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hopeforthecure

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About hopeforthecure

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  1. TCP, Thank you for the reply. Why did your neurologists not want to refer you for the SFN testing?
  2. I just have a question that has come up after some research. I was diagnosed with POTS for sure about 8 months ago, but more recently with Small Fiber Neuropathy by biopsy at Cleveland Clinic. They also did another TTT there to be sure I had POTS. That confirmed it as it showed an increase in heart rate by over 35. My BP was pretty consistent throughout the test. I just have a question, is this cardiac autonomic neuropathy or does that just happen with diabetics? Somehow this came up in some research, but this comes up mostly with diabetics. Just want to know what to think of this as it looks more dire than just POTS. My SFN/POTS is due to sarcoidosis which they are not treating at this point because it's not active and research shows that steroids/other treatments are not helpful for it. She also said that insurance may not cover IVIG, but we could try, but not sure we want to go down that avenue yet. Thanks!
  3. Thank you so much for everything Sylvie33!!!
  4. Thank you for the advice. If I were to use one of these treatments, do you know if it's something that you have to stay on forever or it will come back or do you just stay on it for a certain amount of time and you are done and the SFN/dysfunction is gone? Thanks!!!
  5. Hello, I have posted once here before I was officially diagnosed. I did a TTT last week and my heart rate went from 84 laying down to 144 standing up almost immediately. My blood pressure stayed consistent throughout the test. My heart rate did end up going down to about 120 after about 20 minutes into the test so I didn't stay at 140 so I did feel a little better after standing for a while. The dr had already had me on toprol 12.5mg twice a day for the tachycardia before this. The only reason he did the TTT was because I have sarcoidosis and my pulmonologist felt that this autoimmune disorder was causing my tachycardia. He felt that the POTS was being caused by SFN. So the TTT test proved that I had POTS. Just wondering how many of you have SFN and what you do for it. My pulmonologist for sarcoidosis (he is the leading one in the US so very good) does not want to treat the sarcoid and wants to stick with my treatment that the electrophysiologist has given for the POTS which is the toprol, extra salt, lots of fluids, compression stockings and get up slowly, drink before getting out of bed, etc. I do have tingling in my hands and feet. I am already on topamax as a preventative for migraines. I increased my dose of this and it has seemed to help the tingling so obviously the SFN is affecting my hands. Anyways, just wondering who here has SFN, do you treat it, what type of dr do you see for it? Do you think watching and waiting and just treating the POTS and SFN symptoms is all I need to do? I just want to make sure I'm not harming myself. I have 3 children that I need to be here for. I am able to function. I know that I am better off than many as I am able to work, and function and I'm so grateful for that. I just want to make sure that I don't just sit back and do nothing when this could become very serious. Thanks!!!
  6. I am currently now on a supplement. I think that is why she did the test today. If still low, then she will put me on one. Nobody else seemed to care about it when I brought it up.
  7. I also wanted to note that when my potassium was low, I was in the hospital for SVT, I hadn't ate a lot that day, if any and probably had drank a lot either. Not sure if that would affect that test. Secondly, they ran a BUN and creatnine test at the same time and both of these levels were fine. Is that a good sign that my kidney function is fine even though they didn't do the extra tests that they did today (above)? Thanks again!
  8. Well I went to the new cardiologist today (not the one I seen previously that just told me to ride a bike ). Anyways, she said nothing about Dysautonomia or anything to that matter. I told her about the Sarcoidosis diagnosis and she has scheduled me to have a Cardiac MR to make sure that there isn't any sarcoidosis in my heart, but she said my heart is doing the opposite of what a normal cardiac sarc heart would do so that sounds good, I guess (she said their hearts are normally slower). She has also scheduled me with an electrophysiologist for the SVT/high heart rate. My HR was 100 while sitting in there and BP was 118/78. The EKG today was fine. I told her about my low potassium in the hospital so she ordered these tests ... Potassium, Magnesium, BUN, Creatnine, EGFR, and Glomerular Filtration Rate. I was surprised that there were so many kidney function tests. Is this normal just because of some low potassium? Do I now need to worry about my potassium levels? It's so crazy how one doctor focused on the blood pooling in my legs and put in mychart dysautonomia but told me nothing about it and then another doctor is only focused on the SVT and Sarcoidosis. I don't know which way to turn, but I'm guessing that's how a lot of you started, as well. One last question, I have lost weight since all of this started. I don't know if it's nerves, or the sarcoid, or the POTS (if I have that), but I seem to have no appetite. Is that common? Thanks!!
