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arizona girl

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Everything posted by arizona girl

  1. Becia, I am so sorry how difficult things have been for you. It is very concerning that you have a doctor that doesn't know your history trying to label you with a psychiatric diagnosis. We had this happen with another member, who the hospital tried to commit and said the same things to her that you are hearing. She ended up having Stiff person's syndrome and she was not one bit nuts. They had to move her to another hospital to get her away from those doctors. You may be able to ask that another hospitalist be assigned to you. These doctors are not necessarily the best. I had one touch the tape on my wounds after my surgery without washing her hands, after putting her cell phone down. Her doctor notes were wack when I read them. I had to call her on it. Then I heard the nurses talking about her in a negative way. They are often just new doctors in training. If you can't be moved to a different hospital, than either you or your POA need to contact the hospital and ask for a patient advocate. Every hospital has them. File a complaint with the hospital and ask for a patient advocate to be assigned to you. Your insurance may have one, though they can be biased as they are trying to save the insurance money. There are private patient advocates that can be hired. Also your pcp who knows your history needs to be bought in to advocate for you. What is happening here is wrong and a violation of your rights. I would not comply with a mental evaluation if I were you and I'd let your pcp know they are trying to force that on you. While the xanax may help you, they may try to use it as proof they are right, not understanding that these meds often help people with autonomic dysfunction. I take diazepam as a gi and muscle relaxer, but not to calm me down as I am pretty calm mostly. Your rights as a patient are being violated, let them know you know that. This is the last thing you need to deal with right now. Let us know what happens.
  2. Yes, that does sound a bit different, then what I described. Did your doc do a full cardiac work up on you? Sometimes second opinions are needed. If you think it might be medication related, did you try starting that med again to see if you improved? Many of us do what is called a poor man's tilt in our homes to determine if we are have changes in our bp/hr both supine and standing. This might help you tell if the brady is happening at other times. If you've already done that, then you probably do have a good idea of what is happening with you with posture change. Most of us with dysautonomia have symptoms when standing that go away when we are supine. Though I see why you might be focused on a vagal response, but again that is also a nerve problem more than a cardiovascular problem. It is fairly easy to rule out endocrine causes, have they looked at your cortisols and/or done an acth stim test? Are your tremors only happening when you're brady? Have you been worked up for the tremors yet? I know when my hr/bp drop during sleep my muscle contract and I get rigid and in pain. I'm thinking it is my bodies way to get the blood moving. Maybe tremors are a way to force the body moves the blood. The body can do some amazing things as compensatory responses. A neuro might be a better choice for determining what is causing those then a cardio. Cardiologist are very good at what they do but they tend to stay in their lane and not look broader, at least in my experience. Early on no one ever suggested I see a neuro, but when I finally got to the right one he was able to diagnosis me. We all know our own bodies the best, if you feel something is not right then trust your own gut. I'm not suggesting that an autoimmune cause is the only thing that can cause the symptoms that you are describing, there can be many types of causes. Figuring out what direction go when determining cause is probably the hardest part of the diagnostic process. It was for me. When you mention symptoms like tremors, digestion and low heart rate, to me, that points to something like nerve damage. The tremors could be associated with the large nerves, maybe the small ones, but HR and things like digestion are often associated with the small fiber nerves. If they are damaged then the question would be why. Diabetes is the most common disease that damages them, as are autoimmune disease, but medications and other types of injury can damage them to. It really takes looking closely at your own medical history and noting symptoms you may be having that seem unrelated. Hope I was able to help you troubleshoot what to look for. If you think it's your vagus nerve involved then maybe look for a physician that does research in that area.
