Rachel

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

It is sad indeed. I have been praying for the families and friends of those affected. May they find comfort and peace in the midst of this tragedy.

This is an interesting article published by Mayo Clinic this month. They have created a new scoring system to assess autonomic dysfunction.

You can find the article here: COMPASS 31: A Refined and Abbreviated Composite Autonomic Symptom Score. I am linking to the abstract, but you can click on the tabs to view the full text or the PDF version.

You are welcome to start new threads or reply to an old topic - whichever you prefer! Sometimes there is an article or conversation in an old topic that someone wants to bring back up. Usually a new topic and conversation is created. You can do what you think is best.

We're glad to have you here.

Rachel

That's so exciting! Congratulations!

Sorry about that. The poll feature is confusing. Once you have finished creating the poll, click "Finish." The fill out the topic title and post as you would for a normal post. Then click "Post New Topic." This will post the poll as part of the new topic.

Rachel

Ginger,

I'm so sorry. My heart breaks for you, and I wish you didn't have to go through this. Know that I'll be thinking of you and praying for you.

Do you have a good local support system? I hope that you have family and friends nearby who will gladly step in and give you the help you need.

Hang in there, friend.

Rachel

Yes, it is operational. It works if you are using Internet Explorer. For some reason it doesn't work with Google Chrome. I don't know about other web browsers.

If you use a web browser that won't work with the online form, you can always email staff@dinet.org and we'll get a brochure sent out.

Thanks for the feedback everyone! I currently have a wheelchair with elevating legrests, and I plan on keeping it for occasional use. The problem with it is that it is too heavy for me to wheel by myself for more than a minute on a good day. The elevating leg rests are helpful, but not as helpful as they used to be. I can't sit up in my wheelchair for an extended period of time, so I have to lie down on the floor or in a recliner. Mostly the elevating leg rests just get in the way now, and they make it hard to get in and out of doctor's offices, stores, etc. I do want to keep this old chair, though, for the occasional situation in which it would be helpful. I hope to one day go to the zoo with my family, and the elevating leg rests will be beneficial then.

I think I'm going to get an ultralightweight rigid frame with swingaway leg rests. This will be helpful for me to use in my kitchen. I'll take the leg rests off while inside, that way I can use both my arms and legs to move my chair around the kitchen.

I think I will go just one inch smaller on my wheelchair width. I'm still debating about what armrests to choose.