  9. Thank you both for the reply. I just want answers. I am actually seeing a different cardiologist tomorrow. Hopefully she is more attentive to what is going on and tries to figure it out other than tell me to just get on a bike. I can deal with the BP, I think, I just can't imagine that it's normal or good to have a high HR. I feel so winded after walking upstairs.
  10. I have a question about those two things. I noticed the drop in blood pressure upon standing about 5 months ago. I also felt the irregular heartbeats and knew my resting heart rate was fairly high, but I never measured my heart rate from sitting to standing like I did my BP. Anyways, I have recently read this: It should be noted that many patients with orthostatic intolerance due to POTS will not demonstrate orthostatic hypotension (defined as fall of >20/10 mm Hg on standing). Instead, they may display no change, a small decline, or even a modest increase in blood pressure. (http://circ.ahajournals.org/content/117/21/2814.full) I know that I have an obvious drop in blood pressure when I stand as that has been documented by me and doctor, (not TTT), but I also get lightheaded when I stand up. However, when I stand up my heart rate also increases. When I was at the doctor sitting my HR was 80 something and then when I stood up it went to over 120. He did not measure my BP though. Do any of you have both? I'm wondering if I have something else going on? I thought they went hand in hand until I started reading a little more online. Thanks!
  11. THis is reassuring. You are right though. I have to take this one day at a time. I sent a message asking about the potassium levels and what I should do. I should hear back tomorrow. I started drinking 64 oz of water based on what the nurse told me after she told me the echo was normal. I ask her about salt intake and she said no because of my SVT. I may bring up that issue again with the doctor when I see him next. He also said nothing about the compression stockings. These are all great questions and I appreciate you bringing them up. They are all things that I will talk with the doctor about. Hopefully it will make things move along more quickly. Thanks again for everything!
  12. Thank you for the responses so far. It definitely sounds like I have some similiar symptoms of POTS and that the dr. is on the right track. I'm just curious if this is a death sentence. I have 3 small children and a husband and I NEED to be here for them. I can deal with a disability, but the thought of not being here 5-7 years later (which I read somewhere) is very scary. I thought my lymphoma diagnosis was scary, but this seems to be worse on some sights, but not so bad on others. I'm thinking I'm not near as bad as others though. I function. I work 2 jobs (1 is a desk job 40 hours a week, and 1 part time job 6 hours a week standing), I get my kids to their sporting events, I do the grocery shopping, clothes shopping for kids, etc. I just notice the shortness of breath and the high heart rate. Everything else is easy to deal with or I don't notice. I would like to think that I won't be one of the ones that don't survive after 5 years. Thoughts??? Just so scary when diagnosed with something that isn't known about.
  13. Hello, I am new here with what seems minor symptoms compared to some, but scared none the less. About 6 months or so ago I tried a running program with my daughter. After about 4 weeks I still couldn't run over 3 minutes without being horribly winded. I would sometimes feel that I was going to pass out. I talked to my doctor, went to a cardio, nobody seemed overly concerned. In September my heart went crazy and went to the ER. They diagnosed me with SVT and did a chest x-ray and chest CT w/ contrast. At that point they noted swollen nodes in the chest. This led to surgery of nodes thinking I had lymphoma. Surgery was a couple weeks ago, turns out it is Sarcoidosis. They sent me to cardiologist for the SVT episode. I told him that I get short of breath from going upstairs and can't handle exercise, that if I walk and talk at the same time I am very winded. I have normal blood pressure. At times I stand up and get dizzy. I have never fainted. He did an echocardiogram and that was normal. He told me to start an exercise program on a recumbent bike and see if that helps. If not to come back in a month and he will go on to the next plan. On my chart it is labeled as Dysautonomia. That is what led me here. He also noted my HR of 80 when I was sitting down in his office, he then had me stand and it jumped to 125. He then started talking about blood pooling in my legs, but never really gave me a diagnosis. I also just noticed on my chart that my potassium is 3.1 which is low. When I was in the hospital for SVT they also noted that my potassium was low and was going to give me pills but I was throwing up so they didn't at the time, just said to bring it up. Would this be related to Dysautonomia? Just wondering all of your thoughts? Am I on the right path to a diagnosis? Is this POTS? Something else? I know you are all not doctor's, but you live this. What type of doctor do I see for this? This doctor seems very non-chalant and I know he's not the one I will stay with. I am in Indiana and am willing to travel a little ways for a great doctor to make sure I do not get any worse. RIght now the worst thing seems to be my HR. Thanks in advance!!!!!
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