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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
  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 dis
  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 sit
  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.ah
  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 abou
  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, a
  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 h
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