Psalm 23

I think this is a good one.

http://mastcelldisorders.wallack.us/yabb/YaBB.pl

Great to hear how well you are doing. Here's to continued improvement.

Praying for a successful surgery.

I have a placard and just use it as needed. It really is great to have. It was easy to obtain. Just be straight forward with your PCP about why you need one. I filled out my part of the form and took it with me to an appointment. My doc filled out his part and I took the form to AAA where they issued me the placard.

Best of wishes to you,

Janet

DeGenesis, you're right on the Levine exercise over emphasis and risk of physician misinterpretation I probably should have posted a link for the most recent of just Dr. Raj's articles or another one without the exercise bias. I am a believer in gradually incorporating appropriate exercise into a POTS treatment regime but it may not work for everyone and it is certainly not a cure. It's what was recommended to me by my Mayo Neuro as was medication etc. All of which have proven to be very helpful. I do understand the frustration of trying to make physicians understand the POTS picture and all of it's complexities. You're fortunate to have physicians that are open to learning about this devastating disorder. I was not so fortunate and did not receive appropriate care and treatment until I went to Mayo.

If I stumble upon any other articles I think might be helpful I will post them.

Janet

The most recent Mayo Proceedings.

http://www.mayoclinicproceedings.org/article/S0025-6196%2812%2900896-8/fulltext

Hi and welcome to the forum. I believe this is one of the newer articles written. I will post any others I find. Different doctors have a somewhat different take on things.

http://crm.cardiosource.org/Learn-from-the-Experts/2013/02/POTS-Diagnosis-and-Treatment.aspx

I hope you find the answers and treatment you need.

Janet

I have a worsening problem with dependent red/purple mottling to hands and lower extremities ( bottoms of feet as well ) and up until two months ago I thought I had a hyperpots diagnosis as I have significant orthostatic hypertension and had a standing NE level of nearly 3000. Because of my inability to attend a final neuro appointment though back in 2011 I misunderstood what my findings represented. In any event I finally returned for follow up appointments and found I actually have a diagnosis of neuropathic pots with a hyperadrenergic component as well as other diagnoses. Pots sub typing is not as straight forward as some believe. How many neuropathic pots patients end up on clonidine and mestinon. I believe Vanderbilt recognizes that many pots patients have combinations of more then one sub type. In regards to the reason for and mechanisms behind dependent discoloration I don't think there is a clear cut answer on that one as yet.

Janet

This is a link to Dr. Raj's POTS article where he brings up the the subject of mottled looking legs and its relevancy to POTS.

http://www.ipej.org/0602/raj.htm

Hi Sarah,

I'm so so sorry you are having to deal with such serious and frightening health issues. I wish I had some useful information for you. I just wanted you to know that I am thinking of you and hoping this new Epileptologist will be of enormous help to you in providing much needed answers and an effective management plan.

Janet

Rachel, thank you so much for sharing the informative articles. Like Natops, I also am positive for the N-type Calcium Channel binding antibody which has been associated with autoimmune encephalitis. I do not have that condition however but am left with many unknowns. The presence of this particular antibody can be a marker for cancer or an autoimmune process if cancer is not detected over a period of time. An association with autonomic nervous system conditions would appear to be unclear which makes it really difficult to determine if it could be the cause of some individuals POTS like mine. The possibility of neurological autoimmunity is mentioned in lab interpretations though.

I'm so thankful for you and Tyler that a cause for his POTS was determined. Bless you for your persistence and fantastic mothering. I pray the IVIG proves successful.

Janet

Issie, thank you so much for your persistence. It paved the way for others of us who have benefited so much from this more open approach to treatment. I really appreciate all your effort.