  3. Hi Jerry, Welcome to the forum. First, yes many of us get the symptoms you are describing. POTS is just one form of Dysautonomia, there are several forms and many of us have a combination of forms. If you've had a chance to read through the information on DINET's home page, there is a lot that may help you see where you fit. In my case the some of the symptoms you are describing is called autonomic neuropathy, some of those symptoms can be triggered by standing, but some like GI distress can happen at any time. A lot of the research on autonomic neuropathy is pointing towards damage to the small fiber autonomic nerves, these nerves are also our pain and sensory nerves. They control everything that your body does without thinking. BP/HR, sweating, digestion, etc. Many disease states can damage the small fiber nerves, some are treatable once identified, some are not. It has become easier now to test for this type of nerve damage, as a skin biopsy can now count the nerve density and there is a scale for what is normal and what is not. It can be patchy and develop slowly, so a repeat may need to be done along with qsrt and thermo testing. Do you know what is happening with your blood pressure when supine and standing, or is only your HR going up when you stand. It is helpful to track when you are symptomatic and what position you are in. I also get very low and very high HR and BP. I turned out to have the SF autonomic neuropathy and eventually found out I had 3 autoimmune diseases and a primary immune deficiency. I have had improvements and have stopped some of the progression, by treating those conditions. With the tremors involved that adds another layer, if the muscles get involved those are large fiber nerves and that can point to other types of neurological causes and diseases. My primary treating physician is a neurologist who specializes in autoimmune neuromuscular disease. If you aren't seeing one it may be time to find one in your area. The members here can help you find someone in your area, but you may have to travel as there are not as many that are this specializes in the USA. There is also a physician list on DINET's homepage. Take care!
  4. Thanks for the articles and the update on tyler. I was wondering how you all were doing. Is he still getting pheresis too? He's not having heart failure is he? I'm glad there have at least been some improvements, even though small. Keep us in the loop and you all continue to be in my prayers.
  5. It depends on the diagnosis on whether IVIG can be approved by insurance. Pots is not yet approved, nor is small fiber neuropathy. CDIP a form of polyneuropathy is. There is an FDA approved listed of illnesses that are approved for ivig. It is being used off label in research trials for many illnesses. I don't know about lyme, but lyme has it's own combined antibiotic treatment plan to kill the bacteria. Lyme though can be suspected of causing symptoms of dysautonomia. I do get ivig, but it is approved for my immune deficiency CVID and my higher dose is treating my neuropathy off label. If you have her total quantitative immunoglobulins done and sub igg panel, she may qualify for ivig if those numbers are low. It wouldn't hurt to have them done.
  6. Hi, I've learned a bit about this as my cardiologist tested me for MTHFR along with inflammatory markers and a genetic lipids panel. The lab that did my test was Health Diagnostics. MTHFR and it's various versions are being studied in cardiovascular disease, autoimmune, autism and depressive disorders as well as the long studied ob/gyn birth defects like spina bifida. I turned out to have the homozygous the version with elevated homocysteine. This form is the least able to convert folic acid into the active form the body uses. Folic acid is the most common form of folate and is found in all our enriched foods and most b vitamin complex and is the inactive or synthetic form of folate. B vitamins are usually considered water soluble and pass through the body quickly, unless you have the mthfr defective version of the gene. Then your body can't get rid of it and it builds up. It also means you are not getting adequate amounts of folate(b9) the form the body uses, especially the brain. You can get it naturally if you eat enough foods that have it, like fruits and veggies. The only form of L-methylfolate sold over the counter, (the form used in most research studies), is the Solgar Brand of it and is just under 1 gram. There are at least two prescription forms, one is: Metanx it has L-methylfolate Calcium as Metafolin 3mg, Pyridoxal 5-phosphate 35mg, Methylcobalamin 2 mg, these are all active forms of b vitamins Deplin is the other one and is a very high dose version of L-Methylfolate without the other active b's L-methylfolate is the active form of folate and does not need to be converted by the defective/switched enzyme found in mthfr gene defects. The body can use it immediately. The high dose is used in depressive disorders, Metanx is used for neurological disorders and lower doses are used in pregnancy. I am taking the solgar methylfoltate, and methyl b12 and will be adding in the other active b5, b6. Since starting the supplements along with two autoimmune meds my inflammatory markers and lipid panel have corrected.
