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Everything posted by jlmahon

  1. Rachel, I had testing for mito (muscle biopsy) done locally abut 10 years ago. I' m in the buffalo, NY area. They froze a sample of my muscle tissue after testing and I was able to have it tested at Cleveland clinic years later. My results were inconclusive here and in Cleveland. From what I understand, there is a blood test available now to test for many forms of mito. Does dr. Cohen prefer yvto go to Cleveland? Why are you considering mayo clinic? Are there any options for testing locally?
  2. Well, I've had my share of awful docs over the years. It makes you want to stop trying to get help. A few years ago I had a doc tell me I should ask my "genie in the Bottle" what is wrong with me. Really?!! I literally got up and walked out. I refused to pay my copayment. I was almost in tears then but now I laugh about it. You have to sort through the bad docs to get to the good ones. I try to find patient reviews for docs before I see one now. We don't have the time or energy to waste on bad docs.
  3. I'm 34 wks pregnant today. Both dr. Grubb and my local neuro, dr. Blitshteyn, told me some people get worse, some get better. For me, I think the extra blood volume the body normally makes in pregnancy has helped me. I've only had a few episodes of near fainting. I can't say I can relate to many of your symptoms. All i can say is I've been pleasantly surprised that many of my conditions (dysautonomia, small fiber neuropathy, rheum arthritis) have been very manageable with few meds, though my conditions are thought to be all autoimmune caused. My advice would be to consult with a high risk ob, as they are experts when it comes to meds in pregnancy. My ob would tell me a med wasn't safe, but the high risk ob would say ok with certain meds. A good friend of mine had to take hydro condone during most of her pregnancy and her baby is fine. Docs prefer people to avoid as many meds as possible during the 1st trimester when baby is forming. I feel for you and understand where you're coming from as far as wanting a baby. We went back and forth for at least 6 yrs with having our own/adopting. The adoption process was not great for us. Many agencies turned us down because of my health even though hubby is perfectly healthy, and the cost for many adoptions was outrageous to begin with. We were actually in the beginning stages of going through foster care training when I got pregnant. We have a few friends who have ended up adopting through foster care. Of course, there are pros and cons but it might be something to consider. Most counties have frequent overview sessions where they tell you about foster care and you are able to ask questions. I'm scared to death how I'm going to feel after having my baby. I am almost 40 which is hard for healthy people. While my hubby plans on taking off 3 wks from work, I'm a little nervous what I will do after that. I do have a mother nearby, and good friends that would help. I tell myself the worst thing that can happen is our little girl will go to daycare if necessary. Do you have family nearby that could help out? Would you consider daycare if necessary? I wish the best to you.
  4. I posted a while ago that I was being reviewed by Social Security for continuing benefits. I was concerned at first but then I read that it was common practice, and that 95% of people continue to receive benefits after a review. After all, I have been receiving SSD for 11 years now. Well, I filled out the ridiculously long form last April, and was called in to see one of their own docs (that's a real joke if anyone here has been through it). I thought the appt went ok though so I forgot about it. Yesterday, I received notice that my benefits are being terminated because I have "medically improved" according to their doctor. All the doctor asked was where my small fiber neuropathy was diagnosed, and asked me to tie a shoelace. They didn't even request medical records from any of my treating docs, including Dr. Grubb. Of course, I don't have the physical or mental energy to deal with this now, as I'm dealing with pregnancy complications on top of regular medical stuff. I feel like they're using my pregnancy against me. I'm trying not to stress because I know it's not good for baby but I feel like I'm having a 24-hr panic attack. I contacted a lawyer who is willing to help on a pay per service basis. I was lucky to find her, as most lawyers don't like to take on termination cases, because they are not guaranteed to be paid. She said because of the Soc Sec system financially going broke, they are trying to kick off as many people as they can, as she's had many more cases lately. She told me I should appeal and attend a hearing. I laugh, as I've been spending most of my time in bed and I can't imagine how much more difficult it will be in 5 weeks when baby is here. The good thing is my husband is taking off 3 weeks from work and mom will be around as needed to help with baby. I have no idea how I will feel, or how long it will take me to get back to "normal" again. I'm feeling so depressed when I should be happy.
  5. I've had 2 TTT - one abnormal, one normal. I've had 1 QSART that was abnormal. The QSART is what diagnosed my neuropathy.
  6. Thanks everyone! It seems like I'm going to have to decide what I think makes the most sense. My OB, high-risk OB, neurologist all have different opinions. Seems like if they give epidural dose more slowly and hydrate I should be fine. I just want to minimize risk of tachy and passing out.
