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I need you guys to help me take a poll, please


bamagirl
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I am going to see Dr. Low next month and I needed to know from you guys how common this is in POTS. My POTS symptoms came after a multitude of other symptoms were ailing me, therefore, I am going to stress to him that mine has an underlying cause. The most early symptom I remember having is my feet, hands going numb and tingling along with my arms and legs feeling like ants were stinging me. I was just diagnosed with small fiber neuropathy and peripheral neuropathy, along with the POTS, of course. This is mostly common in diabetes, which I do not have. I have also been tested for lyme with positive results. I just want to see how common this is with you guys so I can take it to him. So, how any of you guys have peripheral or small fiber neuropathy and was it before or after the POTS? Thanks for your help.

bamagirl

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You mentioned being treated for lyme with positive results. Have you been tested or more importantly treated for bartonella or babesia? Bartonella has the tingling I think. I sometimes get some electric waves as I am going through my treatment but they go away very quickly. I am really brain foggy right now, but thought I would mention those two...forget all the symptoms for those but the tingling and odd sensations is part of it. Might be worth checking out.

How did your POTs change with lyme treatment? Mine has nearly completely gone away. We had to change my meds and now I am having trouble standing again and having some blackouts, but it's still not as bad as it was. I asked for a stool to sit on in one store and they have me something a foot off the floor. Talk about not being helpful, when they had a regulat stool right there! Another store lets me have a stool to take around with me and it made a world of a difference yesterday. Rambling here, but my POTs is greatly improved and I haven't fainted in two weeks! Though the last faint left me bruised, but luckily my doctor saw the bruises and realized stuff had to change.

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how did they diagnose you with peripheral neuropathy? Was it just based on your symptoms, or did your doctor do testing? I also had numbness/tingling before the POTS. Also, how long did it take you to get in to Dr. Low? I have always been interested in seeing him, as my neurologist is always referencing him, but my doctor told me that he probably wouldn't see me because I too much of a "complicated" case, and that Dr. Low is more interested in "pure" POTS. This was probably 3 years ago that he told me, but I thought he said another time that Dr. Low doesn't really see new patients because he is too busy with research. Has anybody else heard this? Sorry for the tangent, I was just curious.

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That's great that you're going to see Dr. Low. Neuropathy means damage to the nerves. It is pretty common among POTS patients -- that's why many of us have pooling. The neuropathy and the POTS could well have a common cause -- it may just be that it took longer for the POTS symptoms to show up. I would definitely mention this to Dr. Low -- he will be able to figure it out for you if anyone can.

Meliss446, I saw Dr. Low over a year ago. At that time, he told me that he has to turn down 80% of the applicants. I thought he only sees the more complicated cases. The only reason I got to see him was that someone at work had a relative who worked at Mayo and got me an appointment. You may want to consider applying -- at worst you will get turned down.

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I have seen Dr. Low twice. I got the neuopathy before the POTS. I think though that I have always had POTS just not as severe. I accepted fainting as normal as a child and a teenager. Frequent trips to the doctor with stomach pains, headache etc.

Dr. Low had a resident that did my workup, then he comes in and goes over the residents asscessement with you. Usually orders tests for that day and the next. Then you see him after your tests the second day again and he gives you his recommendation.

Dawn

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Guest Belinda

tell me wht the neuropathy is my doc. said I have periphial neuropathy or told me about it..I just have numbness mostly in my left hand ring and pinkie finger..weird occasionally i feel it in leg and lots in the feet

tinglies like they are asleep

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bamagirl,

you have mentioned the lyme before and i was wondering if you had been treated for that?

there are a few folks here (like blackbirdsings) who have lyme and POTS and the POTS is probably a result of the lyme...

so, that could be your 'cause' of POTS that you are asking Dr. Low to find...

