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Worried About Systems!


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Hello All,

Well I am begining to hide out alittle more as I am trying to work on SSDI, and POTS systems are getting much worse. I am begin to get scared at how things are going. I am still having racing of my heart, my doctor told me on friday is sounds like my hreat is trying to rap? ( ok I am not sure what that means but ok) I am starting to have my hands and legs shake or move for no reason. My headaches still have not gone away, I am getting more shortness of breath, and on the oxygen more. The other night I was walking and just started peeing as I was walking and never even knew it till I felt the warmth on my leg. I am more dizzy and b/p is running low and then for no reason will go high for no reason, also the pain in my legs, and arms, and even in the joints is becoming to much to take.

I am getting very worried as it ahs all come on strong over the last 2-3 weeks. My doctor is calling Cleveland on Monday, to talk to the doctor I saw there before, and see if there is anythin else to do. . I am popping pain pills like crasy and is not getting the pain to stop. I am really worried I am going to end up having PAF or somthing else. All the meds I was taking for POTS seem not to even be doing anything anymore. My doctor seem concrened, but doesn't now what to do, that why I am going to be waiting till he hears from them. So I am in a waiting game again.

On top of this all I am trying to fill out my apeal paper work for SSDI, but can no stay focused long enough to do it, so I thing I am just going to get a lawyer and have them do most of it, I just don't have the energy. Also an update on my mom, she is going to MAYO latter this month for a 2nd option on the cancer, and options. ( So please keep her in your prayers)

Thanks for listing!


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My goodness dear, I do hope things start getting better for you. And that the symptoms you are experiencing are just part of the potsy cycle, not anything more serious. I do hope that the doctors can find something that can elivate some of your pain and begin to make you feel better.

I am definately thinking about hiring a lawyer to do my ssd/ssi case. I haven't even begun it, but from your story and the difficulties that so many of you have encountered. I feel that it would just save me the stress and energy, which I have none of, just to have someone else trained to handle it. (although I really don't feel like paying for it, lol.)

You and your mom are in my thoughts and prayers!

Feel Better Soon.

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Hopefully your doctor will be able to help you feel a little better soon - it's so hard when they don't know what to do to help! Prayer seems to be the only thing that helps much of the time, so I will keep you and your mother in my prayers-



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Guest dionna

i have read that if someone keeps passing out then they might develop seizures and i know of people who have seizures a long time before they ever realize it. i would suggests seeing a neurologist. all the shaking and urinating on yourself. i get the shakes and twitching but the urinating thing is what scares me about you. i would definately see a doctor as soon as possible to possibly help you out. be careful and know that you aren't alone. take care.

dionna B)

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Well right now I am still waiting for my doctor to hear back from Cleveland. So right now there are just giving me pain meds, and I have also gotten a few pain shots to help with the musle pain. As for everythign else they want to talk to Cleveland and see where to go from here. So right now they are waiting to give me my next Procrit injection. Also my heart will not stay in a normal rythem, thankgoodness I a pacmaker but it only help when my heart rate drops done to 70, right now my heart rate is higher so I am getting alot of chest pain, just because of the tachy stuff going on. I still have not had the next abltion as the doctor (EP) doesn't want to do it yet now do to worried about problems. Want to get some of the potsy stuff uncontrol before, So I am stuck for now. As for seeing a nero, I am not sure yet, It might be a good idea if the doctor at Cleveland doesn't know what to do as the headaches are so bad now to.

No matter what I am sure it will work out. It just gets hard somtimes waiting.

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