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Psalm 23

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Everything posted by Psalm 23

  1. Sunshinegirl I take clonidine and pyridostigmine for tachycardia. For the few who can tolerate it pyridostigmine is very helpful in reducing heart rate and other PoTS symptoms. And of course if you can tolerate it salt and fluid helps especially if IV fluids are not an option. Sounds like you better see your doctor though to be evaluated. Katie I'm so sorry about your horse being ill. I hope she's doing better. I'm a horse chick as well. I hope your hematologist can figure out what is going on with you. I'm like you in that when abnormalities are detected it means moving in the direction of answers. I hope you've been resting today and letting others care for your horse.
  2. Hi Sarah, Thank you my dear sweet friend. You're always in my thought as well. I did find out from calling my Hematologist office the other day that they do not offer IVIG at their infusion center but through a home health agency. My actual appointment with the Hematologist is in two weeks at which time I will find out if he is agreeable to following Dr. G.s orders. I would be really surprised if he was not agreeable.Thanks to Katie encouraging me to pursue trying to obtain a medigap policy I have come to realize that I can still get Medigap coverage even though I am well beyond the six month mark. I'm still in the process of calling a number of health insurance companies and comparing offered plans and prices. It turns out the state really has no involvement in any of this. It's all about what the insurance companies are willing to do. Some of them turned me down, some of them offer only one policy and there is a huge range of prices. The plan I am most likely going with won't cover any expenses related to my preexisting conditions for the first three months so since there is not an urgency in receiving treatment I will wait until my coverage kicks in. Thanks again Sarah. I'm here for you as well. Hi Katie, I am so thankful to you for encouraging me to pursue a medigap policy. I really thought all hope was gone on that one. Back in 2011 at Mayo's suggestion I tried to secure a medigap policy but was turned down flat by everyone. Now however one of the companies who turned me down in 2011 is offering me a policy. Apparently the way it works is once one exceeds the 6 month time frame even if you live in CA the insurance companies can decide if they want to offer a policy or not. Based on all of the phone calls I have made in the past several days there would appear to be no control what so ever in pricing or policies offered or not offered. I will be making a decision in the next few days. I have really been taking a big chance by not having any supplemental coverage. Thank you so much, Janet
  3. Aspirin doesn't seem to be contraindicated for one with PoTS as I have PoTS and was prescribed Aspirin 325mg bid as a MCAD therapy which I have as well. For those with a mast cell disorder Aspirin can be very helpful or very harmful as some have a degranulation reaction to it. Do check with your pharmacist though and make sure it is compatible with your other medications. Janet
  4. How wonderful to be blessed with such a special new furry friend. He sounds lovely. I'm so happy for you. Janet
  5. Hello Sunshinegirl, I'm sorry you are having to deal with such scary symptoms. Katie is correct in that beta blockers are generally contraindicated for those with mast cell issues. While I did not have an angioedema response to the use of beta blockers I did experience such severe episodes of chest pain I felt as if I was having a heart attack. Since we have mast cells everywhere any number of symptoms can be experienced by one with a mast cell disorder. Don't ever give up on believing in yourself. It took me many years to get the correct diagnoses and treatment. Janet
  6. Hello Dotty, I can certainly relate to both difficulty standing in lines and light sensitivity. Like Katie I try to shop during the less busy hours. I shift around a lot probably looking as if I need to use the restroom all the time but it seems to help. When I could tolerate them compression hose helped a lot. For light sensitivity I wear sunglasses sometimes indoors depending upon how bad of a day I am having and always outdoors. When I walk outside I wear a hat with a visor. Yes. These issues are definitely very frustrating. Janet
  7. Sunshinegirl, Thank you again for encouraging me to pursue the route of a late Medigap policy. After talking about this with my hubby and deciding it was worth fighting to get even though my Internist would no longer be available to attest to my incapacitated mental state I found Katie's link. So maybe this is my answer. I feel rather foolish for not being aware of this possible option in the first place. Thanks again, Janet
  8. I'm sorry you were unable to sleep last night Katie but thank you so much for your research. I wonder if this is something new as I don't remember seeing this opportunity before. I have been talking to my hubby this morning about just this subject and had decided I would try and pursue the route of a late in the game Medigap policy but realized I would be at a disadvantage because my Internist of 33 years who I was seeing when I fell so ill and filled out my disability paperwork has retired and is long gone. Hopefully that wont effect my request. I'm 55 by the way. Lol. Thank you from the bottom of my heart !! Yes. You are the best. I will let you know what happens. Janet
  9. Sunshinegirl, I just read your topic of this morning and appreciate all the information you made available to others who are seeking Medicaid. I will have to keep it in consideration for possible use if necessary.
