Hi Everyone,
I am hoping you can help try to figure out wether these feelings are from POTS which I was diagnosed with or something else.

I was diagnosed with POTS after seeing a specialist who was trating me for severe Syncope episodes.

Howevere recently I am know getting pins and needle sensations in my face, feet and legs. I also get muscle twitchs in my legs and sometime my arms. My vision is usually good but seems to get blurry at times. I also get feelings like I am moving (like being pushed my a wave) that only last @ 5 minutes...but this happens alot. I have neck pain and headaches- that are not localized to one area.
My questions is can this happen with POTS are can it be something else like MS or lyme? Should I invistigate these further with a Neurologist...or do you think I should calm down and realize that POTS can cause other symtoms?
Please help! I am sick of being the girl that crys wolf all the time, but I can't help but be nervous.

Christine

Christine,

I want you to calm down. First, no one knows your body better than you. If it is something out of the ordinary for you, it is important.

Second, I have heard others here have those symptoms, BUT, you should always check out new/different symptoms with your doctor. If it turns out to be nothing (often, it is hard to pinpoint what is related to what), at least it is documented in your medical notes for future reference.

With any pins, needles, I always rule out anything neurological. Talk to you regular doctor and see a neurologist. Explain what you are going through. It is always better to be safe than undiagnosed.

With my son, as his dys has "set in," we have seen his symptoms change. He started with syncope, sleep attacks/paralysis, shortness of breath and heart palpitations. Now, we have body temp spikes, chronic fatigue (just diagnosed with this, too), gastro issues in addition to other symptoms.

Always check it out and take care of yourself. You are not the girl who cried wolf, just another person with a disfunctional nervous system.

Judi

Christine,

Welcome and I'm glad you can find support here. All of our cases of dysaut are different and must be handled by a doctor on a case by case basis. It certianly helps to talk to other people who know what you're going through though, doesn't it! I love this place.

I agree with Judi, the best thing is to remain calm and consult your doctor about any new symptoms that evolve or develop. My symptoms seem to change on a weekly basis. New ones develop and ones I haven't seen in months resurface. My best comfort is to talk to a knowledgible doctor.

I also agree with Rosie. DEFINITELY check out what side effects are to the meds you're on. I've noticed somethings developing that I didn't know were being caused by my medications until my mom read the side effects.

Take care and keep in touch ok? Best wishes!
GoArmy
PS I get tingly feelings too. Docs attribute it to dysaut but not necessarily specifically POTS.

Thank you all so much for your wonderful answers.
I just remember times going to the doctors where they do test after test and see nothing wrong and then tell me it's all in my head- when I know it's not.

I used to see a Neurologist when I was having nerve pain, so i am hoping I can see hime again. The problem is that I live in Rhode Island and their are no Doctors that know anything about dsautonomia.- I feel like sometimes I have to teach them!

Again thank you for your help,
Christine