  7. My doc is planning on inducing me a week or so before my due date. The reason is I'm on blood thinners and they need to control when I deliver if I want an epidural. I've heard horror stories regarding inductions. I'm thinking between needing to be induced and fluctuations with heart rate and blood pressure, maybe I should opt for a c-section? I know it's major surgery and all, but I'm thinking with less exhaustion from labor I might be better off. What are your experiences?
  8. I've been going to acupuncture 2x a month for the past 3 months and have found it to help with overall health in general. I started going for infertility, but found that it was also helping my fatigue and other symptoms in general. I also had some migraines flare up a few months ago that have seemed to go away. It's actually more relaxing to me than a massage. Most important - make sure you find a licensed acupuncturist. I decided to go to one who went through a traditional 4-yr chinese medicine program. She really seems to know her stuff. I say this because from what I understand, there are actually weekend programs available for certification. I know my PCP does acupuncture, but I would never go to him, as I don't think he is properly trained. My acupuncturist told me the needles should never cause any pain. To date, I've never had pain or bruising, and I'm on blood thinners which would make me more prone to bruising.
  9. I'm about 15 weeks pregnant, and had been feeling great until today. I woke to extreme fatigue, shortness of breath, and legs feeling like they're giving out. I was told by Dr. Grubb and local neuro that midodrine would be fine to take, but, I'm really not comfortable with it. I know many people have continued to take it during pregnancy but I'd really rather not. Before pregnancy, I would normally use caffeine (a few cups of coffee) to raise my BP before resorting to midodrine. Sometimes that did the trick. I still drink one cup of coffee in the morning. I'm told 300mg (about 2-3 cups of coffee) is fine during pregnancy. I guess I'm just wondering how many of you consumed caffeine for low BP during pregnancy.
  10. When I think about it, I know many people whose parent(s) live with them. I understand you'd like your independence, but it does beat living alone. If I wasn't married, I think I'd be begging my mother to move in. At least I know what it's like to live with her!!!
  11. I also have autoimmune dysautonomia. Mine tends to flare up for a month or two at a time, and then get better sometimes for a good few months or so. Even though mine is autoimmune, I've noticed I get symptoms (fast heart rate, low bp) from getting overheated. I try to spend very little time in the heat, and make sure I have lots of salty foods and fluids on hot days when I know I will be outside longer. Funny you mention, but I've often wondered if chiropractic treatments have helped me as well. My neck used to be so stiff and sore, and as soon as that got better, so did my symptoms. I also have RA, so not really sure. I took methotrexate and prednisone for the RA, and I think that might have helped with the dysautonomia too. I hope you feel better soon. Are you on any med treatments?
  12. I am soooooo overjoyed right now. My husband and have been wanting a baby for 4 years and I was worried I was running out of time. We were just getting ready to fill out adoption paperwork. I'm only 5 weeks, but so far so good. Interestingly, my heart rate and bp have been really stable. If anything, my bp has been on the higher side. Has anyone here felt better throughout pregnancy? For those of you who can exercise, did you continue to exercise through pregnancy?
  13. I have tested positive for the acetylcholine ganglionic antibody. Dr. Grubb told me it confirmed his suspicion that my dysautonomia has an autoimmune cause. When I was diagnosed with rheumatoid arthritis, I was put on methotrexate and felt better than I have felt in years as far as orthostatic symptoms/fatigue goes. I had to stop the methotrexate because I wanted to get pregnant. My symptoms got much worse. I'm currently taking a low dose of prednisone, and just started sulfasalazine, which is used as an immune suppressant. I'm hoping the sulfasalazine works magic too. I probably won't know for a while, as it takes time to build up in the body.
  14. I took domperidone for a few years for slow motility. I had to get it from Canada, as it's not FDA approved. My domperidone was prescribed by a GI doc at the Cleveland Clinic. I had to fax the script to the Canadian pharmacy. I'm sorry, I don't remember the name of the pharmacy as it's been quite a while. Domperidone did work for me. I was told by a naturopathic physician to try taking magnesium supplements, so I went off the domperidone. The magnesium seemed to help, so I discontinued the domperidone. I hope your son feels better.
  15. I've taken prednisone on and off for the past ten years. I've mainly taken it for joint inflammation (RA) but I also noticed it helped to keep my bp up. Since finding a new rheumatologist a few years ago, I've been given medrol shots in the office for flares. I've got to say I really prefer the shots, as don't seem to get the normal steroid side effects (weight gain, bloating, anxiety). The problem is, I can only get the shots 4x a year for some reason, and they only seem to help my bp for about 6 weeks. It really depends on the person. You could always try and see what happens. Good luck to you.