  10. Hi Sunshinegirl, Thank you so much for your offer of assistance. I am truly touched. I would never qualify for Medicaid. As embarrassing as it is for me to have Medicare at my age I am very thankful to have it in spite of having large co-pays. I live in California. I'm quite sure there are no other benefits I would qualify for. I will make some inquiries this week just to be sure. From what I understand the government is pretty hard nosed about the 6 month rule. While it would have been nice if I were made more aware of that time constraint in the beginning, I should have actually read more carefully the material that was mailed to me. I do definitely keep all of my receipts as I realize every little bit helps but thanks for the tips on capturing all of them. Hi Katie, Thank you for yet another valuable link to investigate. I think making an appeal to one of the drug companies is going to be my best option for increased affordability. I had a lovely Easter Day with my family. I hope you did as well. Hi Clb75, Thank you for the information. At this point I don't even know what brand my Neuro would be ordering. When he brought the subject up it was so unexpected that I didn't ask many questions. I basically told him I would have to think about it. I did call my Hematologists office to find out how they managed IVIG and was told that they used a home health care agency. They don't give it at their infusion center for some reason. I will find out when I see him in a few weeks whether he will even be agreeable to following my Neuros orders. Hopefully that wont be an issue. I so took for granted all the years of what I came to realize was amazing health insurance. I'm sorry you and your family have suffered as well with health insurance issues. It's certainly been a learning experience for me. I made the mistake year before last of selecting the wrong part D drug plan. It seemed the right choice at the time until I was prescribed Cromolyn which very quickly put me in the doughnut hole. For this year I pay a higher monthly premium for a Signa plan but have gap coverage which is amazing. I was actually on a senior HMO for a couple of years which was great but when my issues worsened and I needed to go back to Mayo I had to switch back to Medicare to be seen there. Yes. This whole insurance thing can be so much more complicated for those of us with more unusual conditions. Many thanks to everyone, Janet
  11. Hi Katie, You are such a sweet heart. Thank you so much for the privigen assistance link. I'm definitely going to investigate it and see if I would qualify. Hi Sunshinegirl, Thank you for sharing. I'm so sorry your son has to deal with crohns disease and at such a young age and for you having to deal with debilitating GI issues. I hear you on that one. I'm glad your son is doing better and you if you adhere to your diet. Your research into the inner workings of the immune system really paid off. What we consume does have such a huge impact on our immune systems and having an awareness of what triggers an inflammatory response or any kind of negative response is invaluable. Like you I have developed an awareness over time to what I am best able to tolerate in terms of diet. It's so individualized and subject to change at any moment. I went through a very strict elimination diet last year and learned a lot. In regards to disability I am actually already on Social Security Disability. I had to leave my nursing job back in 2005 and was awarded disability benefits within three months of applying. After 24 months of being on disability I was automatically put on Medicare and removed from the Cobra plan my family was on. I carried the health insurance for everyone through my employer so when I had to leave my job health insurance became an issue. In any event my big mistake was in not seeking out gap coverage which you only have 6 months to apply for once you are on Medicare. I was so horrified at the time that I had ended up on Medicare that I never read any of the paperwork until it was too late. I wont get another opportunity to apply for secondary coverage until age 65 ( 10 years to go ). So I have gotten used to having to pay out more money than I would like. The cost of IVIG would definitely be pushing it to the limit though. I will have to make some inquires and find out if there are some other benefits I am unaware of. Thank you for bringing this to my attention. Thank you both so much, Janet
  12. Hi sideofsalt, Thank you so much for your well wishes ! I'm going to have to ask more questions and most important pray about it. Hi Katie, Thank you for the information, I will have to check it out. I have pretty much resigned myself to having to pay out of pocket for the IVIG if I elect to go that route. Aside from the expense of it I am somewhat concerned about the albeit slight but existent risk of kidney failure. Because of the loss of one of my kidneys to a large renal tumor a number of years ago I am very protective of my remaining kidney which I had some issues with in 2011 but is presently normal. I guess that was my reason for reaching out to hear about others experience with this therapy. If I could be guaranteed that it would make an appreciable difference with no risk I would jump on it but of course that's a non reality. Lol. Thank you for the well wishes ! Thank you both, Janet
