Rachel

Thanks so much for sharing this! Rachel

I just want to add that I had an epidural for my c-section. I was concerned about my blood pressure dropping due to the epidural, and I discussed this with my doctor and anesthesiologist well in advance. They allowed me to take my usual dose of midodrine before having the epidural. I don't know exactly what my blood pressure was during the time the epidural was in, but low blood pressure wasn't a problem for me at all.

With my first delivery I wanted to go as natural as possible. After laboring all night and all day, I was exhausted and desperately in need of sleep. I opted for the epidural, and my midwife also recommended pitocin because my labor wasn't progressing quickly enough. The epidural and pitocin were the best thing for me. I was able to get some much needed sleep, and because of the epidural I didn't feel the pain from the pitocin at all. I had heard that contractions with pitocin were rough, but I didn't feel them at all. With my second delivery we planned on inducing so that I could avoid going into labor at midnight and not getting any sleep. Instead I had to have a c-section because my little girl was 10 pounds! The need for a c-section was determined two days before we were going to induce, so it was a planned c-section, not a c-section after a long, hard labor. There are pros and cons both ways. With natural labor you have intense pain beforehand, with a c-section you have intense pain afterward. The pain levels are about the same in my experience. Having a c-section was less exhausting than labor, but having to stay in the hospital for 3-4 days made it really hard to sleep. You have nurses, doctors, cleaning ladies, and food service workers coming in all day long, and hospitals are noisy at night. I would have preferred to have a natural birth and then be able to go home the next day and get some good rest. The risks are greater with a c-section, so it is good to avoid that if possible. Although, there are times with the benefits outweigh the risks. That's just something you and your doctor have to decide together. The goal is a healthy baby and safe delivery for both mom and baby. For some people that means a natural childbirth, and for some that means a c-section. I hope that everything goes well for you and your baby. All the best, Rachel

Naomi, There were a few minor abnormalities in my lab work, but nothing that was diagnostic. From what I understand it is pretty rare to be able to be diagnosed based on lab work alone. Usually patients end up having a muscle biopsy. I have had a skin biopsy, but not the muscle biopsy. This is the lab work I had: Mitochondrial Genome screening lactic acid/lactate CK Creatine Kinase Comp Metabolic Panel CBC+ auto diff Methylmalonic acid Ammonia BLD Organic Acid Quan UR Acylcarnitine QT PL Acylcarnitine QT UR Lymphocye CoQ10 TSH BLD Cortisol BLD Ferritin BLD Iron+ TIBC Vitamin 25 hydroxy Amino acid quant BLD

LMG, The supplements and vitamins that mito patients take are often referred to as "mito cocktails." The specific supplements and dosages vary from one patient to another. Here's a page on Mito Action that explains what some of the supplements commonly found in a mito cocktail are for: http://www.mitoactio.../mito-cocktail. The supplements in my mito cocktail are CoQ10, alpha-lipoic acid, B2, and Carnitor. I never noticed a difference when I added in the B2, but with the other three I definitely noticed a small increase in energy and strength. There haven't been any huge improvements; I'm still mostly homebound. I still have days when I can't think clearly, have my muscles give out on me, or can't move due to muscle pain. But it's better than it was before the mito cocktail! Angelloz, I'm so sorry that Mayo Clinic turned you down. That must be really disappointing and frustrating. Do you have a doctor who could refer you? I wonder if that would carry more weight? Or maybe a place like Vanderbilt would be beneficial for you.

That's wonderful! I'm so glad for you! I'm sorry that you need it, but what a relief to be approved. Rachel

As a reminder to everyone, forum posts dealing with a bad experience with a doctor or at a hospital must be brief and general in nature. Defaming doctors and hospitals on the forum opens DINET up to liability. In order to protect our members and the future of DINET, we cannot allow disparaging remarks to be made when a particular doctor or hospital is named. Thanks, everyone, for understanding, and for helping to keep the DINET forum as a resource for us for years to come! From the forum rules: Doctors and Hospitals You agree to refrain from making disparaging remarks about hospitals or medical professionals on this forum and to refrain from naming doctors or hospitals when elaborating on negative experiences. Clarifications: It is fine to make a general statement, such as "I had a negative experience with Dr. ____ ," however, per forum rules, statements naming a particular doctor or hospital cannot be defamatory in nature. Defamatory: "1. Harmful and often (but not necessarily) untrue; tending to discredit or malign." You may elaborate on negative doctor or hospital visits as long as the particular doctor or hospital is not named, and therefore not defamed.

