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Everything posted by Victoria

  1. Thanks Julie. It means a lot to me. Knowing what I have is the best medicine ever. Oh, and I'm sure it isn't ever final. A roller coaster. . . . Hugs to you.
  2. Hi Naomi. Yes, my diagnoses are based on nerve conduction testing. I can't decide which is worse, the small or large fiber issues. One would be enough to deal with, but luck of the draw I guess. I think my SFN had progressed long enough that it showed up big and bad on nerve conduction. My neuro made it sound like SFN is usually hard to detect that way. I also think you can have normal QSART test results and still have SFN, so don't give up. Your burning feet seem significant. I started out with shooting pains in the tips of my toes and burning feet. If I were you I'd cut to the chase, save yourself a lot of agony and go for the biopsy if at all possible. Yes, my diagnosis explains my POTS symptoms. The cause of my dysautonomia IS small fiber neuropathy. My neuro said SFN frequently involves the autonomic nerves. She said she has no idea what caused my neuropathies and said we may never know. I'm okay with that for now. I was fearful NOT knowing what was happening to me all these years. I'm comforted having answers. Don't ever give up Naomi. You know your body and you know when something isn't right. I hope you get answers soon. Hugs.
  3. Thanks to both of you. You're all so sweet. I forgot to add Cymbalta. She also prescribed that for the neuropathies, but I can't afford it until after June 1st.
  4. My final diagnoses are large fiber neuropathy, small fiber neuropathy and autonomic neuropathy. My neurologist prescribed Mestinon, Neurontin and Alpha-Lipoic Acid. I'm not happy, but at least I can put my questions to bed for now. She didn't think I had CIDP, but she doesn't specialize in it and may have never seen a case before. I may see a CIDP neurologist some time in the future, but for now I just need to chill.
  5. And no body told you and put you on a treatment plan? My neuro at the time (2 hours away) thought I had Myasthenia Gravis and she prescribed Mestinon. Some time later I ended up being hospitalized in CCU at the UIHC with respiratory insufficiency and some muscle paralysis. They started me on prednisone and sent me home. I ended up back in CCU with the same problems and they prescribed prednisone. While I was there they ruled out MG with a repetitive nerve stimulation but didn't do any other electrodiagnostic studies. Heck, they didn't ever use a hammer on me to test my reflexes. If they had, they'd have discovered my deep tendon reflexes are nil. They discharged me to home after four days. Four days after I got home I received a psych appt. in the mail. My doctor here in arizona treats a lot of people with it. Some are on oral remittant meds with or without plasmapheresis or IVIG. I Googled your doctor's office, got their email addy and asked if they could refer me to someone competent in Iowa. I'm waiting to see if I hear back from them. See your not crazy, stressed by the situation yes, but not crazy. Does that internist know about this medical report? He has a bunch of my records in his possession, but I don't think he read them. I will make SURE I hand it to him at my next appt. I always knew I wasn't crazy. Mistreated, mishandled, harmed and stressed? Absolutely! I've met a few cipd patients, during my treatments, that is why I sort of recognized the symptoms you posted. I would still be lost if you hadn't posted that info to me. Thank you from the bottom of my heart! You have empowered me with knowledge and hope. Thank you thank you thank you!
  6. I found one of my electrodiagnostic tests from 2007 and the conclusion is I have an asymetric peripheral polyneuropathy. Features appear for a mixed neuropathy of both axonal and demyelinative type. On the nerve conduction test I have absent right and slow left sural sensory nerve conduction velocities, reduced peroneal CMAPs and reduced left peroneal distal motor conduction velocity. I'm going to try to find someone to help me. It seems I may have Chronic Inflammatory Demyelinating Polyneuropathy. In the meantime I'll continue taking the Alpha Lipoic Acid.
