feet flat at the same time. Those hurt! I need the tilt in the pedal.

    I have heard of FALS when I was doing my research. Ed, there is no genetic test for ALS. They haven't gotten that far in the research. Like you said, it is rare; 1 in like 300,000. So think of it this way, if ALS is rare, then FALS is even more rare! Since there is no genetic test there is no reason to get worked up. But I'm preaching to the choir. But, honestly, I can share how you feel. Remember, I thought my dad died of ALS, too. Everyone is doing the ice bucket challenge to raise awareness and money for research so hopefully there will be a genetic test soon. That's great! So IF they develop a test for ALS, it will be up to you to take the test. But knowledge is power. You will be able to plan for it if the test comes out and you have it. Getting your ducks in a row before you die and planning your own funeral (my grandma did this when she was diagnosed with terminal cancer) and paying for it ahead of time can save your family and friends a LOT of stress. They will be able to grieve without worrying what to do with your remains and arranging a funeral and often having to go into debt to bury or cremate you. I know what happened to my mom when my brother died. It was awful! When my grandmother died, the only thing we had to worry about was cleaning out her apartment and grieving because she had everything arranged down to the last little bitty detail.

    I know that I have the opportunity to do that for my family AND "if" my other family members have it, we can support and encourage each other to keep pressing forward. I don't know if you have family support and it's none of my business. But I hope you can see things more clearly through my eyes. You know that up until last week I was thinking FALS.

    So, even though I'm quite wordy, I hope I've given you something to think about.

    September is CMT awareness month. I think it's ironic that almost everyone has heard of ALS, a very rare degenerative disease, yet I have not met a single person, aside from Ph.D. geneticist friend, who's heard of CMT, the MOST COMMON of all neuromuscular degenerative diseases!

    I'm going to get one of their T-shirts. It has a picture of a Shark, then says "Oh" and "Marie" and a picture of a Tooth. It's an awesome T-shirt. My dad suffered needlessly both physically, due to lack of PT/OT/braces/and orthopedic surgery to free his joints. Had he been diagnosed, he would most likely be alive today. He's been gone 2 years and 5 months. I keep saying 3 years, but he died in March two years ago. I miss him terribly and feel like filing a malpractice suit against the quack that told him it was the results of smoking as a youth that cause the TIAs that caused his bilateral paralysis! I'm getting really angry so I need to sign off.

    Ed, I lost my dad, too. I know how painful it is as his child and the pain he suffered. He died like your dad did or similar, I'm sure. He had his mind until his last breath which was the only one he didn't have to fight for, for several years.

    Take care and thanks for sharing your feelings on the matter.
    ((((HUGS))))
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  10. #10
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    There's so much for you to digest at this moment but you're amazingly clear-headed about it all. I'm so glad to hear there are treatments that will improve your life.

    I don't blame you for your anger about your Dad's death. But at least you finally have a diagnosis and you and your kids, if they have it, will be able to get that treatment he was denied.

    Just as an aside - regarding ALS, my daughter has joined the ice bucket challenge - yes, it's widely promoted here too - her husband's father died of it only last year.
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  11. #11
    Join Date
    May 2009
    Posts
    3,745
    dear rohr
    as i wrote you before, i am glad you finally have a diagnosis,
    but so sorry for what it is...
    i know you as a strong woman....but i think it takes a while
    of being angry, upset, etc...at first...
    i never liked the word "processing" in social work...
    but i guess that is what i am trying to say...
    and those idiot doctors who like to throw the word
    "hypochondriac" around are really identifying themselves
    as doctors who cannot figure out what is wrong with a patient...
    so they blame the patient...
    really, if you think about it, it is a medical form of bullying!!
    and so cruel...to bully someone who comes to them for help...

    but i know it is a waste of time to be angry with them when
    the anger can take energy away from gathering one's strength
    to deal with the illness....

    the internet says the chance of inheriting it for kids is 50%...
    that means there is still a 50% chance of NOT inheriting it...

