lgtaylor100

Years ago before I had any obvious symptoms of dysautonomia,I had a buzzing electrical feeling in my legs. I went to the doctor and he said it was probably a pinched nerve, but now I wonder if this could have been an early symptom.

I forgot to ask if this is something you are born with or if this can occur later in life?

I don't know if I have mitochondrial disorder but the integrative doctor that I went to recently suggested taking Life Extension Mitochondrial Energy Optimizer which you can get on Amazon. Take a look; the ingredients are listed. I've been taking it for just a week and don't notice any difference in how I feel but I thought I would put the suggestion out there.

I have most of the symtoms and also have cervical stenosis. I have been to several neurologists and not one of them have mentioned this. Any suggestions for how to proceed with investigating this. I have had MRIs, MRAs and MRVs but nothing has shown up.

Lynne

What a great thread. I have also read a lot since I got sick. Here are my favorites:

11/22/63

Bel Canto

Cleaning Nabakov's House

The Devil in the White City

The Double Bind

Faithful Place

I Think I Love You

The Paris Wife

State of Wonder

The Submission

While I Was Gone

In the Garden of the Beasts

i should chime in here about reverse T3. The new integrative doctor is testing me for it. Has anyone been tested for it and treated as a result of abnormal results?

Fatigue has been my worst symptom since the beginning of this disorder. All of my thyroid tests have been normal so far. The integrative doctor ordered a reverse T3 blood test to look for Wilson's syndrome which is a disorder of the thyroid which does not show up on the usual thyroid tests. He is also having me track my temperature three times a day for a week since low body temperature is an indicator of thyroid disorder.

In addition, he gave me a kit for urine and saliva testing for neurotransmitters. If they are problems in this area I believe he will treat with supplements.

In addition, he gave me a kit for urine testing to test if my liver was getting rid of toxins. Although I have been tested for Lyme many times he also took blood for a lyme test that is supposedly more sensitive.

He increased my ALA, Coq10, and gave me a mitochondrial formula supplement. I haven't started any of this yet because I am getting nerve block shots for spinal stenosis next week and the pain management doctor does not wanting me taking any supplements prior to the procedure.

My follow up appointment is not for two months, but I will let you all know how this all works out. Has anyone been tested for reverse T3.I may start a separate thread for this.

It seems my stamina has become more problematic so I'm hoping that some of this helps.

Lynne

Lemons - Your posts have been so inspirational to me. I feel so badly that you are having such a hard time now. We all hate this disease and what it has done to our lives. Please look at the way you are feeling now as a bad day or a setback. You are not back to square one. Your positive attitude will return.

Lynne

I also took it for a few days. It didn't work for me. It gave me more energy for about an hour or so but my crash was much worse than my usual crash.

I understand that there is some kind of water soluble glue that works to keep them up. They have it at medical supply stores.

Good poll Naomi. I often wondered how others experienced this. For me it's hours at a time, usually in the late afternoon or early evening. It is a significant improvement and during periods of wellness I experience this everyday, although the mornings and early afternoons are still bad.

Lynne

I just got my first pair of compression stockings which are knee high. I think they helped yesterday but of course not sure yet do to the variability of this disorder.

If I do decide that they are a help, what do you do in the summer? Even the beige ones are very thick and ugly and I like to wear sandals in the warm weather with no socks.

Those of you who have been wearing compression stockings or socks, what do you do in the warm weather.

Lynne

Naomi - I get tingling in my face also. The doctor who did the sensory test for SFN said it is part of that even though they did not do any specific tests

on the nerves on my face.

When I first got sick tingling under my eyes was one of my first symptoms and no one knew what that was.

Lynne

Lemons -

Thanks for your post. It was very encouraging.

I was doing well for about three weeks. I have lumbar stenosis and had nerve block shots so I was able to do some walking and did every day. Then my back and legs started hurting again ( I have to go for the second in the series of shots in two weeks) and I cut back on the walking. On top of that I got a sinus infection which appears to be lingering. It's hard to remain positive with setbacks but I need to keep pushing through as you say despite setbacks.

Thanks for your info and encouragement,

Lynne

I find that when I am nauseated (not a common symptom with me) I sometimes sneeze just once and I am no longer nauseated.I could never understand it, but what Julie said sounds right- a neurotransmitter release from the sneezing.

Good book; mostly geared toward adolescents and young adults

My cardologist developed POTS after his mother died. He is now recovered and is quite knowledgeable about autonomic dysfunction. It is possible that the stress of his practice plus the stress of his mother's death caused POTS. He told me he was quite sick and was thinking that he would have to close his practice. Florinef helped him. I suppose that is why he was very surprised when it didn't help me.

I've been doing a little better. I've been taking everyone's advice and trying to exercise, so I've been taking walks most days. I've been trying to strengthen my leg muscles and improve vasoconstriction. I also try to reduce my amount of lying down time and sit for rest instead. I've also gotten nerve block shots in my back which helps with leg pain and enables me to walk a little bit. I still have some dizziness but it is improved somewhat. My fatigue is still my biggest problem but it's hard to fix that.

What I am suffering with most today is the coat hanger pain ( mostly neck pain but some shoulder pain too). Does anyone have some suggestions for what might help with that?

For the general population the rule is your weight divided by two (in ounces). So for us it is more but I am not sure how much more.

Kimbelgirl -

I am really interested in this. My mother pointed out the red dots on me the same summer that my symptoms appeared. I had them before that but they seemed to proliferate that summer. Where did you read about the connection to mast cells? I'd be really interested in knowing more about this. Most doctors have said they are nothing and some said they were age spots. I identified them myself as cherry hemangiomas or perhaps adenomas.

I got them early on also. Doctors also weren't concerned. I think the timing of them was significant.

Mully -

I had a renin /aldosterone ratio done. It was basically normal except the aldosterone was on the lower end of normal. Is this the test you were referring to?

Thanks everyone for your responses. This is so confusing. It works rapidly for some; takes months for others. Salt loading works for some, bad for others. My autonomic doctor has not given me a specific answer about salt loading. He seems to hedge on the issue. On my next visit I will press for his opinion on upping the dosage and maybe something more concrete on salt loading.

I tried .1 Florinef for about four weeks. I didn't get any unbearable side effects, but it didn't work. I didn't feel any better. Heart rate was the same upon standing and dizziness continued. Did anyone else have a similar situation. No bad side effects just no help either.

Thanks Issie. I had the genetic test for AS and it was negative. At one point, because I also have neck pain, I suggested EDS to my doctor but he said I don't have it because I don't have the usual hypermobility. Still I think there is something systemic that is causing all of these osteoarthritis and spinal issues. It is tough to convince my doctors of that. I am getting nerve block shots in a few weeks.

Issie - What anti-inflammatory things do you suggest?