LisaColumbus

I get tremors in my hands if I have been standing too long, right about the time my chest starts hurting and my throat starts to close up. The weirdest symptom I have is a feeling of tremor in my head. Try explaining to your doc that it feels like your brain is shaking and see what kind of look you get

Is there any way you can go up a day ahead of time and get a hotel for the night? I do that when I have a morning appointment with one of my out of town docs. I don't function in the mornings either. For that matter I don't function in the afternoon or evening either, but mornings are definitely worse.

I am so sorry for your loss.

1-866-GET-INFO

I just saw the above number on CNN. They said this is the number to get info on the missing

Hi Poohbear, the Salvation Army will try to help locate missing persons.

Connect with Loved Ones:

> SATERN - The Salvation Army's Team Emergency Radio Network has been activated. Click here to send a health and welfare request regarding family and friends you otherwise are unable to locate...

http://qso.com/satern/emailfrm.htm

I hope this helps. I will keep you all in my thoughts and prayers. What a tragedy.

Hi Lisa,

I am in the process of applying as well. I looked high and low to find an attorney willing to take on my case prior to be denied. I wanted to be sure that I didnt say something wrong on the inital application that would come back to haunt me later. I have finally found someone willing to take my case. He is currently reviewing my medical records and my SSDI application and should be submitting it later this week. Hopefully those of us in the process of applying can share helpful tips as we head down this path. Good luck to you!

Lisa

I TOTALLY agree with Chrissy. Bev is fantastic and has been a Godsend for my sister and I. She does not have the ego that so many in the medical field have. If she isn't sure of something, she will ask Doctor Grubb and get back to you.

Omg I just had the most wonderful Dental visit....and I hate Dentists! The last time I saw my actual Dentist and not the Hygenist was a little over a year ago. At that time I had to have extensive dental work done and I had them knock me out completely for that. The anesthisiologist at that time wanted to use specific meds and take precautions due to my POTS and NCS. My Dentist was unfamiliar with the conditions so I gave him a quick explanation. He said it was very interesting and he was going to read up on it. I just blew it off as another Doc patting me on the head and saying "there now, you will be all right"

Today I went in to get my teeth cleaned. The hygenist called the dentist over because she wanted to ask him about my medical conditions etc. To my amazement, he thoroughly explained what POTS is, what happens to a person body when they have POTS, explained blood pressure, heartrate, venous poolong, hypovolemia etc. He then went on to look through my list of meds and explain the mechanisms of how each work. I have to tell you, I am in shock. The Docs in the ER have no clue what POTS or NCS is yet my Dentist has a perfectly clear understanding of it. He even told the Hygenist to note in my chart not to use certain meds with me. Wow!

Just be careful. If you have fever vomiting, stiff neck and severe headache that can also be meningitis. This can often follow a viral infection.

I was on 10mg 3x a day. I had to quit because of horrible non-stop headaches.

I was on Adderall last year and it was a miracle drug for me for about 10 months. Had to stop it because of severe weightloss and insomnia

I still don't understand why they won't put you on Florinef without this test. Florinef was one of the first meds my sister and I were placed on and the only test that had been done at that time was tilt table testing

I had this test....after having over 40 vials of blood drawn and being injected with radioactive isotopes three times, I was able to get a report that neither me or my Doctor understands. It did tell me that I have severe venous pooling (my blood pools in my extremities, I already knew that) And I learned that the blood travels from my heart to my lungs and back, faster than normal. But I have never been able to get an explanation as to if or why this measurement is even important.

I was placed on Florinef long before ever having this test done. I personally think that specific test is a waste of time, energy and money but as with any testing, I have to recommend that your discuss it with your primary physician.

