Gemma

What test did you have for MG, blood work?

This is not pulmonary test and not treadmill stress test. This is cardiopulmonary test where they put you on a bike, clip your nose, put on oxygen mask and you ride the stationary bike. It was so hard for me to do, but my cardio and pulmonary results are fine, but shows some muscle fatigue problem or something.

My psychiatrist wanted to give me Viibrid, but I went with zoloft. I am on 5 day of zoloft. Does anyone know when the weakness goes away? I feel like my feet and arms are heavy and weak.

My tryptase test shows normal also, but there is suspicion for MCAS. My doctor gave me a slip to drown blood when I am in a flare. He said if its after hours I should go to ER to do it. He even wrote what tube they need to use and that it is supposed to be frozen immediately. Also, he told me to take zyrtec 10 mg two times a day and zantac 150. He said for MCAS i need to take both because one is H1 blocker and the other one is H2 blocker.

Hi, did anyone ever have this test? My pulmonologist ordered it when I complained of shortness of breath while doing daily taks. He call me with results and said that cardio and pulmonary parts are all fine, but there is a problem with muscle weakness like deconditionin or he said maybe it could be myastenia gravis. So today i picked up my results and this is what it says: an exercise limitation is evidenced by a reduced peak VCO2. With normal cardiac and respiratory reserve suggest deconditioning or myopathy. Could this be due to POTS or could I really have myopathy. I dont know if I should investigate this further, ir this is just one of those things that comes with POTS.

Thanks Jan. Thats what I was thinking. I am not 100% recovered, but about 85% back to norm, so not sure if its worse it. Although, besides side effects, I feel like in these 3 days I am much more calmer, and clearer head today.

Thanks for reply targs. I dont know if I am willing to stick with it. Yestarday was a 3rd day that I took a pill. I dont really feel much spaced out today, but would be hard to have a normal conversation. I think this feeling will interfere with my school studying. Also, I dont know how it could be related but my chest pains returned. I suffered from chest pains for 6 months after stopping xanax. Last month I almost didnt have them at all and now for some reason since yestartday I started feeling really bad chest pains again. The pain is the same as I had before, and was examined by many doctors including cardiologist and I was told its muscoloscalatal pain, not cardiac. However, its really severe and kept me up all night. This is no good. I was so happy that after suffering from it for 6 months its finally subsiding and now its back. Maybe its just a coincidence, but it came back after I started the med.

Hi MontoJ, thanks for advice. I am also scared that it could worsen my POTS. Its been stable lately just occasional flares, but tolerable. The reason I am so afraid of any psychotropic meds is because use of xanax really messed me up, and I believe I got my POTS symptoms partly due to xanax use. Before I was put on xanax I didn't have POTS, just some anxiety and fatigue, but on xanax I developed really bad fluctuations in BP and HR and all other POTS symptoms. The withdrawals were really bad for me as well. So now I am so scared of any med to make it worse again and screw up with my body. You said you took SSRI for some time. After you stopped did you feel worse? And when you just started how long you felt the side effects if you remember? I saw my psychiatrist today and she said that I cant cut a pill, because if I cut it it gets absorbed in a different place where it needs to be absorbed. Ohh I dont know what to do. I should have tried them before, not one week before school. There is not much time for me to get adjusted to the med. also my psychiatrist said that to see how bad the side effects are I need to take it for a week at least. In two days I would not be able to know if I have side effects and how bad they are. So this means that only after a week I can start feeling some bad side effects. I am confused, I thought side effects are supposed to go away in a week or two.

Hmm, thats intersting. My side effects are not crazy bad, but stilk uncomfortable. I am still debating wether I should continue. My summer semester is only 6 weeks and it starts in a week, so by the time the medicine will work I will be finished with school, but in the mean time I will have to suffer of side effects while in school. I feel like I am a little more calm, like my body is not in the constant overide mode, but the things that happen with my brain are uncomfortable. I feel like my head is like a ballon, very heavy and it feels like its drifting towards one side and then the other. Also, the spacing out is not comfortable. A little more lightheaded since started it, more like offbalance. Also, because lightheadness is back the fear of fainting is back and I dont like it. My fear subsided by a lot lately and I was able to go shoping by myself and do different things without fear, now its kind of building on me again. Ahh, dont know what to do. I am thinking maybe I should stop now and start it later if I feel like I need it. At least I tried and know that the side effects are not as bad as I had with Lexapro.