  7. Hi and welcome to the forum. It is probably not a good idea to post your personal email on the forums. These forums are currently private but they may go public again and you would not want your email open to the general public. Other members will respond to you in this topic that you've started, if you want to have a private conversation, please use the personal message, which will still keep your identity private. Many of us have the same kind of symptoms and have normal cardiovascular function. Small of us have something called small fiber autonomic neuropathy, which can be caused by autoimmune disease. You can search this forum for all kinds of information that you are interested in, without having to wait for a response from other members. If you would like answers faster. Good luck and feel free to ask for help when learning how to use the forum.
  8. Yes, I'm assuming you would pull your image up on your pc and copy the address link where it is stored in your computer. I think the same way you would share or attach an image to an email you are sending.
  9. Mike, Congrats on figuring it out, due to your own fortitude and not giving up. The diagnostic process is sometimes more painful and heartbreaking than the illness. Thank you for sharing your information with the forum, I remember seeing many on here who have had cervical instability over the years. I am happy you've found a doctor that actually knew what to look for and has treatment plans that will help you recover. Will keep you in my prayers that the healing will now come. To attach your image, when you are typing in your post window, look at the light blue shaded box above the text you are typing, on the second line there is one that looks like a "link" and on that looks like a "slide", one is for internet links the other is for images. If you hover your cursor over them you will see the description of the symbol. Click on the one you want to use and fill in the box that pops up. Good luck and take care.
  10. Hi, I'm so happy for you guys and relieved to hear he went through it pretty well. I never had any nausea at all. Are they replacing with albumin? Soskis tips are really good. I think back and realized they didn't do any of those extra's for me. I would get cold sometimes from what was coming back in and they used these warming blower/sheets. I had that one sudden drop/bounce in BP. I do remember within a few treatments seeing my hyperandrenergic bp/hr normalize. I was amazed at how quick that happened. I think I got it twice a week for several months. Then the anemia showed up with an infection. I'm guessing from the cath, but it could also have been my undiagnosed hypogamma. Pretty sure the anemia was do to the exchange, but there are those kind of blood issues with hypogamma too. I had iron infusions to fix it. Then once we found the hypogamma, my doc switched me to ivig. Which I fully admit took much longer to work and required a change from carimune to privigen. Carimune had to many side effects for me. I'd say about six months after starting the privigen I started to see improvements in the autonomic issues. It was a year before the bacterial infections lowered. I haven't had one of those in more than a year. Unfortunately, igg replacement of privigen doesn't cover all types of infections and I am currently fighting a pathogenic form of yeast called c. glabrata. I'm going to see an immunologist to assist with figuring out how to clear it. Keeps us up on how today goes. Really happy your doctor is pleased. I am too!
  11. Well I wish tyler luck with his procedure. Honestly that is the worst part of it. Plasmapheresis in the newer language for plasma exchange. They used use blood donors to replace the volume of proteins sifted out of the blood and now they use albumin to replace the blood instead of donor blood. It is safer that way. I had no problems with the treatments themselves. Just make sure they put all the cleaned blood back in and that they keep an eye out for infections and anemia and you should do well.
  12. A tumor certainly could be causing autonomic symptoms. That would be my priority if I were you. I'm not sure where you live but a neurologist that specializes in the brain would be the type of doctor I would seek out. Barrow neurological medical center in Arizona may be a center you'd like to consider. Can you get your films to another neuro that specializes in the brain and tumors? There have been a few members here who ended up seeing doctors at mayo who were very exercised focused, while exercise is good if you can do it, if there is something else causing your autonomic symptoms, then exercise isn't going to correct that. I also don't understand why a specialist would say you need to see a cardiologist, just because you were not simply pots. All neuro's and/or cardios should understand the concept that all forms of dysautonomia are orthostatic intolerance, pots is simple one of them. Have you had a complete cardio work up to make sure you don't have an underlying cardiovascular cause? BTW you can have more than one form of dysautonomia at the same time. I'm hyperandrenergic (high BP), with pots and eventual syncope/near syncope under certain situations. Again not sure where you are, but it is time to put your warrior hat on and go fight for yourself. There are times when one feels so deflated they just want to give up and doesn't know where to turn next. I've been there, so I know how it feels. BTW after giving up myself and getting back up after a very long time, I did find out what was wrong with me and we are now treating those causes (yes more than one) and while I'm not cured I am being managed and we know what to look for if I have a set back. Stay strong!
