Psalm 23

Hi Kris, I'm so sorry for all you have been going through. How horribly overwhelming. You're correct in that there are some Hematologists/Oncologists that deal with mast cell disorders. In fact I believe Dr. Afrin is a Hematologist. My Neurologist is the one who diagnosed and is treating my mast cell activation disorder. Because of finding that a significant number of his pots patients exhibited possible mast cell issues he decided to venture out of just the realm of neurology and into immunology as well. Unfortunately there would appear not to be very many docs for mast cell patients to see. Some of the mast cell forums have a list of mast cell docs they feel are acceptable. You might want to check that out. If I didn't have a neurologist who was willing to help me with this issue I would have traveled to one of the recommended docs on the mast cell forum. It's a diagnosis definitely worth pursuing as the treatment can make a world of difference. Obviously much of the recommended treatment is OTC but the cromolyn oral solution is not and in my case has helped enormously. Best of wishes to you in finding a mast cell doctor, Janet

Hi Rich, I'm not quite sure how to answer your first question in that I do have chronic fatigue but am no longer sure about my previous CFS diagnosis which was given me a number of years back. That diagnosis never fully explained all of the issues I was having but it explained some of them and I was happy to have any diagnosis at that point. I certainly met the criteria for it and had the diagnosis confirmed by two different neurologists and two different rheumatologist. A short time later I was diagnosed with POTS. CFS and POTS diagnoses combined still did not explain all of my issues. Several years later I ended up with more diagnoses added on ( AAN, MCAD, SFN ) which better explained my symptoms. Now when I ask do I still have a CFS diagnosis in addition to everything else. I don't get a very clear answer. Because of this I do follow all of the latest CFS ( now SEID ) information. I read Phoenix Rising and other sites but have not formally joined a forum. For myself I wonder if mast cell issues are what is behind my CFS symptoms. Maybe my CFS diagnosis from all those years back was incorrect. I have no idea. I can't help but wonder if a number of people with a CFS diagnosis may in actuality have the wrong diagnosis. Fatigue and post exertional malaise though are by far two of my worst most debilitating symptoms so I will continue to follow the CFS research trail. There does seem to be a lot of CFS and POTS overlap. Unfortunately as has been pointed out there has not been enough CFS research funding. There are still so many unknowns. For myself, as I had always suspected it is now thought likely that my battle with meningitis a number of years ago was what triggered the development of auto antibodies against my autonomic nervous system. I am now awaiting approval for IVIG. Janet

Hi Faye, I attended a dysautonomia support group gathering a while back that Dr. Cannom opened up to forum members. I had an opportunity to listen to him speak and to meet him as well as a number of his patients. Dr. Cannom seemed knowledgeable. He was very warm and engaging and his patients seemed to love him. Many of the patients and other attendees I encountered at that support group had pots as well as a number of other issues. I already had a pots specialist at the time so I can't comment on Dr. Cannom from a patients perspective. Best of wishes to you on a productive appointment. Janet

Hi Katy, Basically my doc wrote out a prescription for the Ketotifen ( it comes in 1mg and I was to take 2mg Bid ) and then I got on line and decided which Canadian pharmacy I wanted to use. I settled on Marks Marine Pharmacy. I filled out the required paper work on line and faxed them a copy of the prescription. Some of the companies require the original script be mailed to them but not this one. I had to give them credit card information for billing and several weeks later the Ketotifen arrived. I was very satisfied with this company. Unfortunately I developed a problem with increased rashes, itching and severe tiredness and had to discontinue the med. My doc thought I reacted to a filler in the drug and not the drug itself. I have had thoughts of wanting to try this med again but maybe through a compounding pharmacy so as to avoid the fillers. Some people on one of the mast cell forums talk about a compounding pharmacy in Washington State that they use. I don't quite understand how this would be possible if Ketotifen is not FDA approved in the US but they seem to be able to acquire it through this route. At some point I plan to explore this further. I hope you have success with this medication. It sounded very promising to me. Janet

A few years back my nails which had always been very healthy became very ridged and thin with layers which would peel away. About the same time I was diagnosed with iron deficiency anemia. My ferritin was 3. After starting iron pills twice a day and getting my ferritin back up to a normal level ( which took 18 months ) my nails finally recovered. Apparently this nail issue is a common anemia symptom. I was also suffering from significant hair loss during this time which has also corrected itself. I haven't heard of any nail issues associated with EDS.

Evergreen the negative effects from the coconut oil only lasted about four hours or so. I'm sorry you're feeling so poorly. I hope your health improves soon.

Hi Evergreen, I don't seem to tolerate coconut oil either. Last year I think it was my sister recommended I use coconut oil as a moisturizer. She swears by its health benefits. She eats it and slathers herself in it. Well it made me extremely ill. Dizzy, weak, nauseated etc. I had to get in the shower and scrub it off. Eating it makes me really nauseated as well so for whatever reason coconut oil brings on very problematic symptoms for me. Could be a mast cell issue.

I have what is also called a labile blood pressure. It can be anywhere from 80s/40s to 200/110. I have been tried on numerous b/p meds over the years but am now on just 0.05mg Clonidine at bedtime because it's not possible to treat the high end of my b/p without ending up with hypotensive episodes and risk passing out or just too much tiredness from the medication. I had an apt with one of my local docs on Friday and my b/p was 177/105. He just rolls his eyes. Although I am concerned I have just had to accept this issue. My pots type is neuropathic with a hyperadrenergic component. As you can see I have other diagnoses as well.

