Psalm 23

http://www.wjgnet.com/2218-6204/full/v3/i1/1.htm You may have already posted this one somewhere Katie but in case not this is another current and interesting paper. We are very fortunate that the past few years have brought new mast cell information to the fore front. There are definitely a lot of informative papers available now that were not there several years back.

Hello Nymph, For myself I feel and appear to be very distended in my upper abdomen. So much so that my lungs feel compressed at times and I feel extremely short of breath. I wear a Gabriella abdominal binder most all of the time. I don't know what I would do without it as it is incredibly helpful. I still get potsy and very sob at times but not as bad as I did without the binder. Before I really understood what was going on I would apply pressure with my hands/arms to my upper abdomen when I was upright which was comforting but I didn't know why applying manual pressure helped so much until some time later. I also found compression hose to be extremely helpful but had to stop wearing them as they aggravated my burning skin problem. A search for abdominal compression/binders should bring up a lot of past posts on this topic as it's been brought up in the past. In fact it was at a members recommendation quite a while back that I decided to try an abdominal binder and have been very grateful to her ever since. Janet

Thanks for sharing this paper with everyone Katie. I had actually read it last year and found it to be very interesting. It was nice to have it brought to remembrance though and reread it as it contains a lot of very interesting information. Janet

Wow. What an amazing discovery. I'm sure there will be much more research to follow. Thanks for sharing Katie.

How interesting. It's amazing how many medications designed to address one type of symptom or condition are later found to be of benefit for something entirely different. Thanks for posting the links Katie. Janet

How wonderful to hear that Tyler is making progress. What great news ! I hope we hear of continued improvement. Thanks for sharing Rachel.

Yes. It is interesting. Thanks for your efforts in trying to provide the links.

Katie I haven't read any articles specifically mentioning valium per se but benzodiazepines in general seem to be commonly prescribed for mcas/mcad because of the calming effect they afford. Feelings of stress ( I strongly dislike using the word anxiety ) in addition to cold, heat, specific foods etc. etc. is considered to be a mast cell degranulation trigger. I have heard some go so far as to call benzos mast cell stabilizers which I don't believe they officially are. I have wondered at times if something like that would help me but my one and only experience with a benzo which was given as a twilight med did not go well. I think quite frankly the doc overdosed me on the stuff so it may not have been a complete medication intolerance issue. When I feel stressed ( I seem to have developed a low sensory overload threshold ) which is often I can usually hide it pretty well except for the tell tale flushing ( face, neck and splashed across my chest ) which is reflective of mast cell degranulation. Of course any of the other lovely mcas symptoms can result as well so that's where taking a calming medication is supposed to help. I have noticed since starting on mast cell meds that my degranulation threshold is somewhat higher.

Hi Katie, Thank you for posting the very interesting articles. I had heard of Doxepin being used as a mast cell treatment but not Elevil. I was prescribed Elevil a number of years ago for fibro. I was only on 10 mg HS but it really helped a lot with sleep and pain. Interestingly though after 2 years of being on it because of its interference with sweating I was told to discontinue it as it would make my pots symptoms worse. That was before I ended up with a mast cell activation disorder diagnosis added on. I wonder how it's viewed for one with neuropathic pots and mcad. I will have to ask my doc. I'm curious. I'm so sorry to hear about your hypercoagulability issue as well as your daily migraines. How terrible your pain must be. I hope the rest of your lab abnormalities are figured out soon and the aspirin therapy works out. That would be so much nicer to be able to take aspirin instead of another type of blood thinner especially since as you pointed out aspirin is one of the potential mast cell medications. For myself I have found that aspirin helps with my flushing. Let us know how you do with it. I'm sure your doc has you starting out on incremental doses just in case of a reaction. Interesting the way some mast cell people do well with it and some are allergic to it. I pray things improve for you soon Katie. Janet

That's really good news gjensen. I hope you're on the road to better days ! The timing is interesting. I do understand the delicate balance between optimism and avoidance of disappointment though.