Janet

Alicia, you might find it helpful to implement the recommended diet on the Canadian Mastocytosis web site or another low histamine diet and see if it benefits you in any way especially since you are not able to tolerate the histamine blockers even if a MCAD treatment plan is recommended for you. I recently started taking a MCAD cocktail that was prescribed by my POTS specialist ( Pepside, Allegra and Cromolyn ) but also implemented the above referenced diet and am realizing some amazing improvements in some of my symptoms. I plan to try and one by one reintroduce some of the foods back that I especially miss and see what happens. Basically this is an extreme elimination diet but one that I think will be well worth it in the end. I do realize you are wanting to receive a diagnosis first but for many that can be illusive and as Chaos has pointed out there are POTS specialists now that will prescribe MCAD meds in spite of negative testing if they are fairly convinced that there are mast cell issues involved. There are articles out there supporting this approach because of the significant number of individuals that test negative but have a history and symptoms that would support a MCAD diagnosis.

Janet

I was on Lyrica for about 18 months and while it did help neuropathic pain and sleep issues to a degree I started to notice that I had developed depression and anxiety issues that were very unlike me. I had to slowly taper off of it which was very difficult. I'm presently on Gabapentin which is extremely helpful for me. I'm sorry Gabapentin was problematic for you. It really is trial and error. Everyone has such different responses medications.

Janet

In regards to your salt question I use sea salt instead of tablets. I mix it in a small amount of water and just swallow it quickly. I follow it with a large amount of fluid to further dilute it out. I also take it with my meals so I have food in my stomach as well. I don't experience any nausea taking it this way.

Janet

I will be praying for you on June 10th as well Katybug !

Janet

Hi gjensen,

I'm sorry you are having to deal with this. Feelings of shortness of breath and lack of air are frightening. Katie is absolutely right in recommending you find a qualified sleep specialist and have a sleep study done. A Pulmonologist is usually going to be the best qualified doc to see. Its sounds as if cardiology studies may be needed as well. Hopefully you don't have any underlying cardiology issues responsible for any of this. I hope you find answers and relief.

Janet

I have been diagnosed with both autonomic and small sensory fiber neuropathy. These diagnoses resulted from abnormal autonomic reflex screen, qsart, skin punch biopsies, symptoms and neuro exam.

I have found taking Alpha Lipoic Acid to be of some benefit in relieving pain.

Janet

I have just recently been diagnosed with iron deficiency anemia. I have never had that problem before. We don't yet know why. I consume iron rich foods and I am not losing blood so I have been referred to a hematologist for evaluation. I guess absorption issues will need to be explored at some point. I have developed more of a problem with keeping my weight up as time has gone by. I do have very high catacholamine levels but I don't know if that is in any way related to my anemia issue.

Janet

Thank you so much Lyla. I appreciate your thoughts and well wishes.

Janet

Corina,

Thank you so much for you kind response and good thoughts. It is much appreciated.

Natops,

I am very sorry you have this antibody as well. Thank you so much for your PM response. I am so grateful for your willingness to share.

Janet

So I returned to Mayo a few weeks back for an overdue reevaluation and found to my surprise that my N-Type Calcium Channel Ab serum lab result was abnormally elevated. It had been normal 2 years earlier. I had never really given much consideration to what it meant to have a paraneoplastic panel run and the possible implications. So I am now scheduled for CT scans of the chest, abdomen and pelvis as well as a mammogram and gyn exam. It's a bit scary and overwhelming. In any event I wondered if there were others on the forum dealing with this issue. You can PM me if you like. Thank you so much.

Janet

I take 600mg of Alpha Lipoic Acid daily. I had been cautioned that there was the possibility of an increase in blood pooling but I have not found that to be the case with me. I believe it may help decrease my neuropathic pain to a small degree. If you do a search you will find other postings on ALA.

Janet

I take 1000mg of turmeric a day. It was recommended to me by a Mayo doc. I was also told that it had to contain black pepper for it to be effective. The brand I use is Doctors Best. I have been taking it for about 2 1/2 years and have not noticed any side effects from it. At this point I am taking so many supplements though I really can't say whether it makes a difference in my condition or not.

Janet

It restrains my tachycardia, has greatly reduced palpitations, has improved slow gastric motility and improved thermoregulation issues. It initially seemed to help with fatigue but that is unfortunately no longer the case.