could it be POTS

[Rachelinpain]

i have joint hypermobility syndrome and have had many medical problems (not related to my JHS) over the past 4 years, since the birth of my twins.  they have included multiple neurological problems such a parathesias, pain, sleeping problems, weakness, visual disturbances, fatigue, gait diturbances, etc.  over the last couple of years i have been having a horrible problem with being lightheaded and feeling like my pulse is racing.  it mostly happens after i have been standing up for about 15 minutes or so and i will suddenly start feeling like i am going to pass out, which i have a few times.  i have learned now to sit down when i have the feeling or i will fall down.  i have "whited out" 2 time while driving and was fortunaltey able to pull off the road or stop my vehicle before i could no longer see.  i have also noticed that i have a problem with swelling in my feet up to my knees that is pitting.  i have seen multiple neurologists and other doctors and was suspected of having MS but have basically been told there is nothing wrong with me.  recently i was seen by a cardiologist and did a 2 week event monitor.  i was told my echo was normal and that my monitor showed my heart rate was anywhere from 80-150 (i made a point to do NO physical activity during the monitoring process) but was also told that was normal---doesnt seem to me a HR of 150 iss normal but i did not see the actual reading.  i had a tilt table test and was symptomatic (felt like i was going to pass out and became very fatigued while upright and after) but apparently on the monitor i was not becasue i was also told that was normal.  i dont know what else to do but my family doctor can only help me treat some of my symptoms, she is not a specialist and we are both at a loss.  who else do i turn to.  we are military and it is hard to get good referrels.  any help would be great.  i am getting very tired of being lightheaded and am afraid i am going to hurt myself or someone else if i do not get treated.  i almost fell on top of one of my 2 year old preschoolers the other day.  if a chair had not been near by i could have hurt the poor child.  i have heard that POTS can go along with EDS/JHS...can you have it without it showing up on a regular test??

[Rachelinpain]

thanks jj,

i actually used to post in the ms forum...found alot of support there...i do have alot of the symptoms which is why they thought i had that but no test results to back it up so no proper treatment as i am sure you know the story...summer is approaching and i am already having anxiety becasue for the last 4 years hotter wheather always brings about more symptoms and makes me feel awful so i know it will most likely be another long summer...fortunatly virginia is not hot for too long...i may check it out again, thanks.  just looking to get well, tired of being treated like i am crazy :[

[supermum_ms]

Hey there,

I think it would be a good idea to also post this on the MS forum, we who seem to have all the sx of MS but not dx live in limbo until such time as the medics work it out. Come along and visit, great bunch of people. Most living with MS have taken us under their wings, you'll get a lot of help and support, you might be surprised at what you'll learn and just how common your sx are on the forum.

I'll keep an eye out for you just incase you do decide to check the MS forum out.

Cheers..........JJ