    sending you hugs and woofs from me and Spark

  12. #12
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,974
    Rohrer - I was both sorry and relieved to hear of your diagnosis. Now you know what you are dealing with, so at least it is not something in "netherland" anymore. My mother was diagnosed with CMT later in life, and at that time I was 1,000 miles from her and busy raising my children. Of course I was concerned and tried to read about it, but it was in the days before "google" and gosh, we were in the dark ages 25 years ago, weren't we, as far as getting much information! Her main problem was drop-foot. She did tell me she had testing done that showed she did not carry the gene to pass it on to her off-spring, so I think I (and my daughters) are in the clear, although I find it interesting that both my sister and I have hammertoes and extremely high arches which are an indicator that you might be a carrier. Maybe just a coincidence. There was a lady on a here a few years ago that had a daughter with CMT and wrote quite a few times. I think she left after having some difficulties with someone, but you might be able to do a search and find her or at least some of her posts. I know she said that CMT and scoli are often hand in hand (I think I remember that) for some reason.

    You have a lot to process, and the whole gamut of emotions to pore through. In my own mind, it would be sort of like going through the grief cycle, as you settle in to accepting this diagnosis. What a crummy thing! I am so sorry, as we have all grown to love you over the time we have known you and some really good things are that you are so knowledgeable, insightful, and an overcomer. You are a strong person and when dealt a bad hand, you will take it and find the good you can make of it. There have been so many people with really rotten situations who have not let their severe health problems keep them down. Here are a couple that come to mind, if you are interested. But I know the main person who needs encouragement right now is YOU -- and you are cared for by all of us, so please know that, and keep us up to date on what you find out and what we need to do to help you out.

    http://www.joniandfriends.org/jonis-corner/jonis-bio/

    https://www.youtube.com/watch?v=3_PIWSMSEsw
    (one of my daughters went to Taylor University with this fellow)

    Hugs and prayers, Susie
    66 and still heartbroken...
    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
    2014 DXd w/CMT (type 2)

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

  13. #13
    Join Date
    Mar 2010
    Posts
    2,755
    Thank you all for your very kind comments!
    Actually, I'm not digesting or processing or feeling like I have to come to terms with anything. After I started having some severe symptoms, I KNEW that if I didn't find out what it was, I was going to die like my father. I've already gone through that process. Getting a diagnosis makes me feel justified and RELIEVED that I'm not really as CRAZY as people think! I'm just a little crazy. LOL

    I'm angry because they gave up on my dad! I understand why my sister gave up. They couldn't diagnose my dad and they kept giving her false diagnoses that she had to "process" and "digest" every time. For her, she didn't have the same outlook as me. BUT, I told her I would press on for all of us!

    Susie Bee,
    I am really worried that you do have CMT. I would get checked with the DNA test. There is no form that can't be passed on. There is a recessive form where you can be a carrier, there is also an X-linked form. I think I have the autosomal dominant form, which is 50/50.

    My grandson has syndactyly and hammer toes and was developing a scoliosis at age 4, which hasn't been followed up on, yet. It wasn't a true scoliosis, yet. You could see where T9 looked like the apex of a convex right curve that was starting. The pediatrician agreed. Like I said also, my daughter has finally agreed to get tested and if positive get her son tested.

    As for the ice bucket challenge, I think it's a great idea! I think they ought to have something for CMT, too, since it is the most common neurodegenerative disease. So my kids challenged me to come up with something after I get my T-shirt and spread a challenge on FB. So if you have any ideas, throw them my way and I will do it on FB and see how many of you get it as it goes around. If you get to see it, you'll know who I am! My sister and my son both did the ice bucket. But I think the fact that everyone knows what the rarest neurodegenerative disease is and NOT the most common one is kind of sad and makes me feel sad. The only time I heard about it was when I took a graduate level human genetics class. I may be invited as a "guest speaker" for this class now. My friend, who is a genetics professor is seeing if there is a way to get me in. I will have had to have thought up my challenge by then. I may get them all T-shirts if they aren't too expensive.

