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krystal

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Everything posted by krystal

  1. I already tried that and couldn't find any matches
  2. How is this IVIG supposed to help with the low blood pressure? I googled IVIG and wikipedia says it's some sort of blood transfusion used for Immune deficiencies such as X-linked agammaglobulinemia, hypogammaglobulinemia (primary immune deficiencies), and acquired compromised immunity conditions (secondary immune deficiencies) featuring low antibody levels.Autoimmune diseases, e.g. immune thrombocytopenia, and inflammatory diseases, e.g. Kawasaki disease.Acute infections.IVIG is given as a plasma protein replacement therapy (IgG) for immune deficient patients who have decreased or abolished antibody production capabilities. In these immune deficient patients, IVIG is administered to maintain adequate antibody levels to prevent infections and confers a passive immunity. Treatment is given every 3–4 weeks. In the case of patients with autoimmune disease, IVIG is administered at a high dose (generally 1-2 grams IVIG per kg body weight) to attempt to decrease the severity of the autoimmune diseases such as dermatomyositis. Currently, IVIg is being increasingly used off-label in a number of pathological conditions; the increasing world-wide usage of IVIg may lead to shortages of this beneficial drug. IVIG is useful in some acute infection cases such as pediatric HIV infection as well as autoimmune, such as Guillain–Barré syndrome.[1] I didn't read anything about it for pots :/ Sorry this is way over my head.
  3. Thank you. I tried to search for CCSVI here on the forum, but I got nothing. Can someone show me how to find those other posts please? I am interested in this treatment and I want to talk to my doctor about it.
  4. Anyone heard about transvascular modulation? This doctor in SoCal is saying that this procedure should help pots if done early on. " Patients who undergo TVAM for POTS/neurocardiogenic syncope should expect to see a reduction in dizziness, lightheadedness, and blackouts when getting up from a seated position or out of bed. Increased energy is an especially important benefit for our patients, as fatigue is one of the most debilitating components of this condition. Relief from the common symptoms of Dysautonomia (mentioned above) should also be expected. While it is yet unclear if POTS/neurocardiogenic syncope is progressive, autonomic dysfunction appears to be progressive. When the ANS can no longer keep the body regulated and in optimal condition, over time damage to various organ systems is inevitable. For this reason, we believe that early intervention is advantageous." I found an older thread about it here on the forum but I'm not sure what to think about it. The thread is called Mom's fight for diagnosis and treatment changes daughter's life. What do you think?
  5. thank you! My doctor said he can refer me for a tilt table if I want to but I don't really need one :/
  6. You described my episodes so well. Feels nice not to be alone I guess :/ I get this if I stand too fast so I have to sit or lay down. I think it's strange but I don't know why it happens. I hate feeling shaky but ativan helps me calm down.
  7. I am always weak and tired even when I get up in the morning. I have a friend who thinks she has chronic fatigue. She is doing some changes in diet and taking B vitamins and she has seen some improvements. She told me that I should look into that based on what I'm dealing with. What kind of a doctor can help with this? I heard that some doctors don't even believe that chronic fatigue exists :/ Can someone explain what ME is please?
  8. thank you for your warm welcome. My PCP is very good and he thinks he can help me but wants me to have some tests done, which is understandable. I'm already overwhelmed by the amount of info here but once I figure out how to navigate the forum and all I will ask more.. You all seem very knowledgeable about this disease. I am still learning.
  9. hi everyone, my name is Krys and I was told I have orthostatic tension and postural tachycardia by my PCP. He checked my blood pressure lying down and standing and also checked my heart rate and he said it's bad and I have to see a cardiologist. The cardiologist said it is all in my head, everybody has this and I should go home and drink more water and exercise. I started drinking more and I also try to exercise but I feel awful after a few minutes. My problems started after I had an emergency appendectomy last year around this time. When I came around after the surgery I just knew somthing was wrong but I didn't know what. I would feel weak and faint when trying to lift my head off the pillow, my eyes would get all blurry and stuff and I could feel my heartbeats in my fingertips. My biggest prorblem are palpitations and dizziness. I take ativan and my PCP wants me on lopresor as well. I have many questions, I don't even know where to start since I am kinda overwhelmed atm, so please forgive my newbie mistakes Have a nice day everyone
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