all4family

Hi AJW,

I don't have the pain in your ear like you describe, but I definatly have some major ear problems. I have had an ongoing "ear infection" since early February, and think it may be due to allergies. I had one last year too. I also have the sleeping issues. I have spent entire days just sleeping, and waking for a very short time, only to go back to sleep again. Luckily it always passes. I hope yours passes soon too. I hope you can get in to see an alergist too. Wish I knew why, but at least know you are not alone.

Suzy

Hi Ricky, and Michelle,

I just wanted to say hi. Sorry I didn't say hi sooner, been having some problems of my own. Michelle, I can really relate to what you are saying with the chest pain after you eat, and not being able to breath. Although I am not on florinef, or midodrine so I don't know anything there, but I have had problems with many other medications. I am finding that either if I haven't ate, or if I have ate sometimes, that I am having a lot of chest pain, and difficulty breathing. If I haven't ate and I can eat it usually helps. If I have ate, then changing my position, and burping seems to help a little. I used to throw up all day, and the only way I was able to stop that was to eat my meals laying down. (I know everything against what conventional stuff will tell you.) I have had a special CT scan, and for the life of me can't remember the name of it, but it was to rule out sarcoidosis. Well they didn't find any sarcoidosis, but they did find that I have a dialated esophogus, which I understand is caused by GI dysmotility. Have you had any GI tests done? I am not certain, and I sure feel like it has more to do with my lungs, when I can't breath, but it may be related to the GI stuff. I also relate with the neck stiffness. I get all over chest to head stiffness. And many of my bones, especially my neck feel like cracking, and actually do. I do get relief most of the time when they crack, but sometimes have other problems that pop up. I really understand how you feel not wanting to shower because you don't want anything to get worse. I have avoided almost anything that made me feel worse in the name of feeling ok just for a bitl So sorry for what you are going through. I know it is so hard. I am real glad to hear that you have found a good doctor. I wish you all the best of luck with that. I hope things settle down for you real soon. Take care.

Healing Hugs

Suzy

Hi Janie, Thank you for sharing that. I get an icey feeling usually with it, but haven't noticed if it's only in certain spots. That is very reasuring, because it feels weird, and kind of scarey. I haven't noticed a color difference, but I usually am just coming out of a faint, or sleep, but I will start to pay attention. Sorry you have the pins and needles in your hands and feet all the time, I know it is a very annoying feeling. I do have a pinched nerve in my neck, but I have been told that wouldn't cause problems all over my body. Thanks for sharing, and the support.

Hi Jan, Thanks for telling me that. I did look up the videos, and there was a girl who looks like I feel sometimes. She just kind of loses her posture. But the one thing that doesn't seem to fit with me is they say it happens with extreme emotions. I certainly do have an increase in symptoms when I am emotional, but I can feel all kinds of emotions, and not faint. And vice versa, I can be feeling no certain emotion, and have it happen. So I am not real sure what to think of it, but I will definatly keep it in mind. I am sorry you don't have a definative diagnoses yet. Are you getting closer? Yes it is scarey..disturbing..and just plain anoying. I fainted in front of my neighbor, who is elderly, and all I could do was say I was sorry. I know it scared her. She said I hit the ground pretty hard. I think it scares me just a bit less then it used to. I think I am gettting used to it more, and before I always thought it was my heart, and I was dying. So at least I can reasure myself that I will be ok. But even so, it is still just a bit scarey at the moment it happens. Thanks for sharing, and the support.

Hi ana, thank you for sharing that. Glad to know I am not an odd duck.

Hi AJW, thank you for sharing that. I am glad to know I am not alone with the numbness. I used to think that maybe I was laying wrong too, but mine progressed to where it is all over my body, where I couldn't be laying on all of my body.