Sarah, I know I need to stop second guessing myself. It's certainly not very productive. At this point I am satisfied just to wait it out as I want a face to face conversation and not messaging. I have already had to do the messaging bit back and forth this week over other medication issues which I truly appreciate but it's not the same thing as having an actual appointment. Thanks for the suggestion though. I hope you're feeling better today. Chaos, Thanks for the SCIG information. That would be great if you could get off of the antivirals. Congratulations on your sons upcoming wedding. How exciting ! It does seem wise to hold off on starting the SCIG until after the wedding. You certainly wouldn't want to risk missing out on anything because of side effects. Waiting until July wouldn't make a difference I should think.

As always rooting for you Sarah and praying this medication will turn things around for you. So glad to hear you are already realizing some benefit. Lets be optimistic the docs can figure out how to balance out all of your medications. Many hugs, Janet

I tried Nuvagil and Provagil and had bad experiences with both of them. The Nuvagil was given to me for CFS as a sample drug many years ago by my then Rheumatologist. One pill gave me three days of no sleep, severe flu like symptoms and a crash that lasted weeks. Last year I decided to give Provigil a try ( pretty ridiculous I know ). It was prescribed for OSA with persistent symptoms despite APAP use by my Pulmonologist. Well the side effects for me were not as severe as with the Nuvagil but they were still very significant. Recently on one of the mast cell forums I came across a discussion on Provogil. I found it to be quite interesting as this drug was recognized as a pro histamine drug and a potential hazard to those with mast cell issues. Left me wondering if that was why I had such a severe reaction to it. Anyway I would just proceed cautiously if considering this medication. Janet

Hi Chaos, That's great! I'm so glad you will be able to give it a try. Hearing you mention SCIG makes me wonder if that was the subq treatment option that was mentioned to me in my appoinment. I would love to hear about your response from it. Please keep us posted. How convenient to be able to self administer it at home. I hope you realize vast improvement from it. You certainly are in need of and deserving of it so there should be no guilt on your side. I had actually wondered a while back if your CVID diagnosis qualified you for IVIG. How was it that SCIG was decided upon instead of IVIG ? Hi rockenmamaof5, Yes. That old CYA bit can be so frustrating and some docs really buy into it. I'm sorry about your presumptive MG diagnosis but glad it allows for IVIG approval. I hope you get something definitive from the muscle biopsy and single nerve fiber emg. Also I hope you get something local worked out for your IVIG. Good thing you have a PCP on your side. There are definitely a lot of conflicts out there regarding what is in the best interest of the patient. It's unfortunately slanted in the negative direction. Thanks for your responses and best of wishes to both of you, Janet

Thank you so much for your response rockenmamaof5. I'm so glad you have benefited at least to a degree from receiving IVIG. How were you able to get it approved ? I do know of a number of people who have received IVIG off label for various diagnoses other than the approved ones and have benefited greatly from it. One has lupus. Trying to get clear diagnoses can be such a long frustrating journey. I have been down and continue down that road as more abnormalities keep turning up. I'm sorry things are bad for you right now. I pray this 4th dose helps a lot ! Thanks for the support. I really hope for an opportunity to try IVIG but we'll see. Hugs back, Janet

ptalaura that's very interesting that Mestinon got you your voice back as that was one of the PoTS meds I started taking in 2011. I wonder if Mestinon was also responsible for the normalization of my voice. I only gave it credit for reducing my PoTS symptoms.

Hello and welcome !