Hi Tara, I have a diagnosis of autoimmune autonomic neuropathy as well as a number of other things. I am positive for the n-type calcium channel binding antibody which is part of the paraneoplastic panel. When I first became positive for it there was a cancer concern and I had to go through a series of CT scans and gyn exams which were fortunately negative. That was18 months ago. The level has been retested three times and has remained abnormal but it is no longer being interpreted as a cancer indicator but an indicator for the presence of other antibodies adversely affecting my autonomic nervous system. The n-type paraneoplastic antibody is found in many patients that are diagnosed with AAN and are cancer free. I had meningitis a number of years ago with a very elevated protein level in the spinal fluid and it may likely have been the trigger for autoantibodies. It has taken a very long time to finally arrive at this diagnosis. In any event I was prescribed Mestinon for POTS back in 2011 and it has proven to be one of my best medications in terms of symptom control. In regards to the recent AAN diagnosis I was offered IV Methylprednisilone or IVIG. I hope this information is helpful. I pray you find the answers you need. Janet

Hi Sylvie, I was prescribed Clonidine about four years ago by my pots neuro for my odd variant of neuropathic pots with a hyperadrenertgic component. I had very high NE levels and extreme jitteriness which it greatly helped. I can see where it could possibly help anxiety if given in the right amount. I was started on 0.1mg bid and other then tiredness which wore off after a few days I didn't experience any problematic side effects. When tried at a higher dose however I was unable to function. Other then mestinon it was one of my best medications for quite a while. Over time my system has changed and my neuro felt it better for me to just take clonidine .05mg at bedtime as he thinks the higher dose is now doing me more harm then good. Basically now increasing fatigue and my already very labile blood pressure to hit lows ( 90/49 ). If you have hypertension hopefully you won't experience this problem with it. My b/p can be up to 200/110 but then hit lows as well which can cause problems with taking a medication like clonidine. If your doc is agreeable it may be worth a try. In regards to alcohol intolerance I also became alcohol intolerant a number of years back. A neuro I saw a long time back associated it with CFS. A diagnosis I was most likely erroneously given. Alcohol intolerance is common with people that have mast cell disorders. I believe it is thought to cause degranulation. For myself the most likely reason for having alcohol intolerance. I hope you find something that is helpful, Janet

Hi Katie. I'm so glad you used a wheelchair as well and had a fun Universal outing with it. I'll admit getting over the mental aspect of it is difficult but once you realize how much more fun some outings can be makes it easier to accept. I was just talking with a friend earlier about the benefits of motorized scooters. I'm actually considering getting an electric wheel put on my bicycle. I took my mother on a senior event the other day and way overestimated my capabilities. It was a huge reality check.

I actually wore compression leggings ( couldn't stand pressure on my feet ) for several years and found them to be very helpful until they started causing burning to my skin so I had to stop wearing them. I would think open toes should not alter the effectiveness of your compression hose.

After fighting with my pride I broke down and used a wheelchair for the first time when I went to Disneyland with my family last spring. As much as I wanted to deny it there was really no way I could have gotten by without one. It was the best decision ever in spite of feeling very self conscious about it. Unfortunately one just has to suck it up sometimes to make for a more tolerable and more enjoyable I might add situation.

How interesting. I was just at Mayo a few weeks ago and have already started to receive itemized statements of charges and sure enough one of the billing codes they used in addition to others was 427.89. Actually in looking back over my statement from 6 months ago they used that billing code back then as well. It's nice to see POTS instead of unspecified cardiac condition.

That's fantastic. What wonderful news ! Thanks for sharing.

gjensen makes a good point. We all respond so differently to the same medication. I have been on and off Gabapentin since 2006 and have never noticed any cognitive difficulties associated with my taking it. A bit of tiredness perhaps when making dosage increases has been the only issue I noticed. It has helped so much with my neuropathic pain. I can't imagine getting by without it. I used to suffer horribly from cognitive difficulties until I was diagnosed with mast cell activation disorder and prescribed a cocktail of medication. Wow. What a difference it has made in terms of improving my brain function. I still have a number of other issues certainly but to regain better brain function has been huge. So again as gjensen has pointed out there can be any number of things that can cause cognitive difficulties. I'm glad you're doing better p8d. Maybe Gabapentin is not the best med for you. Thankfully there are other options.

I'm so happy for you Rich that you were finally able to get IVIG approval. I so hope it turns things around for you and gives you your life back ! I'm sorry the infusions are so difficult though. Hopefully they will become more tolerable over time and you will reap huge improvements. Janet

Hello leea 190. I'm sorry you have been so ill. Cold symptoms can get very tiresome. Infections can also definitely have a negative impact on PoTS symptoms. I second Katie's suggestion of seeing an Immunologist. Having that many viral infections is a bit out of the ordinary and should be evaluated by a specialist. I can relate to feeling blown off at times by my past primary care doc as well. I hope your new Electrophysiologist is helpful.

How wonderful and inspiring. You must be so proud of your daughter. Thanks for sharing !

That's great that abdominal compression helped you so much !

How interesting ! Thanks for the link Rachel. Makes me wonder even more if the taking of Mestinon and the improvement in my voice were connected and not just a coincidence. I guess I was actually diagnosed with muscle tension dysphonia and not spasmodic dysphonia. Out of curiosity I had to go back in my records and look. It's amazing all of the different issues Mestinon can potentially help. I hope you're feeling better Susan.

I'm sorry you are feeling so awful. That's too bad you're going to wait for test results. Hopefully some useful information will be forthcoming.

You're welcome corina.

You're welcome Katie. Exciting to think what new discoveries in terms of treatment and possible cures ( we can be optimistic right ) are just around the corner !

It's definitely worth trying otherwise you will always be left wondering whether or not you had exhausted all possible avenues of treatment.