Hi everyone. I just started Zoloft 2 days ago. My doctor insisted on taking it before I start school, which starts in a week. I am feeling better overall, but he wants me to take either zoloft or paxil for more like a preventative. He says that once I am under stress from school and I know there will be lots of stress, I am in graduate program full time, I might get my POTS symptoms back. I am currently taking no meds and was feeling only mild uncomfortable POTS symptoms, but was able to do basically everything, like shopping, cooking, and many other things. I do still get anxious and lightheaded when I go to restaurants and have to spend time talking to people. But other then that I am ok. There are some days when I feel bad but I think those have to do with hormonal fluctuations thruout the month. So, anyways. I started zoloft and feel some weird things going on in my brain. I only take take half of 25 mg. I took it yesterday at around 12 and felt very drowsy, lightheaded, and this feeling like I am drifting away and spaced out. Also, my head feels like a ballon. Another feeling is that after I take a pill my hands and feet become heavy and I feel weak. Today the same thing, but I took the pill at night because don't want to be drowsy thruout the day. Is this normal feeling in the begining? I am afraid so it wouldn't bring back my POTS symptoms. I am debating if I should continue or stop it now and if I see that school is making me very anxious and stuff, maybe start it then. Please help. Share your experience with SSRIs. Is it normal to have those feeling? How long they will last and is it possible that they will never go away? Sorry for the spelling mistakes. I just took another pill and feel to weak to proof read it for mistakes.

Hi blue, thanks for advice. I will try to write a new post if I can, feel the brain fog from zoloft now .

Hi everyone. So I tried half of 25mg of zoloft yestarday. I took it around 12 pm, and felt spaced out for the whole day. Also, felt those weird feeling like my brain turns off and on for a second and I drift away, very scary. I had those feelings when got off xanax. My doctor insists that I take zoloft because when my school starts the stress will come back and my POTS symptoms will come back. However, My POTS symptoms are much less now and I can live normal with whatever I have. I tried zoloft and besided being very sedated I dont feel very bad, but also afraid to continue. I remember some people on here wrote that their POTS symptoms got worse on SSRI, so I am afraid for mine not to return. Maybe I should just wait untill school starts and how I will be able to deal with stress and if it comes back start the med then. I think I am reacting bad to most psychotropic meds, i felt horible on xanax (worst time of my life), really bad side effects like adverse reaction from Lexaprom, very dizzy on Buspar. So, maybe for me all of these meds are no good.

Hi barb. Thanks for all the info, very helpfull. I read all the articles and now have some more questions to ask my doctors. I looked at my blood work reaults and it looks like I was tested for all the main things. I dont understand what heppened to my ANA. First result says 1:160 speckled, second says 1:320 homogenouse. The anti DNA is negative. Do you know if ANA first can show speckled and then homogenouse. Also, the blood work that I did like a month ago says ANA negative. Very confusing and interesting what is going on in my body. Maybe I should go visit rheumatologist.

Hi Barbara. Yes they test thyroid here as well. I also had lots of thyroid test done. I don't have it handy right now, but will write you later what tests I had done. Can you provide more info about what kind of test is a double stranded DNA test for Lupus. What is the name of it. I wonder if I had it done. About meds triggering high ANA, is also true. I asked my rheumatologist about it, and she said some meds can trigger it, but also said that xanax med that I was on does not trigger it. But then I med a nurse at my local lab where I do my blood work and she said she developed Lupus from long term use of Knolopin and her doctor said she needs to get off the med. She even started developing a butterfly rash on her face.

I felt the same. When I saw an abnormal result, I felt like finally I know what is going on with me. But then when I met with Rheumatologist, she said that she can not give me Lupus diagnosed because I do not meet certain criteria for Lupus. Even though I felt like I definetly have it. But then I started thinking about it and having Lupus is not a great thing to have either. My aunt has it and its not fun. By the way my aunt is diagnosed with Lupus, and when she is in flare her ANA is high, but then when she feels not so bad it goes down. She has it for like past 10 years and her ANA changes all the time, sometimes positive and sometimes negative. So, i dont know what the doctors base their decision on. But my aunt has very bad joint pains when she is in flare, even high doses of pain medicine does not help. Let me know what your test will show and what will be doctors suggestions. Did they test you for something else besides ANA, like RA, and other diseases. I was tested for a lot, but only my ANA shows positive. Good luck with your results.

Hi again, my ANA first one was boarderline like 1:160, second one was 1:320, but just recent one showed negative.

Hi barb10. I was on xanax for 7 months and had elevated ANA test 3 times. I just got retested few weeks ago after being off xanax for 7 months and it was negative. So who knows maybe meds are related to ANA showing positive.