Hi Nicole, Yes. I will definitely give an update and provide that information when I have it. I'm afraid we will have to wait a while though. I'm glad you were able to have biopsies done and will be getting more information soon. The more information the better. Janet

It does all sound very tricky. Having it done in the hospital would apparently be my only option anyway as that is the only place my hematologist orders it be administered. He does have an infusion center but not for IVIG. His practice is actually part of a cancer care center which is an offshoot of the hospital across the street. Even If the IVIG were to be administered in the hospital I wonder still if I would incur the 20 % copay. It sounds like maybe not ? My Neuro did not discuss plasma exchange as a treatment option so I'm not sure about that one. There were a couple of other treatment options brought up but I am embarrassed to say that I did not write them down and forgot what they were. So many things were discussed at that appointment that I was overwhelmed. I did actually go through the patient portal and try to find out what the other medications were but didn't get that question answered so at this point I am just looking forward to my next appointment which won't be until September. Thank you, Janet

That's really interesting ! I had no idea. I assumed the IVIG expense would be covered by the medigap policy not the part D drug plan of which I have an excellent Signa plan with gap coverage. I actually called my drug plan about IVIG a while back and you're right they had no idea what I was talking about so I assumed it fell under medicare and medigap. I have grown accustomed to having to pay out my 20% ( actually 30% when I go to Mayo ) but I have been fortunate and have not incurred any really huge bills so far. IVIG aside though it is a bit scary to have so much exposure which was another reason to once again pursue the illusive medigap coverage because who knows what the future holds in terms of medical expenses. My big mistake was in not acquiring a medigap policy the first six months of being on Medicare. That first six months is a guaranteed issue time. Maybe bringing my mistake to light will help others avoid my unfortunate situation. Although now we know these plans have big flaws built in anyway. How frustrating. Thanks so much for the information. I think I need to talk with my Neurologist about how we would even get this approved and my Hematologist again about billing information. He does his IVIG infusions in the hospital so I suppose that makes it even more costly. Of course the real cost factor though is the immunoglobulin itself. I'm going to call Signa again as well. Looks like I need to try and get more information. Thanks again, Janet

I am also sorry you're having to deal with this Katie. All of these issues can get so complicated and overwhelming. I hope your doctor can come up with a successful treatment plan for you.

Thank you so much for your response RichGotsPots. I really appreciate the information. After posting this topic I spent a number of hours on the phone with different insurance companies and brokers in an attempt to obtain a medigap policy as the IVIG copay cost is beyond me, assuming I could even get approval which seems slim at best. Everyone I talked with had something different to say but in the end regardless of which state I lived in preexisting conditions were factored in so I was turned down flat. I was told my next opportunity to sign up for a guaranteed issue medigap policy would be in 10 years. It seems so unfair to me that all the rest of the population have benefited from Obamacare in terms of preexisting conditions no longer being an issue while the disabled population still have that issue to deal with. Anyway at this point I have resigned myself to having to wait until my next appointment and discuss what other possible treatment options are available to me. I'm so sorry you have been denied an opportunity to try IVIG. I know it's hard not to wonder whether life would be different with this therapy. I hope your persistence pays off and you eventually get it approved. I would love to hear that you were able to get it approved and had great success with it. Thanks again, Janet

My B/P also hit very high numbers ( 170/110 ) during my ttt and I had very high NE levels ( 2900 ) during catacholamine testing. Rather than a diagnosis of hyperpots as I thought those findings would indicate I was diagnosed with neuropathic pots with a hyperadrenergic component. I think if one has a sudomotor abnormality ( reduction in sweating ) on testing then a neuropathic pots diagnosis is given in spite of what would appear to be hyperpots. I was also told the elevated B/P and NE levels were a compensatory mechanism.

Hello and welcome !

Hello SusanB, I'm so sorry you are in the hospital. Not a fun place to be. I was diagnosed with Dysphonia back in 2011 at Mayo. I had suffered with years of hoarseness, coughing and throat irritation. The dysphonia was thought to most likely be the result of a severe and prolonged case of viral laryngitis which I had endured 8 years earlier. No one mentioned any connection between the dysphonia and dysautonomia. Now all these years later that issue has improved so significantly I almost forgot I had been diagnosed with it. The main difference between pre 2011 and post 2011 was starting PoTS and mast cell treatment so I'm not sure if that helped in some way. The thought has never crossed my mind before. Back in 2011 the ENT doc at Mayo recommended some kind of voice therapy which I'm afraid I did not follow through with once I returned home. I hope you feel better soon. Janet