maryfw

I am fairly confident that I have had NCS all my life. Definitely since I was 15 years old at which time I was diagnosed with Mitral Valve Prolapse which I now know I do not have. At 26 a doctor told me I was hyperventilating. I didn't waste my time or money with him anymore. Finally at 39 I took a tilt table test and was officially diagnosed. I have never completely passed out and I think that is why it took me so long to be diagnosed. I also have fibromyalgia which I believe started at 17 years old. Unfortunately my 18 year old son was recently diagnosed with both Fibromyalgia and NCS. He has had to withdraw from school and do virtual school. My hubby has had Fibromyalgia for 22 yrs and now has NCS. My 21 year old son is the only one of us who completely passes out so I know he has NCS but he has not had the TTT yet.

I hate that I have passed on this to my sons. I do realize that it could be worse. I missed 3 months of work last year because of Mono which caused my NCS to go CRAZY. One fed the other and it just got worse and worse.

I take a beta blocker. Drink 64 oz of Powerade daily and have recently gone on a low carb diet which is helping me with energy. On better days I have a cup of coffee in the morning. What I hate so much about this is that one day you can feel fairly good and 20 minutes later I need to lie down.

I like my doctor but her main concern is whether I am passing out. Since I have never passed out, my main concern is my quality of life. I will continue to experiment with things like the low carb diet to continue to improve my life. I appreciate this forum and the chance to learn from others.

What is a social life?????

I have scars not just stretch marks so I dont think this applies.

There is no test for Fibro. Only tests to rule out other things. They go by our symptoms and a physical exam that tests for trigger/tender points. I have fibro &ncs too. I take a pain pill and it helps me to function. I take a beta blocker for Ncs but have days where it does not do enough.

The good thing about a cruise is it is all inclusive with your bed and room service always available. We did some excursions but did those by bus. Get a balcony room so you can enjoy the view even if stuck in your room.

I am currently trying a high protein diet to see if it helps. I do feel hypoglycemic at times but tested negative for it. What do you eat the hummus with if avoiding carbs.

If you are looking for firm, then try Dr Rey's shapewear and I know they sell it on HSN. It takes like 2 dress sizes off of you or you can size up and a less firm fit.

mary

My son will be home tomorrow morning. I will be so happy to see him. The good news is he can re-enlist if he chooses too and as early as one month but he said he will not consider it until after the holidays...........not going to miss all that good food. In spite of it all he said he had some really good experiences and we will just be so happy to get him home tomorrow.

mary

Well, he is coming home next week. He is borderline hypertensive. Good news is that he can try to go back if his bp goes back to normal which I think it will when he comes home.

I will be happy to see him.

Mary

boot camp is 13 weeks and he has 12 more weeks.

I spoke with my son's recruiter today because of the letter we finally got from our son last night. Our son mailed us a letter that he might be sent home because of his bp and bp meds etc. He was very upset and afraid he was being sent home. I thought he said in the letter that they had put him on bp meds. Well this letter was mailed almost a week ago. The recruiter actually spoke to him this morning and he is doing well. HE IS NOT ON BP MEDS AND HIS BP WAS ONLY UP ONCE AND ONLY UP SLIGHTLY. the recruiter said the climate change and also standing for such long period of times can do that. He will take his initial strength test on Sat and go into a regualr unit on Monday. The recruiter scolded him to be more clear in his letters so I dont worry so much. I am soooooooooooooo relieved!!!!!!!!!!

mary

No news is good news. No calls from him so that means he must be doing better.

mary

please keep us updated and I hope you know something soon.

mary

He has called twice. Both with not good news. The first was that his knee popped out of place while running so he is in a rehab unit right now until his knee gets stronger. He called yesterday saying that his bp was a little high (138/95)............I think he really has POTS and also thought he might have had an asthma attack. I dont think he really had an asthma attack but they are keeping a close eye on him. Any of these could cause him to be sent home. I pray for him every day throughout the day that his dream will not be taken from him. His father and I both have health issues and dont want to see our Son's dream taken away.

mary

Thank you. I am very proud of him. He has been an adrenalyne junkie all his life and i know God made him that way for a reason and he will not be happy unless he is doing something like the military or something like it with his life. Prayer helps. The hardest part is that I cant pick up the phone and talk with him right now. I do take comfort that he is in God's hands and also the Marines will take good care of him in boot camp.

mary

You know the doctors always tell you to reduce stress. Unless you stop living some things are unavoidable. My 18 year old son joined the Marines and left for boot camp this past week. I pray for him many times a day and that helps but as a Mom you are going to worry. I am very proud of my son and sad and worried all rolled up into one big ball of emotions.

Mary

I know what you mean. I live in Tallahassee as well and I feel yucky because of this weather and know it will be here with us at least of couple of days. Do whatever you can to help yourself feel better. For me, I will take a hot bath as long as the lights stay on............. With all the trees that might be a challenge.

mary

The Cipro starting working within 48 hours. I am well on the way to recovery.

mary

I thought I had the flu last week..........had all the symptoms: fever, severe chills, severe body aches, headaches, vomiting. Had it for a week and went to the doc on Friday. The only real symptom I had for my kidneys was some tenderness in my back which caused him to think of my kidneys. Turns out I had a severe Kidney infection and a severe UTI. I did not burn when I went to the bathroom. My heart rate was 130 and my fever was 103.6 and he almost put me in the hospital.

Anyone else have trouble with kidney infections?

mary

Great article. I am saving that one.

I think this is the million dollar question for us all. I would pay good money to know the answer to this one..........not that I have a million.

mary

Just shaky. You know when you reach for something and people comment that your hands are shaking.

mary

I have NCS and when I spoke to the nurse she told me to see my PCP. She said it wouldnt be the NCS because it is consistent, not just a "spell". I still think it could be my NCS but I will go see my PCP and see what he says. He will probably say what he always says, hmmmmmmmmmmmm. Got to love it.

mary

Just called and left a message for my cardiologist's nurse. We will see what she says. I just feel so weak and shaky. like when you havent eaten but I feel that way all the time. Never feel strong.

I have been having alot of trouble lately just feelin weak and shaky. Does anyone have any ideas for me? I try to stay hydrated and eat.........maybe I am not doing a good enough job on those but I wake up this way and seem to stay that way all day.

Are there any meds that help with this?

mary