Thank you all for the replies,

Suzy

Hi everyone,

I had an a-ha! moment this morning. Since I became sick, when I sleep (in fact it was one of my first symptoms) I get this numbness, it varies from prickly pins and needle's, to dead heavy can't move at all, can't feel at all. Kinda like a mad dentist went nut's with the novocain! There is also the feeling like all my blood is at the bottom part (whichever way I am laying) of my body. Like if I am on my back it is all there. I get this on my whole body, but it varies how bad it is. It always includes my hands, arms, back, and chest. But it often includes my face, head, neck, stomach, pelvis, legs, ok...lets just say it involves my entire body, with the first part being the worst. So as I was laying there this morning waiting to get some feeling and be able to move it hit me....(blood pooling!) It feels like all my blood runs to the bottom most part of my body, and stays there. I also get the numbness when I faint, (which I seem to be on a happy streak of lately) and that is why I feel like I am still awake. Because I can't move, but I can hear. But my family has proven to me that I actually go out, and I wouldn't want them to go through laughing that hard at me again, so I won't go there ! So does anyone else get this? Or am I just an odd duck? Thanks a lot.

Suzy

Hi masumeh,

I felt so sad reading your post. It is hard enough being sick, but then to have to carry around with you how others are feeling about you being sick. In the beginning of my illness me and my family went through a lot. They as well as me were being told that it was in my head, but as time went on, and they could see that it wasn't. It took time for them to turn around, but they eventually could see that the doctors were wrong about me. It was very hurtful when my family didn't believe me. When I said that sentence exactly to a family member she got very angry, called me names, and said I wasn't grateful for anything. She said she was making the conversation all about her, then when she was done tearing me up she hung up on me. We are no longer talking.

It is sad that your father in-law has been through so much. BUT that doesn't make your pain or sickness any less. We shouldn't have to measure our pain to another. If you close your finger in a door does someone say to you "I can see that hurts, but you shouldn't cry, or get it checked to see if it's broke, because someone else got there finger cut off, and that is worse."? The hard part of what we have is there is no visible seeing it. So others have a hard time believing it can be bad. The saying you have to see to believe I think applies here. It is you have to believe to see.

I see you care about how your family is feeling, and that is very caring of you, but I hope you see how you feel matters too. I felt blamed too. In fact I was blamed for some time. It started with doctors, and they told my family, and myself. I blamed myself, my family blamed me, and my doctors started it all. There was plenty of blame to go around. I missed out on so much, and it was very hurtful. I stayed behind, and beat myself up. I hope you do not do this to yourself.

I wish you had a better experience with your wheelchair. I am happy that I have an electric one, as I can't imagine trying to push myself. I would make it about 5 feet! I have been using mine, and not apololgizing for it anymore, and I can honestly say that there are still those that have there opinions, but it isn't effecting me as much, and like the others have said on here, I LOVE MY CHAIR! The only drawback was I had so much fun, I got burnt in the sun, which made me feel just awful, but the joy of going out with my family was worth it! Take care, and be easy on yourself. You deserve to feel good too.

hugs

Suzy

Hi,

I get flushing too. I do get it after eating, especially if I have eaten sitting up. And like you said it is worse if I am already feeling bad. But I also have a positive test for the MCAD. Like Mack's mom said do a search on this. I hope this helps.

Suzy

Hi Sandi,

Welcome, though sorry for what your going through that brought you here. I certainly wouldn't consider myself a veteran seems how I just got diagnosed with this in late Jan. early Feb. But I can say I relate to how you are feeling. I also injured my neck just a few days before I became sick. although I think It had been coming on before. I read in my paperwork that what I have is autoimmune dysautonomia, because I have some antibodies. I have learned that it is common to get the dysautonomia secondary to autoimmune disease. Or maybe it is the other way around. Either way as you spend time on the board you will see a lot about autoimmune disease on here.

Your symptoms certainly ring a bell with me. I have the chest pain, and the coughing (this one drives me crazy), and many or the symptoms you describe. And mine come and go. Kind of like you say your average is bad enough, then you get to add this. Although when I first got sick 5 years ago I had daily fun! Mine was there 24/7 for the first 2 or 3 years. I am happy to say that's not the case anymore, but sometimes I get scared it will come back that way when I have a rough spot. I have learned that dysautonomia presents itself different for everyone. There is no set cookie cutter image for this. Although many similarity's each person experiences different symptoms at different times, and a lot change from day to day.