  13. Hi Lewis, We are of like minds. I am mthfr homozygous and can't convert the folic acid. I had been buying organic flour for years, before I found out. I'm so glad that I did as it helped cut down my exposure. As far as I know I don't have gluten or celicac, but I do have other autoimmunes. It is very hard for me to tell when I'm reacting to a food, as it's usually delayed. I avoid as much as I can eating flour products when eating out, but I do still eat them here and there. I have though had the same thoughts as you, that maybe all these gluten problems were actually a problem with processing the probably poor quality folic acid in everything that is enriched. I've even considered contacting the FDA about this. My cardiologist ordered the mthfr and inflammatory marker testing. There is a lot of different illness associated with this gene defect. It in combination some hematology labs can be really bad news. I'd get tested if my folic acid and/or homocysteine levels were elevated. The good news is avoidance and getting on active folate will help you process out the stuff that has built up in your body. I've also been taking the methylfolate and methyl b12 and will be adding the active b5 and b6. I'm also on other meds to treat my other issues. My inflammatory markers and some symptoms have improved. I do continue to fight fungal infections due to a defect in my immunoglobulins.
  14. Hi all! Thanks to one of our members here, EBO, I was able to track down Dr. Barboi's new location. As of today his part of the NorthShore Neurology Institute, near Chicago in Glenview, IL. Here is the link to his information: http://www.northshore.org/apps/findadoctor/physicians/alexandru-c.-barboi He specializes in neurology and autoimmune neuromuscular disease, that can be associated with dysautonomias.
  15. Sue, Looneymom explained this well. The only thing I can add is that b vitamins are not always water soluble. This defect causes the body to not process it or eliminate it. The fact that it builds up in the body creates an antigen, that can cause an autoimmune response. http://MTHFR.net is a good resource. There they state that the methylation cycle is very complex and there can be other dysfunction within it that may need to be addressed prior to correcting the folic acid dysfunction. They suggest starting all active supplement dosing at low levels and to consider starting the methyl form of b12 first and work up. My homocysteine was slightly elevated, I believe it takes a while for that to happen as a result of the elevated folic acid. I also was not a big enriched food eater, however whenever I tried to be healthy and start taking b vitamin complexes, they would always make me sick. Now that makes sense. I also craved eating fresh fruits and veggies, folic acid is in the natural form the body can absorb in these foods, so I was instinctively treating myself. I did not notice any problems yet with adding first methylb12 and then methylfolate. I am now on about 1,000 mg of both daily. I did start slow though. What I can tell you that along with adding those and naturthyroid, for the hashimoto and plaquinel for the autoimmunity ( i've also been on privigen ivig for 3 years), my recent lipid/inflammatory markers are almost back to normal. I still have to have a few more tests done and will do them after we make one more adjustment on my thyroid meds. I had never heard of mthfr, before my cardiologist ran this genetic panel on me, at the time I also had elevated crp and mpo which are inflammatory markers, and some other more in depth lipid particle sizes, my initial tests where very bad. The fact that I'm turned around now in those labs, shows we are doing something right. The fact that we know two cardiologists running this type of testing does give it merit, as something to consider. BTW high dose methylfolate has been being used in prescription form for a long time to treat bi-polar and depressive disorders. MTHFR is being studied as a cause of autism, cardiovascular disease and autoimmune diseases, in addition to already being used in the mental health field and in gyn for miscarriage and spinabifida and neural tube disorders. So sorry Dar, but that was a long explanation to answer could mthfr cause dysautonomia. It is possible if your dysautonomia is being caused by an autoimmune response, where your small fiber nerves are being attacked. That was true in my case, skin biopsy proved I had a reduction in my small fiber nerves. In your bio you have illnesses listed that could be being caused by an autoimmune response. What are they doing about that positive ana/histone?