  7. "Well your sort of missing it. Large fiber nerves are mostly your motor nerves, allow you to move, etc. Small fiber nerves are the ones that control your autonomic function as well as the more commonly known nerves that cause painful neuropathies." Dang, I knew that. They're on separate circuits. I don't know what in the world I was thinking. Small fiber = autonomic nerves. DUH! Gee, can the brain be involved in CIPD? I definitely don't have MS. And yes, I have polyneuropathy. I've had everything from large muscle groups being paralyzed to having mild respiratory paralysis to just not being able to pick my feet up off the floor, to just having mild muscle weakness. Mayo told me I should be on mechanical ventilation in 2004. Two weeks later my respiratory function was fine. The severity waxes and wanes with really bad and terrorizing episodes and some not completely horrible times. You said autoimmune or genetics. My symptoms have been progressive through the years. Given enough time, I used to be able to snap out of it somewhat, but not anymore. It has been slowly progressive with big ugly painful and scary peaks but definitely progressive. You asked what tests I've had for SFN. I've not had a skin biopsy. I've only had the QSART test and it was abnormal (a very quick screen, it wasn't a full test). I already know I've had a huge amount of nerve loss. You know the lancets diabetics use to test their blood sugar? I can stick them up and down both arms and legs, in my lower back and my butt without any pain whatsoever. I can stick them in my flesh as deep as they'll go. I bleed, but I don't feel a thing. Maybe I should take my lancets with me to my next appointment and put on a show for my doctor? My 14-year-old can do the same same in some areas on his arms, and he has the same symptoms. One of my sisters has a severe chronic pain issue (not fibromyalgia or CFS) that no one can figure out. You said my internist is trying to pigeon hole me and you are correct. He is working against me and I HAVE to go somewhere else. I've exhausted the local physician pool. As soon as they hear I've been ill for this long with no diagnosis. Well, you already know the conclusion they all came to without even investigating. I'll do some more searching. I've phoned a lot of offices and no one does QSART, so I've X'd them off my list of possibilities. Using IVIG as a Google term is brilliant! "I'm lucky to have one here, but I went through some pretty rotten stuff to get to him and even though I'm in the right spot, I've still had set backs with treatment. He and I laughed about SFN being considered a rare condition. He said it is more common then people realize. I laughed and said yes, 'it's not rare, just rarely diagnosed.'" I'm sorry you also had to suffer to get where you are. Can I ask how long your diagnosis took? How are you doing with the IVIG? Is it even possible for me to make a comeback after almost 3 decades? Thank you so much for the concise information, and for sharing with me. You've given me some great ideas and I'm feeling a LOT more confident that I'll finally be able to put this baby to rest. Blessings, Victoria
  8. Awwww, thank you. They're relaxing for sure. Mine knows when my BP/HR are going haywire and when I'm not feeling well. In fact, he sometimes knows before I do when I'm going to have a big crash. I'm sure some will call me crazy!
  9. I won't have supplemental insurance again until June. But I should be able to self-refer wherever I want. BUT I was forced to go to the University of Iowa because I was once again deemed "too complex." I have no one in my corner right now. I've exhausted the private practice pool in my area. Rest assured, I will NOT go to psych or allow psych to treat me for a condition I do not have. I have all of my medical records — boxes and boxes of them, and when I forward them I do not forward physician comments. I only forward test results. I'm contemplating going to Wisconsin right now until I can get to Dr. Grubb's office. But then there's the financial end of it. Between my illness, my son's and my husbands we are financially drained. When my internist phoned to tell me of his plan to discontinue Hydrocodone I offered my pharmacy's phone number because I WANT him to talk to my pharmacy. I'm sure by now he's spoken with the pharmacists and discovered I've never, ever deviated from my prescribed dosage nor have I requested it earlier than prescribed. I'm quite certain he's looking for an addiction issue, but he won't find it because it doesn't exist. Yes, I have small and large fiber neuropathy. I have to wonder if the small fiber has gone undetected/untreated for so long that it affected the large motor nerves. Just contemplating, 28 years is a long time. I'm trying to exercise my moral and legal right to direct my own health care. I am in the midst of getting a patient advocate involved at the U and possibly an attorney (cringe). I've looked at CIDP and some of it does hit home, but I didn't read anything about having autonomic issues with CIDP. Did I miss something? Thank you for cheering me on, I really do appreciate it. You helped immensely.
  10. I'm big time confused Lyn, I'm having a brain foggy day. Is Froedtert Hospital part of the Medical College in Wisconsin? Is it at the same place? Like St. Mary's is part of Mayo Clinic in Rochester? P.S. I hope you have a good doc (well known in the Autonomic community) lined up at Mayo and you have a stellar experience there.
  11. I've searched but don't see a full autonomic lab at the UIHC where I'm currently going for health care, so this is great information to have. Thank you Lyn.
