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  • Originally posted by loves to skate View Post
    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
    I hope so, too! I'm seeing my OB/GYN for the last time next week. She switched to fertility only. She's been my doctor for almost a decade and has been the BEST one I've ever had. It's all because I'm 45 and they can't really offer fertility treatments involving my own eggs at that age. Plus I'm not healthy enough anymore. The scary thing is this appointment will mean at least one last female surgery to remove a fibroid tumor that we've been leaving alone for fear it will weaken my uterus in case of a pregnancy. It started out pea sized and I think the last time we measured it, it was golf ball size. I want it out! She's the one to do it. She's removed three other tumors that weren't so deep, one under the endometrium. I'll have one last laser zapping of my endometriosis, too.

    This concerns me because of my blood count, although there is very minimal blood loss during her surgeries. Maybe SHE'LL get the the bottom of why I can't gain weight and am losing blood count. If I can't eat, I can't gain weight. I get SO hungry and then get sick. If I eat too much it triggers the tachycardia. So I have to munch all day. I get in about one good meal a day, sometimes two good meals and sadly sometimes no good meals. I keep high calorie snacks and I cook high calorie when I can cook. I use BUTTER and LARD, oh me oh my! My hubby is as skinny as a rail, too. But he's always been that way. He can eat 10 hamburgers in a sitting. His metabolism is very fast! So I've had to learn to cook high calorie. I do use healthy oils as well. Canola is my favorite, but I also use Olive oil. You just can't use Olive oil for anything. If you use it in the wrong dish it will taste funky. LOL

    Speaking of food. I think I'll grab a bite right now! I'm hungry!

    Take care all and thank you Sally!
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

    Comment


    • Another update on me for those of you following along.

      My last blood count wasn't 10.6, it was 10.9. So I feel I have to make that correction.
      My DNA testing was approved by my insurance. I will be tested for CMT (Charcot-Marie Tooth) and two types of Myotonic Muscular Dystrophy.
      I had my blood drawn on Monday. They said they needed at the minimum of 20cc's of blood. So the technician took an extra vial just in case.
      Some will be sent to a lab in Rochester, MN and some will be sent to Atlanta, GA. So, I guess this is some pretty specialized testing!
      I will update whatever I find out. I'm actually hoping that it will turn up something so I can finally put a name to my plagues.
      Regardless of whether or not it turns out to be one of these things, there are like thousands of dystrophy type illnesses that aren't all mapped out, yet.
      I'd rather know which one I'm dealing with. Of the bad things to have, these are the "better" ones to have if there is such a thing.

      I'm done with two full weeks of heart monitoring. I don't have the results of that. I'm assuming someone will call me since no follow-up appointment was scheduled.

      I wonder if I test positive for a type of MD if my scoliosis would still be classified as "idiopathic". I would think that it would no longer fit into that category because scoliosis is one symptom of MD. That would throw off the study that I participated in. But, since Axial Biotech doesn't exist anymore (so I've heard on here), who would I contact to remove my sample out of the batch? I guess it wouldn't matter. However, if they want to develop a truly accurate Scoliscore, you'd think they would want DNA like mine out of the mix if there is MD involvement.

      Just my thoughts. I hope everyone is having a good week!

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

      Comment


      • Hey Rohrer,

        It sounds like there is a good plan going forward to figure this out. Along with muscular dystrophic diseases, I read there were probably many, many connective tissue disorders and only a few are named.

        As to moving you out of the idiopathic category, I suspect they would not. I asked our surgeon if my girls were diagnosed with Marfans would that take them out of the category and he said no because they still don't know why scoliosis occurs with Marfans. That's my understanding of his response.

        And w.r.t. your participation in the Scoliscore proveout, that is just chance of progression which may be roughly similar for most types of idiopathic scoliosis due to biomechanics. Or not. It seems like more work is needed.

        Good luck with the testing. You have gone through so much.
        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."

        Comment


        • I hope you get a definitive diagnosis. Knowing what you have may not change your treatment options, but there's something satisfying about knowing what you're up against. I think it would be considered neuromuscular if you're diagnosed with any of the syndromes you mentioned.