emily

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I have autonomic neuropathy, raynaud's, POTS, and asthma. I didn't get asthma until my 20's. Then, in my 30's, I started getting dizzy many times a day and had tingling and purple/blue/white in my hands and fingers. I also had weakness in my arms, stopped sweating, and was freezing all the time. I was misdiagnosed as having thoracic outlet syndrome. It took about 6 years and many doctors to get the right diagnosis. I am seeing Dr. Dotson who worked with Dr. Low. She is continuing to try to find the cause, but feels it was probably a virus. She is the one who sent me to the cardiologist and the slow message to my atria was found; although, there is not treatment for it. I wanted to see Dr. Low, but my insurance does not cover Mayo or Dr. Low. I though I would give one more Neurologist a try. I was so happy when I found out she had worked with Dr. Low. I hope you find the answers you are searching for!

Marie

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I saw him last Jan. The important thing is to just give him all your symptoms. If you got in to see him, he has your medical records. Keep a small notebook with you while you are there and jot down questions and thoughts. He will know which direction to lead.......Miriam

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Bamagirl,

When one of my vertebrae was out of place I occasionally lost feeling in one leg, but that stopped once my neck had everything back in place. When I did testing out at Mayo, Dr. Low said that I didn't have any nerve damage.

Meliss446, just to back up rqt9191's explanation of Dr. Low's business, when we asked him last April how many people he takes, he told us that he has to turn down 80% of the patients who request him simply because there isn't enough time to see them all. He took me when I wasn't "pure POTS" (POTS, CFS, wacky migraines, etc.), too. I think he genuinely would like to see more patients and get a chance to help them, but simply hasn't found a way to create more hours in a day yet. :D I'd give it a try if you think it's worth seeing him.

Bamagirl, ditto on making sure you give him ALL your symptoms! He's fascinated by the most seemingly inconsequencial information -- very interested in the high arches of my feet (and my mom's too!)! :huh: He leaves lots of time for questions, so make sure you have them written down and ready to go. Let us know if he does the Sweat Test aka "Shake 'n Bake" -- yellow powder that looks like goldenrod pollen, huge device resembling a toaster oven, and lots of purple skin! A bit warm, but completely painfree! My dad had a patient the other day who came in with the results from her test; my dad took one look at the photos and said "Ah, I know where you've been!" Best of luck!

Angela

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Hi Meliss446,

We just returned from seeing Dr. Low last week. Before seeing Dr. Low, my son didn't have any diagnosis other than POTS from 1 positive TTT. Don't know why he was chosen to be seen - my guess is because he's a male - but that's pure speculation.

Dr. Low is thorough in his testing and we gained an understanding of the specifics of my son's condition WAY BEYOND anything we'd ever had before. Of course, we hadn't had much before....

Bamagirl,

Dr. Low tests for both central and peripheral nerve problems and his Mayo bio page says he has specific research interests in peripheral neuropathy, so I would echo the others here - give him all your symptoms and the timing of their occurrence and trust to his expertise.

There's a neurology fellow or resident who does the detailed history and physical, so be sure to tell him *everything*. He's the one who spends the time with you at the beginning. When Dr. Low comes in, he just summarizes what the resident told him to sure he's got it correct. After all the tests are done, that's when Dr. Low sits down to explain it all to you and give you his treatment plan.

Good luck. I hope that your visit to Dr. Low is as helpful to you as it was to us.

Edited by momdi
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Momdi,

So were you able to get other diagnoses than POTS through the testing. I was diagnosed four years ago with no TTT and just some orthostatic heart rates/blood pressures that were consistent with POTS. I had a TTT just recently and it was positive, even with all my meds. I know I have POTS, but I always have felt that there was more going on, and that extensive testing might be benefitial. Was Dr. Low also able to offer suggestions on treatment? Also, (and this question can really be answered by anyone) how long were you there for? I am a senior in high school and am on schedule to graduate, so I can't afford to miss much school. I am doing half of my classes homebound and half at school, so it would be hard to be gone for long. Thanks for your help!

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I was there for 2 weeks. They see you then if you might have cardiac issues-you go to cardiology. His schedulers will give to you at the end of your first visit a schedule of all your other appts. If they are along time off you can go to the clinic and wait........the way things run you usually get in, take something to read.