Beyond looking this up have you seen anyone about this? Or asked your current doctor about this? Although I didn't know what this was until I was diagnosed I know most doctors don't even know what it is. I am sure that there are many on here who had a harder time getting a diagnoses that can tell you which way to go. Although it took me 5 years to get diagnosed I didn't teach my doctor about it. (I didn't even know about it), I just found the right doctor who recognized what might be the problem, and did an appropriate blood test. I am sure there will be many on here to help you figure out which way to go next.

I really understand how you feel when you say people talk behind your back. I had them do it right to my face. After 5 years of beating myself up for not being able to overcome this, I still am learning to be easy on myself.

I know you will find lot's of support and caring on here, as I have.

take care, and see you around.

Suzy

Thank you Sunfish and Ernie,

That's a relief for me, and fits with the nature of the dysautonomia for me. I have the GI dysmotility, and I have recently found that my paperwork says autoimmune dysautonomia. I really appreciate the time for the response. And as a fellow rambler by nature I appreciate your educated rambling sunfish.

Thanks

Suzy

YES! I can't say that mine relates with the moving of my head specifically, but I do notice that when I feel this way I can't move my head from side to side very well, and tend to move my whole body to avoid the awful feeling. But I do notice these symptoms worse in a store where you do a lot of looking from side to side. The only thing that helps this for me is to lay very still, and not move almost at all. My vision becomes very dim, and I have had blackout vision too. Luckilly that has only completly happened once, but I still get black around the outside, with a small whole down the center. And I feel like I am on a boat and can't get off. People look distant, and far away, and I get very bad depth perception. I don't know what spacial disorentation is, so can't say there. I'm glad you posted this. Thank you. I tried for years to believe that it was anxiety, because I wanted to believe it would just go away. But I knew it wasn't.

Suzy

Hi Momofsix,

I am so sorry for all that you are going through. I know you will find a lot of support on this site. I don't understand the PAF, but see that there was quite a good explantion of it from sunfish.

I do however have a question for anyone who knows. The Pyridostigmine is the drug that my neurologist said he would try with me if the non pharmacutical things we are trying don't work. Is this a treatment for PAF only? Or is it used with people who have POTS also? I'd thank anyone who knows.

I hope you get all the answers you are looking for, and hope to see you around on the site. Take care.

Suzy

Hi Lizzegrl,

Congratulations on your victory! It is so important for us to be able to accept the help. It makes such a difference in our lives. Having energy to do other things is to important. I unfortunatly keep being reminded of how important it is because I keep going through real bad spells where the floor and bed is my life. I hope that will change soon.

I am so glad that my shopping excursion made you giggle. Laughter is so good to do. It's good that you left the full cart in line. I had to switch from my favorite store because I wasn't that smart, and fainted! And the worse part was I was on the scooter! That is a good idea to move your scripts to a small store. I am hoping everyone will forget me at the store I fainted at, because it is close to my house, and small. I want to go back, but feel so embarrassed.

I am glad to have found this site too. When I come on here and share stories, and others share too, I don't feel so alone. My family loves me, and they care, but the one thing they can't give, (and I am very happy they can't) is understanding of what this disease is like. They have understanding from seeing me, but it is not the same as others who have experienced what you are experiencing. It's validation! Take care, and I hope you keep using your parking pass.

Suzy

Hi Marcia,

Thank you for posting that. He has the same antibodies that I have. Maybe there is a relationship!

Suzy

Hi Abbriggs,

Thank you for that information. So what I am understanding from what you said is that your urine is low in copper because you are not able to get rid of it? I will go look and see if they did a blood test for my copper. I don't think they did. Thanks for bringing this subject up. And thank you for telling me about the urine thing.

Suzy

Hi Ernie,

Thought this might help. Maybe you can find something on there.

http://www.hrsdc.gc.ca/eng/isp/cpp/disaben.shtml

Your in Canada right?

Suzy

Hi Maxine,

I'm glad you got an answer, but so sorry that it wasn't more helpful. It's good though that you have time to think about it. It sounds like you have a very good doctor though. I know it isn't a decision I would want to make. Do lots of investigating so you will be comfortable with whatever decision you make. Take care, and I hope you get feeling better real soon.

