Darlene

I woke up in the night not feeling well, It felt like someone was rubbing ice on my face and arms. I had a funny feeling in my legs, can't explain the symptom (tingling maybe or something crawling around in side my legs). My hands and feet have been having quite of bit of tingling sensations. I have tachycardia every night I lay down, and funny thing is after I get up and move around for a bit, it goes away. weird.

mine is low. i take 50,000 IU's once a week. Dr.s like to see you level around 50.

I became sick after coming back from Niagara Falls. Dr. Grubb tested me for Lyme. The ELISA was positive, and the western blot was negative. He sent me to an endocrinologist. He said he didn't think I had it.

i just ate some cottage cheese and pineapple, and feel very nauseous. not sure if its the dairy in the cottage cheese, or the histamine in the pineapple. eggs make me very nauseous too. what foods make you nauseous?

no alex, i have not mentioned this to a Doctor. these symptoms just started. i do have an appointment with grubb and my neurologist soon. I will ask them then,

Does anyone else have a vibrating or pulsating feeling in different parts of their their body?

klcowley, i m having quite a bit of hair loss too. and everyone in my family has lots of hair. just not me

does anyone else experience pain on left side, feels like its behind my bottom rib. feels like it could be i wonder if its not my bowls.

tried them all. lexapro works best, no side effects except wait gain. tried snri's, but they made symptoms worse.

no, but i wish. i have a feeling i am dehydrated. been having all over muscle twitched too.

do i still need to make an appointment with dr. afrin? or just find a dr. that will work with him?

my blood chloride is 109. high, but not extremely high. has anyone else had this?

heres the email Your symptoms are quite consistent with a mast cell activation disorder (MCAD), far more likely the prevalent mast cell activation syndrome (MCAS) than the rare systemic mastocytosis (SM). MCAS often afflicts multiple members within a family, though often with different symptoms in different members of the family. This is due to the different members having different mutations in the regulatory elements of their mast cells. It is not presently understood why the mast cell mutations in different members of an affected family are different and acquired post-conception rather than similar and inherited from one generation to the next. It is common for MCAS patients to be diagnosed with "POTS," but there is no way POTS can possibly account for any but a small minority of the full spectrum of symptoms most POTS patients report. Although much research remains to be done in this area, I suspect most patients with "POTS" actually have MCAS as their root problem. Unsurprisingly, treatment targeting the POTS rarely helps the other symptoms which are caused by a problem more fundamental than POTS. I'm happy to see you (the process begins with your contacting our schedulers at 843-792-9300), but let me provide you fair warning on two counts: (1) My schedule is getting increasingly backlogged, and the wait at this point for a new-patient appointment slot may be a few months. (2) For many obvious reasons, it is impossible for me to serve as the primary manager of the acute difficulties suffered by my distantly located patients. Therefore, it is *essential* that you identify a local "physician/partner" who is willing to be your primary manager -- and that physician should know that I am happy to provide prompt consultative input to any physician who reaches out to me for help. Thank you for your understanding on both of these important points. Whatever you decide to do, I wish you the best of luck... -- LBA he says in the last paragraph "For many obvious reasons, it is impossible for me to serve as the primary manager of the acute difficulties suffered by my distantly located patients. Therefore, it is *essential* that you identify a local "physician/partner" who is willing to be your primary manager -- and that physician should know that I am happy to provide prompt consultative input to any physician who reaches out to me for help." What does that mean?

Who do you recommend to see at the Cleveland Clinic? I would like to se someone who specializes in dysautonomia, and can test for neuromuscular diseases. I have these burning sensation inside my body that freak me out, and would like to find the cause. I also have terrible muscle weakness in my arms and legs, and difficulty swallowing and holding my head up. I go to UTMC currently, but not gettign anywhere.

Can a person have EDS without being flexible?

ssri (lexapro) works great for me. i did try an snri, and it made my symptoms worse.

you can have auras without headaches. i get them. i see what looks like lightning, and blind spots. this usually lasts about 30 minutes. but besides the auras i have blurry vision that comes and goes, lots of floaters, and when looking at the sky i see what looks like rapidly moving, or blinking maybe tiny pin point sparks of light, and tv like snow at night.

I was dx with POTS in 2005 by a cardiologist at the FCHC. He referred me to Grubb. He is very compassionate, but I m not sure what the rave is about him. I don't feel like he is helping me. My next appointment I going to ask him to refer me the Cleveland Clinic. I would like to go to Mayo or Vanderbilt, but to far. I'm not sure what Dr. Grubb is going to do that Dr watkins hasnt done already. And no, he doesnt order a lot of testing. Grubb is not equipped an autonomic lab.

not to mention, went to oak openings yesterday. thought we were going for a little walk, ****... we got lost on a trail in the woods. after an hr and a 1/2, my legs (upper legs) were hurting so bad. i have muscle weakness in my upper arms and upper legs. i really think there is more going on with me then just dysautonomia. i am going to ask grubb if he can refer me to the cleveland clinic.

i went to the hospital today to get a copy of my medical records for ssi. i do not like elevators, so i took the stairs. by the time i had gotten to the top i couldnt breath, my heart was beating faster then i could count, and i had this burning sensation in my arms and chest, and my hands were shaking. i almost went back down to the ER, but i knew i couldn't make it another step or i would be out of breath completely. has this happened to anyone else?

what is the normal range. mine was 21, but after taking 50 IU's once a week for 2 months, it came up to 25. my dr. says this is a normal range. i still take vitamin d though.

when i woke up this morning, i felt nauseous (as usual). i felt funny (felt like i wasnt getting enough blood flow to my head), and i had this tingling feeling on the right side of brain. has anyone else experienced this?

i have lost lost of hair too. i assumed it was the POTS or the beta blocker.

Mandi, the burning is not from lexapro, it's adrenaline. I use to experience the same thing. lexapro and metoprolol has helped with the burning. i still get the burning, but not as often. don't drink caffeine, eat any foods with msg's or anything foods or drinks containing artifical sugar. The burning is very scary. Give lexapro a chance. I would be deathly ill without it.

i get this all of a sudden burning sensation in my body at times, and this did happen after taking cerefolin.