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

I can relate. I had in-laws who made similar comments, which in turn, made my husband think the same way. Now, my marriage is ending with the dissolution being final on monday. I had a new doctor imply I had munchausen syndrome and send me to a shrink, even tho I brought all my medical records to him. Some people just don't get it and never will. All you can do for your own piece of mind is ignore the non-believers.

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 bjt22, I will have to look that one up. I don't think I have ever heard it.

Hi Stepho6, is that from the movie? My kids, (and I) want to see the movie, but just haven't been able to. I will listen for it.

Hi Erika, We are never too old for good music! Even if we make our kids laugh!

Suzy

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

Hey guys

just thought Id follow up on yet another theory.

Just hoping you can spare the time to answer a few quick questions:

1. Does caffeine decrease or increase your POTS symptoms?

2. Please explain how you believe it helps/worsens:

3. When symptomatic, are your hands and feet warm, red and bloated or cold, blueish or pale and clammy?

thanks!!!

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

Greetings Everyone! Just wanted to share this terrific quote:

The fellowship of those who bear the Mark of Pain. Who are the members of this Fellowship? Those who have learned by experience what physical pain and bodily anguish mean, belong together all the world over; they are united by a secret bond.

~ Albert Schweitzer

So ture, I love it!! Thanks for sharing

Hi my name is Maggie and I have been on this chat forum for a few months now and can't say how important this site is to me. I have pots and when I found this site it has helped me so much. I enjoy all the discussions and questions that everyone raises and it's really good to know I'm not the only one out here with this. I saw the notice asking for stories from Michelle Sawicki and wrote her that I can't write, but I can quilt. I'm am an heriloom quilter and have had to give up my business due to pots. I can still quilt, but I can't do the art shows because of pots. I offered Michelle to do a quilt for dinet and she liked the idea. I know everyone here likes the site because of the privacy that it brings. In order to do this quilt my thoughts are: 1 you can pm me with your address if you want and I will send you your quilt square. It will be 51/2" square. You may place anything you would like on this piece of fabric, I would like it to have something to do with you personally. It should have your code name on it, maybe your dx and some thought you would like to see used, all written in permenant ink. Please only use 5 inches of the square, I need 1/4 around to sew it together. When the quilt is finished we will upload it so all can see and maybe acution it off for dinet. I hope you all get involved with this project and I'm looking forward to working on it and with you.

Maggie

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

I'm glad you found out something important at the visit, although it wasn't what you wanted to hear, I am sure. But at least you know what you're dealing with which is half the battle, right?

I looked up Dystonia - were you experiencing any of the symptoms with it? How did Grubb discover it?

I have recently started Mestinon for my POTS and I think it's helping a bit. What dose did he put you on and does it seem to be helping?

Good luck with all this.

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

I went to Dr. G for a second opinion on my diagnosis back in 2001 and learned a great deal. I went for a follow up 2 years later. FYI, I also live in NJ--long drive! We stayed at the hotel right on the same street as the hospital, and got a discounted rate as a patient (mention when calling that you're a patient). The 2nd time, we stayed with friends, so that helped.

He doesn't typically order tests for patients coming from a distance--rather, he and his team will do an extensive history and examine you in the office and take it from there. He's also be available to my local doctors for opinions on meds and has given them some direction when they've not be sure what do do next.

Nina

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

hey steph, I'm in the process of being referred to him as well. I can't get my appointment though until they receive my records from my referring doctor.

I did however talk to the appointment scheduler and she said the first appointment is just a consultation. I hope that's not the case as I really don't want to have to fly there twice.

When's your appointment?

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.