Suzy

Hi Mandi,

Sorry to hear of all you've been through. I had pre-eclampsia with my first pregnancy, but I was able to carry to term after 3 months of bedrest. I also had a miscarriage with my second pregnancy. That must have been awful for what you went through. Your question about copper raised my intrest because I remembered my copper being one of the tests that were off, but didn't worry because the doctors didn't say anything. So I went and found my paperwork, and my copper was low, it was a 24 hour urine though not a blood test. So I don't know if it means a thing or not, but is interesting. I hope you are feeling much better now that your copper level is coming down.

Suzy

Hi Jennifer,

Thanks for answering. No since the botched EGD I haven't heard from the doctors, and I can't say I am beating down there door waiting to do it again! But I am waiting for my test results to come in the mail so I can find out which test led them to say I may have the mastocytosis.

thanks

Suzy

Thank you. Now thats a tiny victory! Yours is Big!

Suzy

Hi Jennifer,

Can I add a little more mud to the matter by asking you a question? My Creatinine was low. Very low. I know my BUN was off, and my hematocrit was off, but don't remember how. But my electrolytes are off. I think low. Do you know what this means? I mean clear as mud?!

Suzy

ok. Now a BIG YEEE HAWWWW for you!

Suzy!

am I supposed to delete those? If I do will it still change the size?

Thanks Jennifer,

testing testing 1 2 3 4 567ok.

Suzy

ok how do I get rid of the size things?

Big Hooray for you! It takes a lot of courage to try something new, and I am glad that it is working out! Although I hope you don't have MCAD. But if you do at least you are going the right way! There are no Tiny victories in this disease in my opinion. Any victory of any kind is big! So BIG YEEE HAWWWW! Wish I knew how to do the big letters! Haven't figured it out yet! Take care.

Suzy

Hi Ernie, I so relate. I hate depending on people, but find myself doing it more than I would like to. And I can look at the walker with the seat as a freedom, because so often I will start something that requires standing like dinner and not be able to finish, unless I clear the counter and lay on it while I cook! I have done that! So I can look at it as more independence, rather then as being dependant on it. Thanks for sharing.

Hi Casper, I am glad to hear that you have come to use your chair more now, and that you love it! I is encouraging to hear about the freedom that the wheelchair seems to bring everyone, and as you say makes your live more of a life. Thank you for sharing.

Hi Lizzegrl, using the electric cart at the grocery store was actually the first time I went shopping where it wasn't run in grab the stuff, go to the bathroom, sit in there for a while, then go to checkout, find shortest line, get confused paying for stuff, make up strange excuses for my confusion, go to car, lay down for at least 30 minutes, Drive my 3 minute drive home, have someone else get groceries, go lay down the rest of the day proud at what I had done! The first time I ever used one was before I knew what was wrong with me. I had fallen(because of my imbalance) and twisted my ankle, and couldn't stand on it. So we got a cart, and I was with my whole family, and my husband was asking me what I was doing because I was having such a good time, and picking stuff out. We ended up with 150.00 in groceries, and he said we better not let you go on one of those again, I'll go broke! But it was a lot of fun, and I just chalked it up to having a good day. It was funny but I had a lot of good days when my ankle was twisted. Now I know why. I am glad you have a therapist trying to help you with acceptance. I know exactly what you are saying about not wanting to accept the limitation. I think that is a lot of how I feel. If I accept this does that mean it is not going away? I hope that one day we will all have acceptance. Of course I hope even more one day we will all be better! I guess that is all we can do for now!!! Thank you for sharing that, I am glad I am not alone.

Suzy

Hi,

Glad it went well. And glad you felt better too. I hope you can get that back with the fluids. Take care.

Suzy

Hi Chrissy,

I wish I had an answer, but I can say I relate. Sometimes my mouth is very dry, and no water makes any difference. And it seems like I am peeing out more than I am taking in. Are you taking in salt too? I know my electrolytes are always off when I have blood work done, and it doesn't seem to matter what I have taken in. I was also fasting when I first became sick. Haven't done it again since. I hope you find an answer.

Suzy