  13. Hello everyone. Thank you all so much for your responses. I really appreciate it. Sunshinegirl, I have a very long and complicated health history which would take pages to go over. I wouldn't even know where to start. My profile gives a bit more information about my journey. Basically my Neuros objective at this point is to address autoimmunity issues which could be the driving force behind some of my symptoms. Chaos, You're right. It is interesting that Dr. G. ( I'm sure we see the same doc ) suggested IVIG. I was stunned. I have never mentioned it before as I didn't think I had any diagnoses that would allow for it. When I first saw Dr. G. I had in addition to many other things a diagnosis of SEID ( ME/CFS ). I had been given that diagnosis by a local Neurologist and a local Rheumatologist. Then I was referred to UCLA and re diagnosed with it by another Rheumatologist and then several years later was referred to USC to see another Neurologist and was again diagnosed with it. When I ask Dr. G. about this diagnosis he just says we don't know much about it. He also says he's not removing it from my list. He has added on so many other diagnoses though that now I wonder if I do actually have it except that I still have debilitating fatigue, PEM, and unrefreshing sleep in spite of APAP use. In any event it was not factored in with his suggestion of IVIG. Based on my family history, my history, lab work etc. he is suspecting an underlying autoimmune condition. I have seen that IVIG is given off label for ME/CFS as well as a number of other conditions. I hope your appointment goes well. I hope you are given an opportunity to try IVIG. I will let you know where this all goes. Clb75, Thank you for sharing. I'm so sorry. You have very serious things to deal with. I'm so glad IVIG helps you. Yes. Insurance is a sticky business. I'm not sure yet how this will play out. I have original Medicare and no secondary coverage so I expect I will have to pay 20 % and I'm not really sure how authorization is addressed with Medicare. I have questions for the Hematologist who would be doing the billing. Thank you for the advice on side effect preventative measures. Much appreciated. I have heard that headaches are pretty common. gjensen, Thank you for your thoughts and encouragement. Katie, Yes. In addition to those abnormalities my Neuro is adding everything together and coming out with the thought that an underlying autoimmune condition may be behind some of my symptoms. It's all so nonspecific though which was why I was so surprised at the IVIG suggestion. The eosiniphils will be rechecked in two weeks and the n-type calcium channel antibodies will be rechecked in September. I'm really curious what the results will be this time. Many thanks to everyone for responding. I'm so sorry you all have to be dealing with such life altering conditions as well. Janet
  14. Well I had an appointment with my PoTS Neuro a few weeks back and in addition to many other things discussed was very surprised when the subject of having IVIG therapy was brought up. You can see from my signature what my various diagnoses are. I wonder have any of you with diagnoses like mine had IVIG and have you realized any benefit from it ? For me having it done locally ( home health agency ) would require that my Hematologist ( who I see in three weeks ) be agreeable to signing orders written by my Neurologist because I live in CA and my Neuro is in AZ. I have much to think about. As you all know this is a costly procedure and not without risk and sometimes without any benefit. Thank you for your responses, Janet
  15. You're welcome Katie. I'm basically just sharing what I have read about on the various mast cell forums. After reading about the bucket theory it totally made sense to me. I completely agree with you in that consuming a banana is much healthier than a slice of bread. Food choices have to be thoughtfully considered. Always making the healthier choice is paramount. It is unfortunate that so many healthy foods can trigger a mast cell reaction. Keeping a food diary is super helpful and eliminating as few as possible healthy foods.
  16. Hi Katie, I really wish I could say that I have noticed at least something of an improvement with both the Vitamin C ( which Dr. Afrin recommends but only as a slow release type and not to exceed 750mg daily ) and the Quercetin but the truth is I'm not sure if taking either has made any difference. I guess my thinking in taking all of these supplements is that I am covering all the bases. Lately though I have been wondering if it is worth the expense. In regards to the mast cell activation symptoms the real turning point in terms of symptom improvement for me was when I started taking an H1, H2 and the Cromolyn. Identifying and avoiding food triggers has also made a big difference. I was started a few weeks back on Singulair which my Neuro said he has not had much success with but I could try it if I wanted. While it has not helped my shortness of breath issues which was what I really hoped to get relief from it has helped my skin sensitivity ( burning and stinging ). Of all the supplements I am on the only one I truly noticed a difference with is the Alpha Lipoic Acid. If I forget to take it my pain level is higher. Hi gjensen, Have you ever heard of the bucket theory ? Sometimes it's difficult to figure out what foods one reacts to because of what appears to be an inconsistency in reacting. The bucket theory is about putting too many reactive foods in your bucket and overflowing. It's a matter of exceeding your tolerance level. For example there are a number of foods I react to but with some of them as long as I keep the amount low and don't consume too many of them in a day I am able to tolerate them.