I'm sorry you didn't have a good experience. It's frustrating when you think you've found a place or a doctor who can help you, but then have a bad experience. I hope you'll be able to find the right doctor soon. I usually end up lying down on the floor in waiting rooms. Unfortunately the wait time is sometimes long at doctor's offices. One time I even went back to my hotel and took a nap, and then came back an hour later! I've learned to come prepared with snacks, water, and sometimes even a blanket and pillow.

From what I understand, short stature is common with mito, but not everyone with mito is short. I'm 5' 10" and Dr. Cohen never mentioned my height as a reason to not pursue mito testing. I have an appointment at Mayo in a couple of months. I'll let you know how it goes! I've heard so many mixed reviews, I'm not really sure what to expect. Hopefully they'll be able to help me, but if not I can always take my records and go back to Cleveland again. Cleveland is a 2 or 3 day drive for me now, so I'm really hoping that I can get the help I need here in Minnesota!

Thanks so much for that information, ACsMom! I'll have to look into this company and see if they are able to provide services for Medicare patients in my area.

Thanks for sharing about your time so far at Vanderbilt! I'm so glad you are having a good experience. I hope that your time there will be worthwhile and will provide some answers and better direction for treatment. Rachel

ACsMom, That's great that an agency an hour and a half away is willing to help your daughter! I called agencies half an hour away from us, but they don't come this far. Does your daughter by any chance have Medicare for insurance? Supplies shipped to my home would work perfectly well. My husband can start IVs, so we don't even need a nurse. We only need the supplies! It's just seems to be impossible right now to get them.

Naomi, what happened with your testing that you hit a dead end? Were you able to do any biopsies or just the blood work? I hope that one day you will be able to find a cause for your dysautonomia.

Naomi, Dr. Grubb first mentioned mito to me back in 2007. He believes that I have a mitochondrial disease based on my symptoms, severity, muscle problems, progression of my illness, and lack of response to treatment. He referred me to Dr. Cohen, who also believes that I have a mitochondrial disease. I was Dr. Cohen's patient for a couple of years, but I wasn't able to finish the testing and diagnosis process with him. He ended up leaving the Cleveland Clinic at the end of 2010. Then I moved in 2011 and again in 2012. It has been hard to follow through with further testing since I keep switching states! Now that I'm settled in one place for a while I want to finish pursuing the mito testing/diagnosis. Mayo Clinic is so close, but I've heard that they are better with testing/treating mito in children than testing/treating mito in adults. I might still go there and see what I can find out. Meanwhile, I am still being treated for mitochondrial disease by Dr. Grubb. He and Dr. Cohen put me on a mito cocktail because they are pretty sure that I have a mitochondrial disease. The mito cocktail has been one of the most helpful treatments for me. It isn't absolutely necessary that I get a mito diagnosis. Even if I do, there likely wouldn't be any different treatment. But after all these years, I'd just really like to know the name of this beast, you know?! Plus, it could provide some very helpful information for my children should they have mito too.

I'm so glad you were able to see an OB today! That's great that they made an appointment for you immediately. I hope that this pregnancy will go better for you since you have a POTS diagnosis and can take the medications you need during pregnancy. All the best, Rachel

Bananas, I checked Mito Action, and they do have a forum, but no one is very active on it. A lot of the posts are a year old!

I'm glad it is over! I can understand your relief! I hope that you will soon receive news of a favorable decision.

Congratulations! I hope this is a happy surprise for you. Sudden medication changes can be tough. I really feel for you! I was on different medications during pregnancy, so don't know from experience about the safety of any of those meds during pregnancy. As Corina and Katherine said, a high risk OB is the best one to talk to about this. Hopefully your EP will be able to help you too.

