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schamsjj

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Everything posted by schamsjj

  1. When my symptoms first started in March 2010 I went to a Lyme specialist and my Western Blot from Igenix came back positive. I started treating for many months and taking some off. In August I was diagnosed with pots at Mayo. They don't believe it's lyme but i really have nothing to lose. I am still currently using antibiotics. In the begining he also found I had very high levels of mycoplasma results that my regular doctors overlooked. The Mycoplasma is lower now. Some things have improved and some have gotten worse. I still have all of my pots symptoms but less of a high heart rate. Jared
  2. Hi everyone, I was thinking of trying some allergy meds like allegra or clariten or anything else you all have tried. I have seen a lot of posts about ones that block h-1 and h-2 but i'm not sure which ones do that. I would like to try both at once. I have been taking benadryl at night to sleep sometimes just so you know. What would you suggest? Thank you, Jared
  3. I had it done in the morning, I was kind of hoping this test would find something. but at least I ruled another thing out.
  4. Whoops! The labs came back backwards and I posted them that way! Cortisol 12 baseline 21 30 min 26 60 min So hopefully this is normal since they doubled!
  5. Hi everyone, I just got the results of my ACTH stimulation test and was wondering your thoughts. Results cortisol 21 ug/dl baseline 26 ug/dl after 30 min 12 ug/dl after 60 min The nurse said it looked fine, but everything I read on this states that the cortisol level should double from baseline. Do any of you have any knowledge of this?? Thank you! Jared
  6. Thanks Rhino, Yea, I tried calling my federal loan place and the lady said there is no way unless you are never expected to get better period. I won't even waste my energy on it, it will take to much out of me. Thanks for the info, I might try to have it deffered for 3 years if interest won't accrue and see how that goes. Jared
  7. Wow I didn't know how many people have this too! This was one of my first symptoms and was freaking me out. My legs would be burning when I was walking around, and a few days later I started getting extra veins showing. I think these are vericose veins, and I think it happened because the blood needed somewhere else to go. The start of this summer hurts my veins a lot to. I wrap my feet and legs up with medical gause that has velcro on it. It's way easier to take on and put off than those stockings.
  8. Thanks everyone, Lizababy, I was looking into having my student loan discharged, but it says you have to be Totaly and Permanantly disabled with no expectations of getting better. I don't know if that would work out or if I should try. My doctor at Mayo would have to say sign it saying that I have no expectation of getting better. Has this worked for you or anyone else you know with pots? If there is a chance I will give it a try. Thank you! Jared
  9. Hi Dani At least you are young and hopefully will eventually get better. I got it approved 1 month after my exam on my first try. So I think they had made some sort of a decision before the exam, but just wanted to check my mental health. I'm not sure though. Did yours start abrubtly, like after an infection of some sort? Jared
  10. Hi dani, Thanks! I am 25 and have had it for over a year. That's good you don't have to have a mental exam lol! Hopefully your doc will be understanding, and just let him know all of your symptoms and how they can vary throughout the day. Just tell him what a whole day is like for you. I am honestly not sure at all what types of things he will test for but I hope for the best! Jared
  11. Thank you everyone for the advice. I just wanted you all to know that I was approved and I can't believe it. I thought the process was going to be so hard and long. I wasn't even thinking of the possibility of any chance of it happening. The paper came in the mail saying I was approved but did not list exactly WHY I recieved it. Such as which of my symptoms counted towards it. But i guess they must have seen all of the different doctors I have seen in the past year and tests. The psych evaluation was the only thing they had me go to last about month ago. It was very weird and she asked really strange questions. My cognitive ablities are very slow and she gave me memorization tests. She gave me a weird look when I couldn't remember the capital of Italy. I could not believe I couldn't think of this! All in all i'm glad now because I have lots of student loans and can now at least continue making payments. I also can just focus on things that will help me get better. Thank you everyone who contributed! Jared
  12. Hi everyone, I have had POTS for a year now and have applied for disability a while ago. Today I recieved a letter in the mail from the Social Security Disability center saying that I need further testing. They set me up with an appointment for a mental health exam on April 28th. Why would they need me to do this, I mean of course i'll say this is causing me anxiety. I don't want this test to determine my ability to obtain benefits. If any of you out there have ANY suggestions I would be very greatful! Thank you much, Jared
  13. I just got a heart rate monitor and I noticed how much my heart rate really changes. It varies from 50-140. When I stand it always goes from 60-100 or 120. Sometimes even if I move a little or take a big breath it will go from 60 to 100 right away. Lately it has been going staying around 80 or 90 when i'm sitting up. The other day I tried taking a bike ride and it was constantly staying between 135 and 150. I go really slow and it still doesn't go down. My doctor said to keep exercising, but that just seems to be making my heart symptoms much worse. I also have been having really bad head pressure with throbbing in my ears at times. My doctor doesn't seem to care and says he doesn't know what that is. But i've been dealing with this for a year and he just says it's probably anxiety and some residual effects from some infection I had last year. What do any of you make of this? Thank you guys! PS I also have this intense pins and needles sensation all over my body for like a half hour once every few months. Jared