          And, I wouldn't worry about ScoliScore. They are still in business, or they were a few weeks ago when I called to see if they were still accepting tests. They have so many subjects that I'm guessing that one subject being incorrectly enrolled would have no affect on the results.

          --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

          Comment


          • hey rohr
            i hope the doctors can figure things out and give you definitive
            answer....i agree with needing to know the why's of things...
            as Linda said..helps to know what you are up against...
            when i finally got a diagnosis of Lyme, after a year and a half
            of being called a hypochondriac, it not only put a name on
            all the symptoms, it also gave me satisfaction for the stupid
            doctors who told me they couldn't figure out what was wrong
            with me, THEREFORE i WASN'T SICK...hah...ignorant doctors
            with big egos!

            you have been thru an awful lot...i do not know what the doctors
            could offer you in terms of tx....but i hope you can get a name,
            a label, for what ails you....to at least get started on the right
            treatment approach.

            best wishes for getting some news that can help you.
            jess...and Sparky

            Comment


            • Thank you all for your responses. I agree that if my idiopathic label gets removed that it won't make much difference. There are probably a handful of test subjects that get subsequent diagnoses later on. That's to be expected in any large randomized study.

              As for the putting a name to what I have...THAT'S a big deal to me. They make me take these MMPI's that say I'm a hypochondriac because of the types of medical questions on the tests. It so happens that I do have problems with all of these organ systems, which was noted by the psychiatrist who was baffled that I actually had pathology! Duh! Yes, I want a name to it. It probably won't change anything. It's the knowing that matters. Although, my neurologist said that if I have MD, there are new treatments available. So that probably would change the course of my treatments from dealing with the symptoms to doing something to slow down the progression.

              Honestly, it scared the "you know what" out of me the other day when I lost a lot of muscle use in my legs from minimal overexertion. My arms I expected because the bulk of the work I was doing was actually moderately difficult and mostly upper body. Everyone thought I was in great pain because I couldn't pick my feet up and kind of had to use my hips to swing my legs in front of me in order to walk. It brought back instant memories of how my dad walked with his walker. I felt like I could have used a walker that evening. I was happy that I was in no pain, though. I just told my husband that this is what "we" have to look forward to. So if I get diagnosed with MMD, then maybe there will be some new medication that will slow the progression. Until then, I'm trying to keep my muscles as strong as I can. It's really sad to realize that I can actually feel the weakness setting in at this point. The biggest thing that scares me is drowning in my own fluids like my dad did. I watched him struggle to breathe for years. When he would cough, it took every ounce of strength he had. Every episode sounded like the end. His ribs were partially paralyzed and his abdomen was flaccid. It's already hard for me to breathe at times because of the pain of the scoliosis on my ribcage and on my back when I take a deep breath.

              So, thank you again. I hope to hear definitive news. But I'm not holding my breath on it. Uncertainty is the story of my life. I cherish each and every one of you. You guys are my biggest support and the only ones who truly understand how difficult this is. Yet we all keep persevering!

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

              Comment


              • Updating again.

                I have a new development that I don't know if it's related to my spine or muscle disease. Sometimes I can barely walk. It started with the episode while trimming my shrubs. Then the other day I got out of bed and had the same trouble. It lasted for about two days. Then I had a day where I could walk normally. Today, I got up and went to the Cardio Center to exercise and could walk normally all morning. When I got off the treadmill, I could no longer walk normally. This lasted the rest of thel morning. I came home and took a nap and when I got up I could walk normally but felt the weakness. It's really strange because sometimes my lower back hurts the night before, but not always. Usually when I'm unable to walk normally my lower back doesn't hurt hardly at all. It looks like I'm in tremendous pain, but I'm not. I feel like I need a walker when it's hard to walk like that. My PM&R doctor thought it was time for another lumbar MRI. I think I'll take him up on that. I'm also still waiting for my DNA tests to come back to find out if I have classic MMD. If it's negative, that doesn't rule out a degenerative neuromuscular disease. It may just mean that I don't have one that's been mapped in the genome. But, IF my MRI comes back with no nerve impingement, I can't think of any other cause of such leg weakness. Any ideas or advice?

