Steph06

I saw Dr. Grubb back in January and he told me that his wife's tumor came back and that he was going to take her to see a doctor in Maryland to see if surgery could be an option. If anyone has a more recent update please let us know. I think about her often and keep the Grubb family in my prayers.

I am so sorry to hear about your son. I will keep you and your son in my prayers. Please believe God is by your side and will give you and your son the strength to get through this difficult time. Steph06

Let me know how your appointment goes. I wish you luck! Take Care

Hi Blondie, Dr. Goodkin is my doctor as well. Did he refer you to Dr. Bellew in Delaware? If so, you have nothing to worry about, he is a great doctor. I went to him several times but have not seen him recently. I'm not sure if it helps or not because I did not go consistently. I just told my husband that I was thinking about going back to Dr. Bellew. The atmosphere is very relaxing. Good luck and please let me know how you make out. Steph06

Cold is better for me than hot. I am actually not scared to go outside with my son and have to worry about getting sick. But today I was really cold and my fingers started to go numb and felt like someone was poking them with needles. It really hurt:( Then they started to turn blue and red. It was really weird. It was only in my left hand. Anyone else experience this? Hope everyone is doing well. Steph06

Hello Again!! So I'm in the process of applying for disability and I want to scream. For my first interview I sent in all my paperwork along with all my records from my doctors and hospital visits. About a week later they sent my records back to me. Then they made me fill out about 3 packets that were about 10 pages each. I also had to have a third party fill out another packet answering questions like what I do from the time I get up to the time I go to bed, do I do chores, who do I take care of, do I shop, do I go outside, ect. Now they want to send me for a mental exam in Oct. Is all of this normal?? They are driving me crazy!!! Just received a letter Thursday stating that they requested my medical records from my doctors and hospital visits and they are not getting a response. Are they kidding me? I already sent them my records and they sent them back to me. Now they want me to send them again. I want to scream! Has anyone had a similar experience? Thank for listening!! Steph06

If you need to talk please let me know. I am so sorry to hear what you are dealing with. Do you have any support from your family? Please keep me up to date on how you are feeling. Hope to talk to you soon. Take care of yourself and God bless. Stephanie xo

I want to thank all of you for the great advice. I am very blessed to have all of you as my support group. Like Maggie said I am not going to waste my energy on things I can not control. I am going to try and ignore what she thinks but I know sometimes it will be hard since she is my sister. In the meantime as soon as my sister tells me the magic words to make all of this go away I will be sure to let everyone know!! Thanks again for everything. Hope all of you are doing well. As always I will keep all of you in my prayers. Stephanie

Hello Everyone, Recently I found out that my sister believes that my symptoms are due to stress and what I have is not real. She said that popping pills is not the answer and if I would just talk to a therapist this would all go away. My Mom & Dad have been really supportive and have tried to talk to my sister but she does not listen. My husband even sent her an email letting her have it. I don't know what to do. Does anyone else have family or friends feel the same way? Stephanie

Great idea!! I love Dr. Oz. Please let me know if you get a response. Steph06

Hi! Just wanted to see how you are making out. You are in my thoughts and prayers everyday. Stay strong and take care of yourself. Stephanie

Hello, I am so sorry to hear what you and your wife have been through. When I read your post I thought I was reading about myself. Along with having POTS, I was recently diagnosed with Dystonia. I was also having seizure like movements and the doctors could not find anything wrong with me. Finally I was told I had a form of Dystonia. Its a neurological movement disorder. My brain sends signals to parts of my body that I can not control. It is very rare to have both chronic illnesses but it can happen. Dr. Grubb in OH said he only has about 5 patients including me that have both POTS and Dystonia. When you mentioned seizure like movements I thought this is something you and your wife may want to talk to the doctors about. If you have any questions please feel free to send me a message any time. I am praying for you and Kristin to stay strong and don't give up. Take Care, Stephanie

Hello, I am so sorry to hear what you and your wife have been through. When I read your post I thought I was reading about myself. Along with having POTS, I was recently diagnosed with Dystonia. I was also having seizure like movements and the doctors could not find anything wrong with me. Finally I was told I had a form of Dystonia. Its a neurological movement disorder. My brain sends signals to parts of my body that I can not control. It is very rare to have both chronic illnesses but it can happen. Dr. Grubb in OH said he only has about 5 patients including me that have both POTS and Dystonia. When you mentioned seizure like movements I thought this is something you and your wife may want to talk to the doctors about. If you have any questions please feel free to send me a message any time. I am praying for you and Kristin to stay strong and don't give up. Take Care, Stephanie

My heart goes out to you. Everyone is giving you great advice. Please do not give up. Becca could not have said it any better. God will give you the strength to get through this. I will pray that this all works out for you. I don't know you but just reading your post I believe the kids know how much you love them and that you will fight for them. If you give up it will be like you are give up on your kids and with all the love you have in your heart for those kids you know that is not an option. I hope you find a great lawyer. i will keep in touch to see how you are making out. Take care of yourself. You have a lot of support. Just look at all the kindhearted responses you received. You are in my prayers. Take Care. Stephanie.

