SaraC628

I got really lucky when I went to my local neurologist, well kind of. I went diagnosed for months and had several doctors tell me that it was stress. When I went to the neurologist she did a brain MRI and drew a few labs and then immediately wanted me to be seen to have autonomic testing at Froedtert. She has told me that all of my symptoms are due to the OI, even the things that I hae thought are crazy. However, when it came to filling out disability paperwork she wrote that she had started me on Florinef and that I would be completely functional on that medication. She had to take me off of it within two weeks. I was able to start it again, but it has not had the results she had hoped for. Then when I called and explained this to her nurse after my long-term diasbility was denied based on this, she refused to fill out a different disability form my attorney. I feel like she understands what is happening, but I am really confused about how all the paperwork was filled out.

Hi,

I have been doing a lot of research and I am pretty sure that I have read that most people with dysautonomia have low sodium levels. I know that part of the recommended treatment is to increase fluids and sodium intake.

I was diagnosed with Orthostatic Intolerance after a TTT, however I noticed that all of my blood work shows my sodium levels at the very tip top of normal. I was wondering if anyone else with OI/POTS have high sodium levels? And this blood work was all taken prior to the diagnosis and I was not on any kind of high sodium diet.

Thanks!!

Hi techr4k,

Dr. Hiner is not the new doctor. Based on the research I have done it appears that he focuses on movement disorders, particularly Parkinsons. I believe he has been a Froedtert for a few years. When my appointment was scheduled they did not give me an option of doctors. I know that my local neurologist sent the referral asking that I be seen by an autonomic specialist. And I believe Dr. Hiner had to review my records prior to an appointment being scheduled. However, I was able to get in to see him surprisingly fast. About 10 days from the date it was scheduled. My appointment is on Feb. 12th, I will try to remember to let you know how it goes.

This is the part of this illness that makes me feel the most like a failure. I have learned to try not to make plans with the kids. We typically surprise them on a day I am feeling good, by going out to lunch or something else. Fortunately and unfortunately, my kids like tv, so we watch family movies and have certain tv shows we enjoy watching together. My older kids are 8 and 12. However, I have a 19 month old. He is much harder to take care of. I am fortunate that he has always been really laid back. I can practically sit, leaning into the couch, and play with him. I don't like to carry him around the house though, so I usually feed him his dinner in his jumper in the living room when my husband is at work. I also put him somewhere safe if I start to feel really bad. More often than not my husband gives him his baths as I am afraid of getting really weak with him in the tub.

I too, feel jealous at times. I feel awful saying this, but I find myself being jealous of people that have cancer, well at least a treatable form. In the time, that I have been sick I know of someone that had breast cancer and after operations and treatments is now back to normal. I was really upset when my employer chose to terminate my employment after I had been off per doctors orders. They did not even inform me that there was a seperate process for applying for long-term diability or that I would still qualify after being terminated. The reason I bring this up is because this same employer was known for helping out employees after a serious accident or employees suffering from cancer. They would have raffles to raise money for them and all sorts of things. But because I was undiagnosed at the time they treated me like I was making it all up, even though there were instances at work in which I had turned white as a ghost and nearly passed out. I had also lost almost 50 pounds so they had to know that when I said I literally was not eating that it had to be true.

I have been really luck in that my husband is very supportive and very understanding. He never once has acted like I am faking it or exaggerating my symptoms. I also try to remember most days that I could be much worse than I am. I know that I question "why me", but I also know that everything happens for a reason and I continue to try to see the silver lining.

Let me clarify as well...I really am hoping to see some of your POSITIVE experiences. I want to be able to walk in with a positive attitude and feel more relaxed about the appointment.

I can't speak from experience, I have not tried to begin any exercise yet. I am already so exhausted. I have read a few things about trying to begin an exercise routine that is really light and starting at only doing a couple of minutes at a time and trying to work up from there. I'm not sure if it would work for you, but it might be worth a shot. Good luck!

Hello,

I was just referred to Dr. Hiner at Froedtert in Milwaukee. I am getting really nervous as I have seen a handful of bad reviews regarding him. I have been diagnsosed with Orthostatic Intolerance and mine is bad enough that I am unable to drive or work. Even when I don't feel lghtheaded, I get so overwhelimingly tired that I feel like my body is just going to stop. I am on Florinef and even that does not help. Well, it helps, just not enough to make me functional again. I only have a couple of really good days every few months. I also have a few underlying things that keep popping up (reactive hypoglycemia, chronic sinitus, low iron, low vitamin D). I am in the proccess of filing an appeal related to my long-term disabikity denial and I have applied for social security, at age 30!!

I really want to know what your experiences have been with the doctor. Does he have a good bedside manner? Was he able to help improve your symptoms? Does he understand that this can illness can cause disability?

I have been struggling with this for more than a year and a half and have been to at least a dozen doctors. I am really scared that if Dr. Hiner does not help me or understand what I am going through that I have no where else to turn. Any information would be greatly appreciated.

Thanks!!

Hi, I am very newly diagnosed after about 10 months of doctors telling me maybe my issues were stress related. I actually have not seen my neurologist yet, but I was able to get a copy of the report from Froedtert where I had my testing done.

According to my report I have orthostatic intolerance and mild sympathetic insufficiency. The report states to consider anti-orthostatic measures (salt, fluids, Florinef). Also states to consider repeat testing in one year.

I am going to see my local neurologist on Sept. 4th in Appleton and I am wondering what types of things I should be asking her about. I want to make sure I get the information I need. Is anyone out there from Wisconsin? Do you see a local neurologist or cardiologist or do you see a doctor at Froedtert? How often do you have check ups? How long are you typically testing a medication to see if it is effective?

And is OI the same as POTS?

I think that is all for now. Any advise would be greatly appreciated!

Sara