                Some other non-related news:
                I had a biopsy on my lip yesterday. I can't believe how HORRIBLY this hurts! It doesn't make any sense. I have four stitches in my lip and it hurts clear into my jaw into my teeth and the right side of my tongue. It hurts all the way to my ear! It just makes no anatomical sense to me and I'm in excruciating pain from this. I hope it subsides soon.

                The biopsy was done because, like other sun worshippers (figuratively), I fried myself as a teenager and young adult while living in the hottest city in the nation. There were times it got over 130oF. To cool down, we would go swimming in the river or lakes and lay out and literally fry ourselves. I've had a lot of blistery sunburns and am very fair skinned. My bottom lip has been peeling for the last five years or so. I saw a dermatologist last year who tried a steroid ointment and said to have a biopsy if it wasn't better in three months. Well, things happen and time goes by. I finally had the biopsy and will know in about a week. The doctor said it didn't look like skin cancer to him, but I had a discolored area on my chappy lip that wasn't a scab. So that's what he took out. OUCH!!!

                I will also be having another "female" surgery next month. I have fibroids and endometriosis. The problem is pain management. I told my doctor that I "feel" like I'm at the limit of oxycodone and any more will make me sick. So we'll have to play it by ear. I have other issues, too, that will make this surgery difficult. Part of the surgery will be laparoscopic and the other part will be hysteroscopic. Laparoscopic surgeries are very hard on me because they cause upper back pain due to the excess CO2 that gets trapped under the diaphragm. I have some pretty horrible upper back pain as it is. So pain control is going to be a huge issue for a few days. I may just have to suffer it out.

                So I'm scheduled for June 13th. If you all don't hear from me for awhile, you know why. I'm not looking forward to this and am a little more unnerved than I have been in the past. There's a tumor in a bad spot that has me pretty upset. I'm NOT going to have a hysterectomy. I'll go through these surgeries every couple of years if I have to. My doctor and a few family members seem to be the only ones that understand why I don't want a hysterectomy. I'm glad the doc understands and isn't pushing me to have one!

                Anyway, thanks for "listening". LOL

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

                Comment


                • If this thread isn't helpful to anyone else, at least it's helpful to me. Here I sit having dialogue with myself. But it puts things into perspective for me and provides a timeline. It's open to the public so anyone can interject anything they'd like. That's why I'm doing it this way.

                  It's funny that the thread is labelled "I have some imaging CDs". I was so excited to be able to finally post my x-rays!!! I could follow things along from a progressive point of view. Yet, as everyone knows, scoliosis isn't my only problem and may in fact be a result of "whatever" is wrong with me. How ironic!

                  I've deteriorated to the point where my trouble walking, as I mentioned in the previous reply, is a daily occurrence. I walk clumsily all of the time now. I don't ever have "good" days where I can walk normally. For this reason, my doctor filled out the necessary paperwork for the DMV (department of motor vehicles) so that I can have a handicapped card to hang from my windshield. I have mixed feelings about it. BUT, when I see perfectly able bodied people using a spouses card so they can nab up the close parking while they run literally into the store while I'm at the end of the parking lot struggling to swing one foot in front of the other, I feel justified. It's fair from that perspective. My doctor gave me no resistance what-so-ever, which I'm thankful for. But, as I sit and feel a little sorry for myself because I'm "only" 45, I think of some of these poor kids that were born with birth defects greater than mine and have had to be wheeled around their whole lives. I feel pretty fortunate when I look at it from that perspective and wish I could take the hurt away from those kids. I at least led a pretty normal childhood.

                  But there are other things happening to me. As the cervical dystonia progresses, the Botox injections become increasingly painful and cause a tremendous amount of nerve pain in my arms and back. But after an hour or so after the injections I feel better. The doctor missed a crucial area last month. When that happens, I'm left with a fair amount of neck pain.