  16. Hi dar, Elevated folate can be a sign that you may have the MTHFR gene deficiency. I have this my cardio tested me for it and I am homozygous, the most serious form of it. When one has this the enzyme that is suppose to convert folic acid (the form in all enriched foods and most vitamins) is switched to one that can not convert it. This then causes the folate to build up in the body and become toxic. It can also cause the inability to process some medications like methotrexate, as that drug follows the same methylation pathway. There has been some discussion of this on the forum, you can also google it. The lab that did my tests was "health diagnostics" Another sign this is off is if your homocysteine levels are elevated. It is fairly easy to overcome this, one by reducing the enriched food products you consume and by taking the active form of folate called methylfolate. There are prescription forms in higher dose and solgar has it in a lower dose.
  17. Hi, you said you were diagnosed with pots, but have you ever been diagnosed with any of the other dysautonomias? Syncope/fainting is another form, as is hypotension. You can have more than one at the same time. Often there is any underlying cause bringing on the dysautonomia symptoms. It is idiopathic if no cause can be found. Also look to your other autonomic functions, sweating, body temperature, digestion and elimination, moisture, are these functions normal? If they are not then it is important to look further. Sorry to hear your doctor gave you a hard time, many in this community have experienced the same thing. Many of us have moved on to find doctors that will listen to us. Don't take it personal and trust your own instincts when this happens. If your gut is telling you to move on, move on, it is usually right. Have they investigated anything else? Thyroid, autonomic small fiber neuropathy, EDS, autoimmune, mast cell, carcinoid, mitochondrial, immune deficiencies are just a few of many potential primary causes, seen here. I found ranitidine to be helpful to me, but I started at a much lower dose and don't use it frequently, often when I use it I pair it with benedryl at nite or sudafed during the day so I get H1 and h2 coverage. I don't know that I have mast cell issues though. However, this combo does seem to be helpful when I'm having what I call sore intestines and/or a chewing feeling in my stomach. Mast cell might be a consideration for you. There are a lot of posts on this topic, try using the search feature to pull those posts up. I think most of here have come to learn when it comes to meds, we start in baby doses and wean up, and wean down in baby does if we want to go off something. Stopping suddenly may have triggered your symptoms. You could talk to your pharmacist or contact the drug manufacturer and see what they might say. Fainting while eating lunch, is potentially dangerous and should be investigated further, that is what I would do if it was me. Really don't know what you've had investigated, so it's a bit harder to point in a direction that might be helpful.
  18. So Sorry Racer! Sometimes because the docs are so overloaded, they don't want to take on the paperwork that a disability case requires. That could be why they back peddled on you. In the USA, most successful disabilities claims require a lawyer to get you through the process and even then hardly anyone gets approved on the first go. You will though get retro payment from initiation of the process, once approved. If it was me I would start your SSDI claim as soon as possible, as you have to apply within a certain amount of time of the disability. In other words there is a stale date for applying. I did not know that and I missed my window to apply. My diagnostics would qualify now for ssdi, but as I missed my window, I would have to go back and earn another 40 credits before applying again. So obviously, if I could do that I wouldn't need ssdi to begin with. I am dependent on my husband, who I am so grateful to have, and who married me even though he knew I had health problems. I agree that's a good tip to call the manufacturer of your meds, and see if they can give you humanitarian assistance. Also if your insurance has run out and you are not able to work, in the USA you can qualify for access insurance from the gov/state. I had to apply for it in the beginning, in az it was called Patient's Choice at the time. It is not like ACA insurance where there is a window you have to apply in. State Access insurance can be applied for at any time. I know it's hard and the fight is tiring, but don't give up! You paid into you're SSDI and that is you're money not the governments, you earned it and it went into to the pool, to be used by people just like you. Please talk to an attorney that specializes in this before going back to work, as that could mess the process up. If you are sick you are not trying to take advantage of anything, you are just trying to survive. If you get better you can always get off SSDI and go back to work.