So you as I did, might see cardiolgy, endocrinology, lab and other tests. So it is FULL for you. Tell them right when you check in neurology what your time frame is. They will try to get everything done or have you come back.

Good luck......Keep Us posted.......Miriam :)<_<:unsure:

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Oh Meliss446, my heart goes out to you. I remember back when my son was in high school, we didn't know what was going on, and it was quite a challenge for him, and for us. Now he's studying engineering at college, and it's not easy. Hang in there!

My point was that the medicine that works for one is a nightmare for another. SSRIs? Pro amantine? Mestinon? Beta blockers? It seems some people have low blood pressure, some high blood pressure. Some have high neurotransmitters, some normal. Low blood volume? Having these specific test results made a lot of sense in light of Dr. Low's recommended treatments.

Before going, I was afraid that Dr. Low would just throw a lot of prescriptions at Mike and it would be a nightmare of trial and error and adverse effects. But he only prescribed a very low dose of one med. Everything else is lifestyle modifications - adjustments in salt and water, specific exercises, activity modifications - really, getting to better understand his own body and his own reactions to this condition. Low was very clear at giving numerous specific suggestions, which all made sense in light of the test results.

The doctor's referral was made back in Sept. We heard from Low's office in October and they scheduled our visit for January. The timing was that we started on Monday morning with a work up by the resident/fellow, a brief visit with Dr. Low, then Monday, Tuesday, and Wednesday for various blood work and autonomic tests. Then a discussion Wednesday afternoon with Dr. Low. And that was it. If you would need to see other specialists, it would take longer. Oh, except Mike was invited to participate in a research study where he would come back next year and the year after that to repeat the tests and follow his progress and do some genetic tests. Angela has given some great descriptions of the tests - especially the *shake and bake* one where you go into the toaster oven and turn purple :-)

If you need a wheelchair (we didn't) there are wheelchairs to rent at the Mayo clinic desk. Otherwise we stayed at the Residence Inn and it's about a 2 block walk to the clinic, all indoors, underground. Most of the tests are in 2 main buildings. Since the clinic is all outpatient, separate from the 2 hospitals, it doesn't cover too much ground.

Hope you find this helpful.

Edited by momdi
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Momdi,

Thanks for your help and sharing your experience. Yes, high school is definitely difficult with POTS, but I was lucky enough to get a diagnosis relatively quickly. I am glad your son is doing at least well enough to study engineering. My mom is so worried about me starting college this fall! I think I will try to get into to see Dr. Low. It sounds like it can really be benefitial. And like you said, different medicines help people in different ways, so I think it is helpful to pinpoint which ones are the most likely to help. I am not sure if I will be able to get in, but I will give it a shot! My mom is pretty persistent when it comes to caring for her kids, so I know she will fight for me to get an appointment!

Melissa

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i didn't know that i had neuropathy until after my multitude of autonomic issues began but there's no way that i can know what really came first. i do know that my neuropathy has progressed a lot in the past year to the point that i have GI, bladder, and hypohydrosis that i didn't have previously.

re: the specific neuropathy diagnosis i'd had an NCS & POTS/OI diagnosis for year but the term "neuropathy" was not used for me until this past year and half b/c of actual nerve testing i've had done. including but not limited to the "shake n bake" (i love the name)...though mine wasn't the same colors and was much less pleasant for me than what was described.

hope this helps,

B) melissa

p.s. diane, i'm glad you all had a good trip to mayo!

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I had the pins and needles also. I had pots at least 10 years before the stinging started. When my pots got worse so that it began effecting everything I do that is when the pins and needles started. They went away after a 6 months and about 2 months of taking cymbalta. Iam now going off of cymbalta for a study and even though I do not have the pins and needles big time I do get a little taste of them. Once the cymbalta is completely out of my system it will be interesting to see if they come back full blast. A neurolgist did a test on me when I first started the symptoms and found nothing.

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