Thanks for the response, I will look into it!

Hi Everyone! I'm not sure if this question was asked before but does anyone take the pill or that new shot that stops you period for 3 months? I am really bad around this time and I wanted some input on this subject before I ran to my OBGYN. I really don't want to start something new but if it would help I would want to look into it. So confused. Please help!! Thanks, Stephanie

Hi Suzy, yes it is from the movie. I did not watch the movie myself but my sister told me about the song. It is really great. My uncle recently found out that he has tongue cancer and he has been really down so I bought him the CD. He loves the song, so your right we are never to old for good music!! Stephanie

I have to have a cup of coffee in the morning to help get me going and to prevent a caffeine headache. I always drank a lot of coffee and I found that it did make my symptoms worse. I think everyone one is different when it comes to how much caffeine they can handle. (I could be wrong) As for my hands, sometimes they are really cold, bloated and blueish. What's weird is that its normally in my left hand only. When I am having a really bad POTS moments my hands are really clammy. I hope this help! Stephanie

So ture, I love it!! Thanks for sharing

Hi Maggie, This is such a wonderful idea!! I will send you my address shortly. I don't know much about quilting but if you need any materials please let me know. Thanks! Stephanie

Great song! I have to go get it Another song that I like is "The Climb" by Mylie Cyrus. My sister told me about it yesterday and I really loved it. You should look it up and let me know what you think. Here are the lyrics: I can almost see it That dream I am dreaming But there's a voice inside my head saying "You'll never reach it" Every step I'm taking Every move I make feels Lost with no direction My faith is shaking But I gotta keep trying Gotta keep my head held high There's always gonna be another mountain I'm always gonna wanna make it move Always gonna be a uphill battle Sometimes I'm gonna have to lose Ain't about how fast I get there Ain't about what's waiting on the other side It's the climb The struggles I'm facing The chances I'm taking Sometimes might knock me down But no, I'm not breaking I may not know it But these are the moments that I'm gonna remember most, yeah Just gotta keep going And I, I got to be strong Just keep pushing on 'Cause there's always gonna be another mountain I'm always gonna wanna make it move Always gonna be a uphill battle Sometimes I'm gonna have to lose Ain't about how fast I get there Ain't about what's waiting on the other side It's the climb, yeah! There's always gonna be another mountain I'm always gonna wanna make it move Always gonna be an uphill battle Somebody's gonna have to lose Ain't about how fast I get there Ain't about what's waiting on the other side It's the climb, yeah! Keep on moving, keep climbing Keep the faith, baby It's all about, it's all about the climb Keep the faith, keep your faith, whoa

While I was in his office my legs, neck, back, face and eyes were spasming really bad and he told me that is not associated with POTS. Just by seeing my symptoms he knew right away that is was Dystonia. As for the Mestinon he increased my dosage from 60mg to 180mg. It seems to be helping. What dosage are you on?

Hello All, I recently got from from seeing Dr. Grubb, who I loved, and I found out that not only do I have POTS but Dystonia as well. For anyone who does not know what Dystonia is, it is an neurological movement disorder in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures. If anyone has time they should look it up. I am happy that I received more answers but knowing that I am dealing with two chronic illnesses is very upsetting. Before I can start my meds to help with the dysontia, Dr. G increased my mestinon and wants me to wait 2-3wks to see how it helps me with my POTS symptoms first. Does anyone else suffer from Dystonia? Stephanie

Hi Nina, thanks for the information. My appointment is actually on Friday and we are staying at the hilton down the street. They did give us the discount!! Did Dr. G seem to help you. I have so many questions for him and I am praying that he can help. I have a unique situation, my husband is a quadriplegic and we have a three year old son. I am pretty much in a wheelchair myself these days. I just want to get my life back not just for me but for my husband and son as well. I will let you know how it goes. thanks again for the information. take care, Stephanie

My appointment is acutally on Friday. I am driving from New Jersey so I am leaving Thursday. My husband kept following up with the office and by some miracle I got an appointment fairly quickly. I will update you on everything as soon as I get back. Good luck with getting your appointment.