  19. Welcome RGNY! Tip I use a big gel ice pack, I keep in my freezer, when I get bad like that. I lay flat with feet up a bit. Though my face can be red for hours after a hot shower/tub or being int he heat. When I saw Dr. Grubb, because my bp/hr was having wide swings (hyper/hypo), he prescribed me labetalol short acting. It is an alpha beta blocker and I can adjust the dosing as needed. It really depends though on what your primary dysautonomia symptoms are, what helps best as far as meds go.
  20. Thanks Ebo, at least we will know where to look. Looks like he is not taking new patients at Rush, so probably just fitting in his current patients until he leaves. Do you know why he is moving on? Guess we will have to wait until July for the info. BTW welcome to the forum, I see your a newbie, with only a few posts. States, totally understand what you're saying. The initial salt/water loading didn't help me at all, and no one could initially tell me what was from what. That is still hard to figure out sometimes, even though I think we know cause now. I was similar I had several underlying causes that were hard to find because I had hypogamma on board and didn't know it. That made finding the antibodies for the autoimmune diseases harder, as they don't always show up with hypogamma. The autoimmunities were attacking my small fiber autonomic nerves and I was also have a hyper compensatory response. Several kinds of biopsy along with some blood work and my tilt table finally uncovered everything. With treating everything underlying, my progression for now has slowed way down and I've even had some improvements. I never feel great though and still have triggers like standing, heat and alcohol. I keep hoping to know what normal feels like. I will say though I got very lucky with my neurologist, who knows about SFN and who gets that small fiber damage can be caused by many things, and actually looked. I hope you're treatment plan for the other disorders gives you some relief.
  21. No, I haven't but there are several forum members who think he is great. How long ago did you see him? His bio at rush, said he is now doing skin biopsy for small fiber neuropathy and specializes in autoimmune neuromuscular diseases. A small but very specialized area of neurology. However, I don't know what treatment plans he offered to his patients. What type of testing did he do for you?
  22. Thought you all might find this informative. http://press.psprings.co.uk/Open/june/bmjopen004127.pdf
  23. Thanks you two! I'm looking for a couple of options to give my doctor. Anyone else have a satisfactory tilt table test?
  24. Hi all, if any of you hear where he is moving too, would you please post the information here. I was just getting ready to give his information to my cardiologist and now I can't. Rush won't release where he is going to, which is very common, but makes it hard to find out where they move to. Hopefully one of you is his patient and will be told where he is going.
  25. I'm sorry your daughter seems to be really suffering. Must be hard to watch as her parent. Sadly so many doctors do not understand the dysautonomias very well, and even if they do, don't necessarily know the best way to treat it. Since the headaches preceded the treatments, would she say they are the same kind off headaches as before she started the treatments or different? Some of the medications that treat dysautonomias can also cause or make headaches worse, depending on the patient. Headaches also don't alway happen with every patient with dysautonomia. It sounds like she had a lot of scans, but have they tested her for other potential causes of her symptoms? What exactly are her symptoms? Are they only orthostatic or do they also occur when she is supine. Specifically what happens to her blood pressure and heart rate when she goes from standing to supine and back? Does she have symptoms with other parts of her autonomic nervous system like digestion, sweating, body temperature, bp/hr? When you know she sick with a virus or bacterial infection does she run a fever? Does she get frequent infections? Is hypermobile? These are just a few of the common subsets of signs and symptoms that patients with dysautonomia can have, depending on how she presents will help point you towards a more appropriate specialist. Were you able to look a dinets' physician list to see if there was a doctor near you, that may be more helpful? If you mention the part of the country you are in, someone on the forum may know a better doctor to refer her to. As many on the forum will share less is more when it comes to medications, many of us need to take baby doses and can not tolerate larger doses of medications.
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