                  Another update is that Roche Laboratories quit making Klonopin for the USA. I don't know if they are distributing still in Germany or not. This created quite a dilemma for me since the generics don't consistently work for me. There is one laboratory that I requested and my pharmacy actually does most of their business with this laboratory. So I was hopeful that I wouldn't need much of an increase. Come to find out when I looked at the pills, I could tell right away that they were different from the last time I'd had them from this company. Sure enough they didn't work as well. Long story short, I ended up having to have my dose doubled and then I can still take more if I need it. At least it works. I have to chew the pills to get them to work for me. It could be worse, at least I have something that works.

                  I've had some other things develop that I don't know if I mentioned or not. I'm not able to walk on my heels or toes, not surprising. I also have some very minor facial paralysis on the right side of my face just below my lip. On the left side, if I poke my jaw muscle, it spasms and stays indented for a little bit. Nothing major there.

                  The newest development that is most upsetting is that I have difficulty voiding. I've sat on the toilet for up to four hours with a full bladder trying to pee! I've had to have a specialized MRI for that and am seeing a specialist who feels that it's part of the whole picture. They are trying me on a medication to see if that works. I also have to have some specialized testing done. It's my understanding that if the medication doesn't work OR the testing shows my muscles spasming (that's what happens and it can cause some excruciating pain!) this doctor will want to put an implant into my sacrum and connect them to specific sacral nerves. It acts as a pacemaker for the bladder by stimulating those nerves. I'd never heard of such a thing! But he said I was the "perfect" candidate for such a device. So I will let you all know how that goes if I end up needing it.

                  So my arms are really weak now, too. It's all I can do to open a can with my "easy" can opener that I bought a couple of years back. I'm also falling more. I took two pretty hard spills last week. One of them either knocked me out or I went unconscious before I fell. The other one was a balance thing. My balance is getting bad. Grrr.

                  So, when the snow flies in a couple of months, I will also be using a walker... at least outside. I feel pretty scared inside after those falls. I still hurt from them. I'm terrified that I will fall again. I can't blame the new medication, either. I fell the first time BEFORE I even saw my new doctor.

                  So that is my very wordy update...
                  If it doesn't help anyone here. It helps me to keep track of when things happen. Thanks for reading.
                  (((HUGS))) to everyone!
                  Be happy!
                  We don't know what tomorrow brings,
                  but we are alive today!

                  Comment


                  • Hey Rohrer,

                    I am so sorry to hear of the issues you wrote about. But it sounds like you are coping very well and that you are getting appropriate treatment.

                    Did your father have thee symptoms?

                    Even if people don't post, I will bet they are reading and hoping to have something helpful to say.

                    Hand in there.
                    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."

                    Comment


                    • I am reading, and so sorry you're having such a difficult time. Keep us up to date with your progress and I hope you have some good news soon.
                      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

                      Comment


                      • I am also reading and appreciate that you are keeping us updated. I am sorry for all that you are going through and want you to know that so many of us care very much about your problems and are thinking of you and/or praying for you and glad to count you as a scoli sister and one who has always been an encourager and a person of strength. It's a brilliant idea to keep your timeline on here so you can revisit your journey as needed. Always remember that we care. Hugs, Susie
                        71 and plugging along... but having some problems
                        2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
                        5/4/07 posterior 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
                        10/2018 x-rays - 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

                        Comment


                        • Thank you guys so much. I really means a lot to me!
                          I ended up having to have a CT scan from the second fall last Saturday night. My head just keeps hurting and the pain isn't getting any better, although the bruising pain is. The doctor said I definitely had a concussion. Things are still a little fuzzy. I misspell words or mix the letters around or can't think of what I want to say. He said go home and rest! So that's what I've been doing today, but not all week. So that's probably why the pain is staying. He was afraid of a brain bleed or a CSF leak, which were both ruled out, thankfully!!!