  17. Hello sideofsalt, No. None of those supplements you listed are taken to address my mast cell issues and CoQ10 does not have an effect on my blood pressure. The Quercetin and slow release Vitamin C are meant to address my mast cell issues. Both are thought to be stabilizers. Since my last post I have been back to see my PoTS Neuro who is also managing my mast cell activation disorder. As you can see in my signature other medications were added. Ironically Ketotifen will also be added. I have a prescription for it which I still have to mail to a Canadian pharmacy. I am a bit apprehensive about that one as it has an enormous number of potential side effects. It also has the potential to be very helpful as it is an H1 with mast cell stabilizing qualities so I will at least give it a try. As much as I would like to steer clear of more medications I am also desirous of more symptom relief and supplements alone just don't do it. Of course another huge consideration in managing mast cell degranulation issues is in identifying and avoiding triggers. The Canadian Mastocytosis Society has an abundance of useful information pertaining to diet and triggers. Check it out. Janet
  18. Hello Malzwit and welcome to the forum. I am a horse chic as well. I hope you find something helpful for your condition and feel better. There really are so many options to explore.
  19. Hello sideofsalt. In regards to mast cell stabilizers I am on Cromolyn sodium oral solution. It along with other MCAD medications was prescribed to me by my PoTS Neurologist so yes it is commonly prescribed to PoTS patients who present with MCAD symptoms. Ketotifen Is not available for purchase in the States so that one is not a consideration for some. Although with a prescription it can be ordered from some Canadian pharmacies.There are a number of papers written by the few MCAD experts which address symptom management and medication. Basic therapy usually consists of an H1 and H2 histamine blocker and a mast cell stabilizer. Then other medications are added depending on the patients symptoms. For myself I was started on Allegra 180mg daily, Pepsid 40mg HS and Cromolyn 200mg qid which was later changed to Allegra 180mg bid, Zyrtec 10mg daily, Pedsid 40mg HS, Cromolyn 300mg qid and aspirin 325mg daily ( for flushing ). How have I benefited from all of this you wonder. Significant improvement in the areas of GI symptoms, OI symptoms, brain fog, neuropathic pain and flushing. I also no longer have left sided chest pain. I actually have an appointment at Mayo tomorrow and one of the topics of conversation will be Singulair again.That one will probably be added to my cocktail next as like you I have some breathing issues. A really good place for MCAD medication feedback is on one of the mast cell forums. Several of the members on this forum are also on the mast cell index forum. Worth checking out. The Newsletter article corina provided a link for also has excellent information on it. Dr. Afrin actually has a fairly recently published MCAD paper. Best of wishes to you on your journey, Janet
  20. I am so sorry for your loss Bigskyfam. My heart breaks for you. I understand your pain as I lost my horse to colic a number of years ago. Losing our four legged family members is just devastating. I'm praying peace and comfort for you. Janet
  21. I was told to drink 2.5 - 3 liter of fluid per day and 9 grams of salt. I just drink water and small shots of concentrated sea salt water throughout the day. I seem to get enough electrolytes in my food. It works for me.
  22. Hi Psalm, I'm so glad you decided to try a low dose of the Mestinon again, are able to tolerate it and it is helpful. The tolerated dosage and frequency seems to be very individual. This whole medication thing really is trial and error. I went back and reread the old threads Katie had posted and was surprised at how few people tolerated and benefited from this medication. I guess I had forgotten. It's unfortunate that more people are not able to tolerate it as it can very helpful in alleviating some symptoms. It seems to be a favored medication by Mayo Neurologists. I don't use a stomach protector but I do have food in my stomach when I take my Mestinon. I will say that over time I have wondered if some of the effectiveness of this medication has worn off a bit in terms of how much more it helped fatigue in the beginning. That's fantastic that you have an upcoming appointment with a PoTS doc. I'm sure you will get some good direction. Going to a PoTS knowledgeable doc will make all the difference in the world. Best of wishes to you. Keep us posted. Janet
  23. Hello there and welcome to the forum. I'm so sorry you have had a bad experience with Mestinon especially since it was so helpful for you. I have been on 60 mg 3x daily since Nov. 2011 and like you have realized enormous benefits from it. Three times a day dosages seem to be the most common. Last year my PoTS Neuro considered an increase to 90mg 3x daily but in the end left the dosage as it was and added in MCAD medications instead. You might do a topic search for Mestinon as I know others have posted their experiences with this medication. I believe others had wondered whether the effectiveness of the medication had worn off over time and there were others that had side effect issues. If it were me I would let my body have a rest then restart the Mestinon gradually going back up to the 60mg 3x daily or whatever is tolerated and leave the dosage there if that was okay with my doctor of course. I guess I have been fortunate and not suffered any side effects with Mestinon but I have never gone beyond a 60mg 3x daily dosage. I hope you get this resolved soon and feel better. Janet
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