Hi, I did see Dr. Blitshtein. Really knowledgable lady. However, she is like 6-7 hours away from me, so I only saw her once. Also, had one phone consult. My insurance will not pay for phone consult, so I could not afford it more then once. I think you only pay cash for phone consult.

Hi Corina. Thanks for the reply. Can I ask, did it give you anxiety, the ritalin. I was thinking if it is a stimulant can it give anxiety. And also, it says online that it is addictive can you share your experience. And another question, can it be taking as needed or has to be taken every day. I was on xanax for 7 months and felt horrible on it and when got off had really bad withdrawals for 3 months, so now I am afraid of meds that are addictive. Another thing that scared me was a black box label on it saying that it can cause sudden heart attack, that scares me a lot. But then I think how do they give it to kids with ADHD with that risk.

I also forgot to mention that they did mention that they had a pregnant women and an keen amputee go thru the clinical and even though they didn't have disability registered, they went to clinical and were somewhat accommodated. So I do not understand what is the problem with me. Especially it does say in the student handbook that all students have to be able to perform essential functions with or without reasonable accommodations during clinical. But they basically do not want to follow their own rules. I really doubt that they pregnant woman had to stand for 8 hours straight without giving her an opportunity to sit down when needed, or be absent when needs or had to walk away when felt nauseous. Please write anyone who had similar school experience. Thanks all.

Hi everyone. I really meed your advice especially those of you who went to college with POTS. I am planing on returning back to school this May and have some issue with school not wanting to accommodate me during clinical. I was at the meeting yesterday with my program director, 2 clinical advisors and 2 people from disability office. Thanks God the people from disability office were there. Basically my program director and clinical advisors know that i have POTS, big mistake on my part for telling them, but at the time when I told them I was not aware that we have the right not to disclose our disability to school, only to disability department. So the outcome is that they are fine accommodating me for the classroom part, but there is a problem for the clinical. I didn't ask much, only to be able to have some breaks when needed to sit down or lay down somewhere, also to be able to miss some days if needed when have a flare of symptoms. However, they keep on saying that they have no effect on clinical sites and it would be almost impossible to accommodate. Also, it looked like they wanted me to take another year off or even leave the program because of my condition. If disability personal would not be present I think they would do everything to push me into either leaving the program or taking another year off. When disability person asked why this things can not be accommodated, they say that not all Clinical Instructors will agree such a student, even though disability person said not to disclose to them my disability for privacy issues. Also, they kept on saying that during clinical students do not have even 5 minutes to sit down and sometimes go thru the day without even having lunch. I understand all that, but if I have this disability and ask for these small accommodations why cant it be accommodated. My symptoms are more stable then before. I explained it to them and said that my doctor wants me to return to school, but this is not enough for them. They say that for patients safety they afraid I might faint or something. I explained to them that I never fainted and it was never my symptom. And that my symptoms are going away and now I just still have this fatigue. But it looks like they don't even want to here any of my explanation but just concentrate on my diagnose. Now they coming up with some form that is made specially for me that my physician has to sing on that will included all the little details that I need to do at clinical and if I am able to do them. Without this form they don't want to let me return to school. They mentioned that there is another person on the program who has POTS, but she took 2 years off and now she is coming back but her doctor cleared her to go back to school and she is not registering her disability. I am so confused, I registered this condition with disability department in hope that maybe when needed I can get some accommodations, but it looks like I should have just not done it at all. Because now by registering it and disclosing it they discriminate against my disability and make it impossible for me to continue with school. Besides the hard school work I also have to deal with all that stuff for disability now. What is the point registering it. Also, the disability person said that if they make me fill out that special essential function form then they have to make everyone in the class fill it out because they cant just make me do it because of the disability. I don't know what to do. I am so frustrated now and just want to cry. Please give me any advise you can. Thank you.

Hi. I also read that licorice root works similar to flurinef and not to be taken together. Also, when I had sleeping problems when getting off xanax I used Passion Flower extract in drops. Also, helped me during withdrawals and calmed down my anxiety. Research it.

I just checked and one of the doctors prescribed Ritalin for me before, he said it will help me with fatigue. However, I never took it because was afraid of the black box warning for this drug. I still have a prescription.

Thanks for your advice. No, my doctor didnt advise adderall for it, just told me to go on paxil or zoloft. But i read that SSRIs can cause more memory problems and stuff.

Thanks all for replies. I am honestly also really scared to try it because afraid that it could elevate my symptoms. If i didnt need to go back to school now I would not take it. But i need something to help me concentrate and take away the brain fog.