  14. Hi All, Does anyone have noticed that their skin has more fine wrinkles since their illness started? For instance my skin under my nails is very wrinkly and sensitive, and my nails on my hands and feed are lumpy and have vertical ridges now. The skin on my feet is also very dry and thin, and I've really been noticing the pooling down their lately. It turns more purple and my heart just feels weaker, ya know? All of this with a lot of head pressure which i'm assuming is from very poor circulation. I'm getting so tired of my doc thinking its all anxiety now, I just want to go in and demand a lumbar puncture, and actually see an Endo for once! Jared
  15. Hello I am new to this forum and have recently posted that I do have pots. I am considering asking my doctor for an mri of my spine. Are there different kinds of MRI's I should ask for that could potentialy look at all the possible areas? I am going to ask him this because the first time I had a symptom was after I hurt my back. But then I didn't develop pots for like six months after that. When I hurt my back unloading trucks at work, about a week later I had an instant symptoms of numbness and incredible weakness throughout my body. Thank you! Jared
  16. You make me feel so much better! That is great to hear you are getting better already, right now for me it seems no end in sight with symptoms changing all the time. When I have friends over I get so fatigued just from socializing. I start getting shaky, dizzy, and weak! Yes, my first symptoms were eye twitching and then other muscles started twitching. When I got the flu it seemed to get worse from then on. It started with bloating and then the numbness and tingling. All of my other symptoms came after this. The doctor at Mayo suggested it may be post infectious which I think was either from the flu or my mycoplasma infection they checked for. Did you have and infection prior or know what may have caused yours? And how much better do you feel now? Did it get better gradually? Sorry I've got so many questions! Have a good day!
  17. TrainBoysMom, Thank you for your help and consideration! This IS soo tough. The Midodrine does help a little when my veins in my hands and feet get really really big. I do drink a lot of water and water with sea salt. I just hate the fact that with all of these symptoms that make me feel like I am dying, I seem crazy to my regular doctors. It just scares me to have ALL of these symptoms that I listed above and one of my doctors thinks most of it is in my head. If it was all in my head then I would be able to run out of the doctors office screaming happily that my body is OK after all and I wouldn't be going through this! How do I compare with other people with the symptoms i'm having?
  18. Hi everyone I am new and it?s good to finally post. I am a 25 year old male and before this happened I was super healthy. I lifted weights at least 3-4 days a week and loved being active. I?ve been reading this forum for months. I seem to be slowly getting worse with symptoms changing all the time. It started out in early 2009 with a few episodes of feeling short of breath and dizzy. Those lasted a few hours. Then in early 2010 I had the flu for a few days. A month after that I had that sudden weakness again and my stomach began to stay bloated. I started losing weight and my muscles constantly started to shake when they were in use. My first visit to the doctor my heart rate would go up to 120 just from talking, and then the testing began to rule out lots of things. The only test that was abnormal was the tilt table test. I went to Mayo in August 2010 and was diagnosed with POTS and recent mycoplasma infection. Symptoms: Weakness Fatigue Bloating Head pressure/Dizziness Chest pressure Vertical nail ridges Red crescents in throat Low BP (goes from 105/60 to 98/42 just from using 10 lb weight to curl in one arm) Muscle spasms Ear ringing (constantly) Shaky muscles all over body, even when I smile my cheeks twitch very badly Blood pooling ( veins in hands and feet get very large and hurt and extremities turn red) Eye Floaters Skin changes on hands and feet (thin, wrinkly, shiny) Varicose veins Horrible dandruff Palpitations Warm sensation coming through my ears at times I am just at a loss and I eat healthy, take vitamins, and take Midodrine to help with this illness. I just feel like I am slowly getting worse. I mean I just feel so weak. When this first started my heart would beat strong and fast. Now it literally feels so weak like it could stop, and doesn?t want to increase its rate when I try to do activities. Like when I just try to sit down and curl a 10 lb weight, my blood pressure drops to 100/42 and my heart rate stays between 55-60. This makes me feel horrible; it feels weak like it needs to be beating faster because I?m so dizzy. But sometimes when I?m standing it still manages to get to around 95, yet it feels weak. The other day in the Theatre I started sweating, I left the movie and started walking toward the concession stand and felt like I was dying and I fell on the ground. I was blacking out and about to faint and called 911 as there was no one there to help me. My blood pressure was 85/70 when they tried to stand me up. All they said was I was dehydrated because everything looked good once I got to hospital. I have a regular doctor here but he doesn?t know much about pots and just says ?take your midodrine that Mayo prescribed you and wait it out?. I want to continue to investigate because this just *****. I want him to try harder or maybe look at all of the other tests I could do to see what might be causing this. Sorry this is soo long, I really don?t feel good. What do any of you make of this? Do you have any suggestions? Anything at all would be appreciated! Thank you all!
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