jodielynn

HI, Just wanted to let you know,I am thinking of your family. Hope K is doing ok.. Jodie

Has anyone been to the Lahey clinic in burlington ma? I have an appointment may 19 with a nuerologist dr matthew tilem. Any imput would be greatly appreciated. Thank you jodielynn

I just wanted to say,Happy mothers day, Being a mom is hard work for anyone,never mind for those who are battling an illness. I have two boys a 5yr old and a 2yr old,some days I feel like I can't go on,but my boys give me the reason too keep fighting this illness. You all should be so proud of yourselfs for all that you do! And for those who don't have children,remember are own moms who at times take care of ourselfs when,we are having one of those many bad days. Happy Mothers day,I hope today is one of those rare" good" days for all of us!! Take care jodielynn

Thank you everyone,I am going to look into MCAD. Thanks again jodie

Another question do any of you get hives? I have had a bunch of allergy testing and nothing game back bother some. However every once an awhile, like right now I get hives. I also posted yesterday about getting foggy eyes,I am wandering if maybe I am just going through one of "rough" spells. Thank you all jodie

Yes like saran wrap. Just scary no headache or anything just crazy vision. I guess its probably a new dysautonomia symptom. Thank you jodie

I was just wandering if any of you get a problem with your vision? The last couple of days my eyes seem foggy,and blurry. I never had any trouble with my eyesight before. thank you jodie

Thank you so much!!!

Hi BellaMia, no I am having the test at my cardiologist office in plymouth. Do you mind if I ask you who your cardiologist is? I live in south plymouth and mass general is only about an hour away? Is he or she knowledgeable on ncs and pots? thaank you jodie

Thank you all for your input I well hopefully get some answers from the stress test.

Do any of you get the feeling like your heart is going SUPER fast even when you are just sitting? I pass out regularly, about five times a week know. The drs told me to exercise,like most of use here on this site. I usually do pretty good on the treadmill at home,just walking. But recently I started passing out on thereadmil. I told my cardiologist and he scheduled me for a stress test on Thursday. I hope they schedule me for an ep study,too see what's going on with my heart. Thank you for listening jodie

Thank you everyone for your input. Its great to find this info out know before I make a decision to go down there. Going to have to seriously sit down with my dr down here and decide what is best. I am so thankful for this forum. Well keep you posted on what we decide to do.

Thank you so much for your kind words Lieze.

Hi everyone, I was just wondering if any of you have had any experiences with Dr Cheshire from the mayo clinic. I was thinking of seeing him. I live in Massachusetts, but willing to travel. I have seen dr grubb,he is great but it is so hard to follow up with him. I still haven't gotten anywhere in my treatment. I have had alot of test,told have autonomic dysfunction in 2002. I have two little boys and want to be a better mom to them. I am currently on procrit,but still passout almost daily. Any suggestions or input on the mayo clinic would be appreciated. Being on this forum makes me feel not so alone. Thank you all for your stories and knowledge. Thank you jodielynn

Any suggestions?