                          Well I do have a diagnosis. I'm going to make a separate post for it so more people will see it. My last DNA came back with mutations for Charcot Marie-Tooth. Honestly, I thought that would be the LAST thing it would be. But, that's what it turned out. It's mostly a peripheral nerve disease that affects mostly the outer limbs. This is what my dad died from. There are treatments but no cure and most people live a normal life span. But a "normal" life span means nothing to me if I consider that my dad died at age 79, a normal life span. He didn't have a normal quality of life. I go in Tuesday to find out more from the genetic counselor. I'm glad the hunt is finally over! I feel very grateful for my team of doctors that didn't give up on me even though on psychologist said I had "hypochondriasis". Now we all know what that means. They didn't listen to him. Neuro exams don't lie.

                          How this disease is kind of insidious and I've had symptoms since I was a baby, now that we know. The nerve endings die off. Well each muscle fiber has a nerve ending on it that signals and tells the muscle to contract or relax. When the nerve dies, there is no signal to the muscle and the muscle atrophies, leaving permanent and progressive weakness. Oddly, scoliosis is a symptom of this illness. So I don't know if I would be classified as idiopathic anymore now that we know that the scoliosis is secondary to CMT. It goes to show how integrated our bodies really are. Chronic fatigue and severe pain are also symptoms. In some cases the myelin sheath of the axon is affected or absent which makes, at least that form, a little similar to MS. So it's somewhere in a class of it's own. MS can go into remission. CMT does not. It is progressive. It is treated with a strict regiment of PT, OT, mechanical aids and sometimes surgeries. The odd thing is, running and walking are the worst exercises a person can do for this disease. They always say walk, walk, walk. Cycling and swimming are among the best exercises.

                          Anyway, I couldn't keep my mouth shut until Tuesday when I find out more!

                          (((HUGS))) to you all. I care about you all, too!
                          Be happy!
                          We don't know what tomorrow brings,
                          but we are alive today!

                          Comment


                          • So you have your diagnosis at last. It must, in some strange way, be gratifying. I don't know much about it, but you have your father's example. Has treatment advanced at all, since your father's death? I hope so, that you have a better future to look forward to than the one he had. Does your timeline with the disease coincide with your father's? For example, did certain symptoms appear at the same age as your Dad's? I guess there must also be degrees of severity with this disease?
                            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

                            Comment


                            • Jennifer,
                              My dad died undiagnosed and received NO treatment what-so-ever. His doctors were completely incompetent. I was baffled and studying genetics in college at the time. So I had my geneticist friend on hand to ask questions to about his symptoms. We both agreed that it sounded like some sort of muscular dystrophy. I couldn't help him. I lived so far away. They blamed his gradual weakness and paralysis on mini strokes. I'm sorry, but people fully recover from those. He NEVER had a full-blown stroke, ever. They didn't care because he was 70 by the time he was as bad as I am. I am 45 and my sister is 46. She has all the symptoms, too, so is going to have her DNA tested as well. I am the squeaking wheel in the family and I wasn't going to be quiet about it. Yes, I got tired of going through tests, some painful. But I was going to take it to the very end, which is a research study that is going on in the East Coast. They are studying rare genetic diseases and can test 20,000 genes or segments of DNA at a time. When I had my DNA testing done, they tested for THREE things, not 20,000.

                              And YES, I feel a sense of relief. It's a little dismaying, but I know what it is now. No one would fully know how to treat me not knowing what was wrong. So I am happy about it, as is my sister. Now our kids all need to get tested. It appears autosomal dominant from my father which means that each of my kids has a 50/50 chance of having it. Two of my children have/had scoliosis and the other is stiff. My grandson is developing a scoliosis that isn't a true scoliosis, yet. He is also stiff and had sleep apnea as a baby, same as me. So I'm a little worried about all of them. But I did my part and let them all know. My sister let her kids know, too, since she likely has it as well.

                              I can't answer if treatments have improved since my father passed away. He passed away three years ago. So I don't think they would have improved that much. But at least I will get treatment!

                              Thank you for caring and asking.
                              ((((HUGS))))
                              Be happy!
                              We don't know what tomorrow brings,
                              but we are alive today!

                              Comment


                              • Hi Rohrer...

                                Glad you have a definitive diagnosis, but sorry it's CMT. Your scoliosis would now be considered neuromuscular.

                                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

                                Comment

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