Hi Corina, I definitely have the same problem. Typing is a huge issue. I often find that I leave the endings off of words, leave out words or type completely different words than what I was thinking. Spelling, which I have never had trouble with is now a huge issue. Proofreading has also become very difficult. Thank God for spell check. If I write it out by hand I don't seem to have the same issues although my handwriting has become pretty illegible. Math skills have become non existent. Especially anything I need to add in my head etc. Vocabulary has seen a huge decrease. It's very frustrating because I feel like an idiot half of the time. The docs don't find that it's a problem, I guess my low functioning ability is still higher than many of the people they see.

Mine fluctuates between 38 and 80. A lot of help huh

I had often wondered the same thing but then I reached a point where I was unable to care for myself and ended up having to leave my home and move in with someone else. I'm still just as sick living elsewhere.

Michelle is there any way the brochure can be posted as a .pdf file so that members can download and print their own copies of the brochure?

Hi Sonshine,

I recently had an ablation performed-June 2005) for SVT, during the EP study they also found atrial flutter, atrial tachyardia. They ablated the AVNRT. The ablation didn't do a darn thing for me. My pulse still goes thru the roof anytime I sit or stand up. I still have all of the same problems with extreme fatigue, chest pains, shortness of breath, dizziness etc. I am also on Mestonin. I guess I am one of the 50% that it does seem to help much. The only thing is has done is relieve stomach issues, but also gave me a new problem...Ulcers. If your pulse is racing upon assuming any type of upright position I would tend to think that it is definitely POTS, hopefully your Doc can get it narrowed down for you.

Have you considered adoption or fostering healthier children? I just think it would be great to give an otherwise "unwanted" (for lack of a better word) child a better chance at having their own life fulfilled.

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In re: to adopting/fostering "healthier" children. Many of the kids that are in foster care or available for adoption will have lifelong emotional and/or health issues. Many are born drug or alcohol addicted or have been bounced around the system for so long that they suffer from RAD, PTSD, OCD, ODD among other issues. If you are lucky enough and have enough money for an adoption of a healthy newborn, most times you will need to be emotionally prepared to handle an open adoption. Many of the kids who are adopted, be it newborn or older child adoption, also go through wishing they hadn't been born or wishing they had been aborted. Being placed into a loving home is not a cure-all for the emotional issues these kids can face. Also, as far as being "unwanted", the many of the kids placed for adoption were in fact very much wanted. Their parents either couldn't or wouldn't raise them, which has nothing to do with being wanted.

Good luck to you and your daughter. I know how tough it is to worry about our kids. My youngest daughter has been through open heart surgery, hernia surgeries and a spinal fusion. I was a wreck each and every time.....this time next year you won't be able to believe all the worrying you are doing now. Do you have a good pediatric cardiologist in your area? It seems like the pediatric docs are always so caring.

Dr Grubb is supposed to be out the entire month of August. I'm hoping he hasn't relapsed.

My thoughts and prayers are with you

Lisa

I didn't even think about the law schools! What a great idea. Thank you

Lisa,

There are usually Disability Advocates at the County Assistance Offices. At lesat that is how it works in PA. You can try that route. They also sometimes know of attorneys who handle the cases.

My advice...and I am going to be very firm here...GET A LAWYER. Don't mess around. Don't file yourself. The lawyers can only charge you a small fee based on how much you get in disability and it is worth every penny. They will fill out ALL of the paperwork for you and do all of the work.

Emily

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Thanks for the advice. I have called over 20 attorney's. None of them will help until I have already received my first denial! That's what is so darn frustrating...I'll keep looking though.

Hi all, I am in the middle of filling out my inital paperwork for SSDI. Geez, talk about a mental work out. I'm frustrated almost to the point of tears. Do any of you know of any Advocates (not sure if thats the right word) that will review your paperwork before you submit it. To check the wording etc to make sure you have it filled out as best it can be?

Thanks

Lisa

Congrats! Keep giving those fingers a workout!

Hi Rachel,

I am a patient of Dr Grubb's but I have been to Cleveland Clinic. The facility itself and the staff are fantastic. The testing was first class. The follow-up and actual treatment was non-existent. I would highly recommend it if you are going for testing only. That's just my experience, hopefully others have had better experiences.