  12. Awwwww. They're usually calm and soothing little dogs. Male or female? What's his/her name? I do think mine is adorable. Even with the Christmas tree coming out of the top of his head! This is Carter:
  13. For now I'll take your beautiful bloom and hug my warm puppy. I have a little Papillion. I can't tell what kind of dog you have on your lap. Is it a Shih Tzu? If so, they're wonderful little creatures with good manners. It also helps to know I've finally found my home — this forum. Thankful, Victoria
  14. Crazy statement for an internist to make, isn't it? I know it isn't true. I have reason to believe they're trying to go the Munchausen's or somatization route. I do understand I have the right to have my pain reasonably controlled. If I can get him to believe I'm in pain. "Believe" is the operative word here. I'm afraid to ask for Paxil or any of the antidepressants that may help with pain (for obvious reasons). I'm going to a large teaching hospital (not by choice). Unfortunately, they've treated me poorly in the past. But maybe, just maybe I'll have a fighting chance if I can get to their pain clinic. I've started taking the Alpha-Lipoic Acid and plan to add some other antioxidants and B vitamins to try to tame this beast a bit. To back the boat up a bit, my records reflect the fact that I have neuropathy and major pain, but I haven't been successful at getting anyone to look at my records closely enough. Thanks so much for the encouragement. I really do appreciate it.
  15. Bless you for the info on Lipoic Acid. Do you spread your doses out through the day? Oh, and thank you for the hugs. I really needed them today. I do have a good brand of LA, I think. It's made by Frontier Herbs (Norway, IA) and I buy it at our Co-op. I wish I had a doctor to help with this, it would be so much easier. For now I have to wing it by treating myself and pray that Dr. Grubb/Beverly will be able to help me. I would dearly love to eliminate all of my prescription drugs, and I'll work on that. The one I'm most concerned about is Ambien. I take it every night or I wouldn't be able to sleep at all (pain and adrenaline). I feel super blessed if I can get 6 hours of sleep. Anyway, is Ambien a bad one for our nervous systems? I didn't have this degree of pain at the beginning of my illness. And I didn't have muscle weakness at all, so I have to speculate that my nerves have continued to deteriorate through the decades. I can't hold a pencil for very long, let alone my Grandchildren without pain, tremors, weakness, severe shaking and total exhaustion for a few days. Darn it! This is a very cruel illness. If I got diagnosed I could accept it and move past the grief of losing my former self. I'm very sorry for droning on like I just did. On the other hand, I know you understand the pain and my need to vent. I just thought of one last thing. Can you explain why I now have Axonal and Demyelinating neuropathy? Mayo also documented an "old" nerve root injury. Any idea what this means? And how would they know if it's old or new? I understand all of my existing medical records except for the important ones: my autonomic screen and my EMGs. Thank you so much for the help. I appreciate it more than you'll ever know.
  16. And I meant to add that the hydrocodone doesn't do a thing for my nerve pain, but it does help relieve some of the subsequent muscle pain from weak muscles.
  17. Hi Jana. I've been taking Hydrocodone since about 2004 for chronic pain of undetermined origin and I've never deviated from the prescribed dose. My doc called yesterday and told me they were discontinuing that Rx come August because they only give narcotic pain meds to people who are dying. I knew that wasn't true. Besides, my pharmacist is a good friend of mine and she verified it. I was dumped to the UIHC because my health complaints are too "complex." I've only seen the internist at the U once, but I can tell already tell where this is going. Psych. I don't mean to scream, but no one will look at my autonomic test results!!! It's right there in black and white. I'll back up and try to give them some credit by saying maybe they don't understand what the results mean.
  18. He's wrong. Medical practices send labs to Mayo Clinic on a daily basis: http://www.mayomedicallaboratories.com/test-catalog/Overview/83011
  19. I picked up some Alpha-Lipoic Acid yesterday. Can anyone recommend a healthy dose for SFN? My new internist is taking away my pain medication soon and I'm scared to death.
  20. So many things doctors don't understand and don't know how to treat them. Would like to find a local integrative MD, but it isn't in my budget.
  21. Typography, graphic design. My job wasn't horribly stressful. Symptoms hit me hard after strep and the stress of a drawn out and wicked divorce.
  22. I got dizzy in the sun/heat as a kid. It got worse when I started menstruating. I had episodes of insomnia and couldn't take cold medicines because it caused adrenaline rushes. I thought everyone felt this way.
  23. Your pain is similar to mine in the sense that any minor activity such as bending, lifting, squatting, walking stairs; heat and stress will also provoke it. It used to be confined to my feet, legs, hands and arms, but has spread throughout my body now. Through the years the burning has been replaced by shooting pain and deep aching or boring pain. Bev Ray, for many years I'd feel swollen in the ankles when they weren't, but I don't have fibromyalgia.
  24. I wish I could remember if I had it at night in the beginning. Mine is worst when I have shoes on or if I'm standing/walking.
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