I am considering going to the Mayo Clinic here in Minnesota to finish my testing for Mitochondrial Disease. Has anyone else been to Mayo in Rochester for mito? What was your experience like? Would you recommend Mayo for adult mito testing? I would greatly appreciate stories of both good and bad experiences. If you had a bad experience that you are comfortable sharing, please send me a PM. I'm weighing the pros and cons of doing testing at a hospital nearby vs. travelling to a place like the Cleveland Clinic. Thanks so much! Rachel

Thanks for the feedback, everyone! I appreciate you taking the time to help me out! Getting IV fluids with Medicare is so tricky. I still haven't figured out a solution, so I'm continuing to go to the ER. I don't like doing that on a regular basis because it costs Medicare twice as much as in-home IV fluids, plus it gives extra work to nurses in the emergency room for something that isn't a life threatening emergency. My fluids were previously paid for by Medicare part A, which covers home health costs. Medicare part A is the same in all 50 states. Medicaid changes from state to state, but Medicare is the same, so fluids should still be available in home. I called my old home health agency from Louisville to ask about how to get in-home fluids with Medicare. From what I understand, Medicare won't reimburse a pharmacy for the fluids and IV supplies, but they will reimburse a home health agency for them. So the home health agency has to buy the supplies from the pharmacy, and then home health bills Medicare. It makes for extra work for the home health agency, but that's how it is supposed to be done. It's a process that isn't well understood here in small town MN, I guess. I'm the only patient around who needs this type of care, so it's not something the home health agencies are used to. There are only two home health agencies that provide services here, and one of them doesn't do peripheral IVs at all. So I only have one home health option. It's a town of 2,000 people, so we're pretty limited! We have a fabulous medical center and hospital for such a small town, so I'm very blessed in that way. The medical center is connected to the hospital, so my doctor is often able to come see me when I'm in for fluids. If anyone ever finds another way to get IV fluids with Medicare, please let me know!

I'm sorry to hear that Simon has died. That's really sad. To my knowledge, he wasn't a member here on the DINET forum. I think he was involved in other dysautonomia groups.

Thanks for the reply, Amy. Do you have Medicare for insurance or something else? It seems to be Medicare specifically that the pharmacies and home health billing people don't understand. They said that Medicare would pay for the IV supplies, but not the saline or a pump. Although I know that these were covered for me when I lived in Louisville. It just has to be billed properly. It's frustrating because I'm just a patient. I know that Medicare has paid for this for me in the past, but I don't write the billing codes or anything like that. I can't actually show the agencies how to bill Medicare and get coverage. My husband can start IVs for me, so even if my home health nurse can't come, if I just have the supplies he could get an IV started for me. The hospital isn't even a mile away from our house, so I'm very thankful for the short trip. It would just be very beneficial if I could stay indoors, especially in the summer when it is 90 degrees out. It takes me 4-5 days to recover from brief exposure to heat, which pretty much cancels out the benefit of the IVs.

Does anyone have Medicare, live in a small town, and receive IV fluids in-home? If so, I need some help! When I lived in Louisville, Kentucky, I used to get IV fluids in my home 3 times a week. I have Medicare for insurance, and the billing/payment from Medicare was never a problem. They paid for the in-home health care, IV fluids, and all of the supplies 100%. It was so helpful to have the IVs in my home when I needed them and not have to use precious energy to go out to an infusion center or ER. Now that we're in a small town, I have not been able to get in-home IV fluids. Everyone tells me that Medicare doesn't pay for them. I called my old home health agency in Kentucky to make sure that the Medicare rules hadn't changed in the past year. They said that as long as the billing comes from an agency that is contracted as "home health" that Medicare will pay for the IV fluids and supplies. In Louisville my home health agency was a big one. They had their own nurses, IV nurses, pharmacy, etc. So maybe that is the difference? The home health agency bought the IV fluids and supplies from the pharmacy, and then they billed Medicare for them. It all worked out so perfectly. I had to go to the ER twice last weekend for IV fluids. I'm glad that I have that option, but it is physically exhausting to go out when I'm doing that poorly. Plus, it costs twice as much to get the fluids in the ER! Does anyone know if there is a way to make this work with a small home health agency? Does anyone have experience with Medicare and in-home IV fluids in a small town? I'd appreciate any helpful tips if you've been through this experience and know a way around it.

Hi London, Only the last few posts and topics show up on your profile. It's this way for everyone, whether they've made 4 posts or 400 posts. If someone hasn't been active in a long time, then it may be that nothing shows up in the posts and topics section of their profile. If you are looking for a particular post of yours, you should be able to find it by using the search feature at the top right corner. If you click on the little gear symbol, more search options will come up. You can narrow down a search by member name, and this should make it easier to find the post/topic you are looking for. Rachel