  16. I'm wondering the same thing at this very moment....maybe it's something in the air?! I hope we can figure this out. Feel better.
  17. I've been having a difficult few weeks, think it was due to progesterone in a BC pill. My autonomic symptoms seem to have gone haywire along with the rest of my body. I'm currently taking a taper dose of prednisone. It was prescribed because my ribs are inflamed, along with my fingers and toes (RA/inflammatory arthritis). Anyways, the last few nights, I noticed that I could feel my heart beating in my fingers. I thought that was strange, so I took my BP. It was 168/58 and pulse was 129. For some reason, this in only happening at night. I took midodrine earlier in the morning when I thought my BP was low. Now I'm wondering if that was a mistake. I would think after all these years I could tell when I have low BP. I know steroids raise BP, which is part of the reason I usually feel so good on them. I never get these symptoms from the injectable steroid (kenalog). Does anyone else with a normally low/falling BP notice an increase at night? I'm thinking maybe I'm just reacting to the steroids for some reason. On a good note, they seem to be helping the drunk/dizzy feeling and bad fatigue, and my joints are feeling better at least.
  18. I've been receiving Social Security Disability benefits for about 8 years. I just received notice that I'm under review, and have to complete a 10 page form. I worried because when I received disability, it was for lupus, panic disorder, and depressive disorder. While my symptoms are still the same, I'm worried because the names of my diagnoses are changed (now small fiber neuropathy, neurocardiogenic syncope, inflammatory arthritis, intestinal dysmotility). Another issue is my husband and I are attempting fertility treatments, and that is documented by most of my docs. I'm worried they will say if I can have a baby I can work. Has anyone here been under review? How did you handle the questions "describe your typical day," and detail the activities of daily living (walking, standing, bathing, chores, etc.)? I feel like some of these questions are traps, and I', supposed to have the forms back in a week. UGH!!!!
  19. I started walking and bicycling in a pool. I worked up to jogging. Water is also my favorite place. My only problem is that sometimes I overdo it and end up feeling worse when I get out of the water. Start slow and build up gradually. If only I'd listen to my own advice
  20. This happened to me about 5 years ago. I was diagnosed at Cleveland Clinic with a breath test. The gi doc prescribed antibiotics - I think I remember a sulfa drug was used, along with another antibiotic. I was better within a week or so, but stayed on the antibiotics for about 2 weeks. I haven't had an issue since then. I really swear by probiotics. I eat 8 ounces of yogurt per day, and that really seems to help. Hope you're feeling better soon.
  21. I forgot to mention that he was right on with my diagnosis at my first visit with him years ago. He told me then that he thought my autonomic dysfunction was due to autoimmune causes. Since then, I've been diagnosed with rheumatoid arthritis and autoimmune thyroid disease. He really looks at all symptoms and tries to figure out the cause.
  22. I just had an appointment with Dr Grubb yesterday. I've been going to see him I think for about 8 years now. While I usually only see him once per year, he helps me more than my other docs I see frequently. What's really unique about him is he actually cares about each of his patients. I never ever feel rushed. He answers all of my questions and even tells me I can call if I ever have questions. His staff is wonderful too. They're really friendly and helpful. I really don't know how he can be such a great doctor considering his wife is very ill. I always leave my appointment feeling optimistic that there are still meds I can try to help me feel better and enjoy more of life. He always gives me advice on ways I can help myself. I know people complain about the wait time, but that's only because he cares and doesn't rush anyone. I truly wish he could train other docs to be like him.
  23. I'm wondering if anyone has has undergone fertility treatments - IUI, IVF - and what your experience was as far as worsening symptoms. I'm also wondering if you continued meds such as florinef and midodrine during and after the process. I'm getting mixed messages from docs.
  24. [There are so many different types of Magnesium...what kind do you take? I take magnesium glycinate. From what the naturopath doc told me, anything that ends with "ate" is the best absorbable form
  25. I wouldn't go a day without my magnesium! Until a naturopathic doctor recommended I take it, my gastroparesis/small bowel dysmotility was pretty severe. My nutrition was suffering and I was losing a large amount of weight. The magnesium really helps my slow emptying digestive system and also helped tremendously with my migraines. If I skip a day, the nausea and bloating come back. I take 800 mg at bedtime. I would check with your doc first if thinking about taking a new supplement.
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