    I'm pretty sure that my daughter, youngest son, and grandson are affected. The son that I believe to be affected is married to the wonderful woman who had surgery to correct her scoliosis. So "if" he tests positive, then they have to make informed decisions about starting a family. I told her at least it's not AIS on BOTH sides. I also said that if I had known and chosen not to have children, she would not have my son as her husband! So we have to be positive, get their testing done and get on with our "family" PT/OT/ and whatever else. I'm the worse off because it advanced really quickly on me before a diagnosis.

    I keep thinking in the back of my mind that I'm going to go to see this genetic counselor and he's going to say I don't have CMT. I don't know why. The letter read that he found my results for the CMT test and mutations were found and to make an appointment. I guess that's pretty straight forward. If I can misinterpret a letter like that, I'd have to be pretty stupid. THIS may be the DENIAL phase coming out...NOT. I just want to hear it from his mouth and get going on PT/OT!! I'm getting weaker in the legs as the days go by.

    I'll let you all know how it goes Tuesday. Don't forget to help me come up with some ideas. I know because I posted it here, someone else will probably beat me to it. But it won't matter because I'll still participate!



    Oh, funny thing is NONE of us have high arches. In fact we either have low arches or are flat-footed. That's one reason I didn't even consider CMT when I looked at the photos.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  14. #14
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,974
    Thanks for your concern. I have the genetic paperwork from my mom somewhere and should hunt it up. I mentioned it to my neurologist that I see for my migraines and he wasn't concerned at all after he checked my leg strength and other things. He just retired so I'll be seeing someone new and mention it again and take these old papers that show the mapping/information with me. As far as the arches go-- I was just reading something that said that a curious thing was that some CMT people do the opposite and are flat-footed, so there you go. My mother didn't develop hers until late 60s or early 70s, so maybe hers was an odd CMT, but it was definitely CMT. She also had Reynaud's syndrome, which I doubt is connected. And a lot of other problems. I have all the official paperwork from a UC (Univ. of CA) place (don't remember off the top of my head which one) and everything involved, as she wanted me to have it all for reference. We have two houses and it happens to be at the other one and I recently had cataract surgery August 27th -- and can't drive as my vision is horrendous ( -12.75 diopters - can't see the eye chart, let alone the BIG "E") in my regular eye and far vision is great in the one that had surgery, but together I am out of balance because it did not work to pop a lens out of my glasses. I was seeing double... Bleh. So depth perception is a bit off. I am having the other one done on Sept. 17 and then another 3-4 weeks before I can have the exam for glasses. This is another lesson in patience. In the meantime I have some cheap Wal-Mart reading glasses that are almost worthless. Things have to be exactly about 12" inches away to be in focus... Small potatoes, right? (smile) Again, thanks for being concerned. I will mention it to whatever new neurologist I pick out of the hat...

    And be sure to let us know how it goes tomorrow... thinking of you! And sure do understand your anger/upsetness with your father and sister. That is frustrating when it is out of your hands and you watch helplessly with your loved ones. My heart goes out to you. Just continue to be your own strong advocate, and for others in your family that may need your help. Take care!
    Last edited by Susie*Bee; 09-08-2014 at 04:00 PM.
    66 and still heartbroken...
    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
    2014 DXd w/CMT (type 2)

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

  15. #15
    Join Date
    Mar 2010
    Posts
    2,755
    Makes me wonder if your mom had the recessive type. That means that ALL of her children would be carriers and none would be affected unless your father also had the recessive type. The odds of that are phenomenally low.

    My daughter's feet are so flat that there isn't a part of her foot except maybe under her toes that doesn't touch the ground. My grandson is slightly flat-footed but not so much that he's out of "normal" range.

    I wish you well healing and a good outcome on your next eye surgery! My friend didn't even need glasses when she had hers done. :-)
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •