gjensen

I was laughing picturing everyone struggling with them, and then the discussion about more gear just to get them on. I struggled with them to, and had my wife come help me. It was bad enough that I felt like I was putting on panty hose. I was trying to think of the name of the person that recommended them to me. I will not say the word that I was using as a replacement. LOL. Here I was trying to get them on to help manage my heart rate and high blood pressure, and giving myself a heart attack trying to get them on. I did get the hang of them after a couple wrestling matches. I can get the full set on and off pretty quick now. I think that they might help, but I am not certain yet. I am so up and down. If I can prove a small improvement they would be worth it.

Have you tried protesting their decision? Insurance companies drive me crazy. They will spend more money trying to spend less. Also, just how the order is written can mess us up. I would contact the insurance company and ask them why it is being refused. Not that it would make a difference, but it would be worth a shot. I had an experience once where I did that. They told me how the doctor needed to write it up for it to be approved.

Tammy, what do you like to do? What kinds of things interest you? Can you get out at all? Right now I can't drive. I do not know how you feel about going to church, or if you could pull that off every now and again . . . Alicia, do you have or like aquariums or terrariums? I ask because I like the stuff that you mentioned. I have found that I like my house more if I bring the outdoors in. An aquarium coupled with a plant light or two with some plants . . . I like terrariums and aquariums. Especially if what is going on inside them has some interest. I have also found that full spectrum lighting helps me. The short winter days drag on me before they end. Full spectrum lighting where I like to sit helps me. Kate/BigSky, I am struggling with the same. What I am trying to do is take advantage of my problem. I can't do as much, so I figure that it is time for the boys to be men. I can focus more on teaching them, and hope that they will be better for it. That interaction is good for them and me. Now that there is more on my already overworked wife, I am trying to think of how I an take some of the load off of her.

No, not a slurpee. LOL. Was not a dieticians dream either. I have a swallowing problem with this condition, so I have to be selective. Unfortunately many of the easier to swallow things with the Thanksgiving dinner was high carb/sugar. Soft roll that I picked at, yams, cranberry sauce, mash potatoes, etc. Then I topped it off with an ensure drink which does have sugar in it. I did not eat much, but what I ate was not good. I am going to get me some more strips and monitor this. I spoke to my father which is diabetic and the highest he had seen is 280. Makes me wonder about the results to. Just got similar results twice . . . I may have mentioned this, but the reason I bought this was a couple episodes that seamed that it could be high sugar related. I could not explain why I could have spikes like that, and then be high normal not too long after. I suspect that in time, I will find that incident to be a fluke.

Kate, welcome to the forum. I am new as well. I have found a lot of tips on tis site. I am feeling my way along, so I am no help. I will say that every day is different. It does take some time to know what could help or not.

I am not the only one then. I find mine rather disturbing. I am suffering it now. I could not sleep at all last night and that makes it worse. I would really love to understand this more.

I think that is a fascinating subject.

I double checked that result. It only varied by a few points checking another finger. I read that checking it an hour two later is better? It had dropped substantially an hour and a half later. I have run out of strips, but I will keep checking. I was in the normal range yesterday morning. 88? I think.

I cannot see getting back to work doing what I have done. It is too physically and mentally demanding. The problem is that it is all I know. I hate the idea of disability. I need to be making some kind of progress, and progress requires money. I do not know how I will adapt to this. Other than family concerns, I have the most trouble adapting to not being able to do. This is becoming a lesson in taking things day by day, and not looking too far ahead. Being a man, I am struggling with the humility that comes with being weak. I was considering going to school online, but for what? Who knows? It is hard to picture what I will be able to do a few years from now. Would hate to waste a lot of money that I do not have.

LooneyMom, This doctor did the Mayo panel on the first visit. They all came back negative. Now, I do not have a grip on what some of those tests are, and I do not know what the other possibilities could be. I have had a lot of blood work drawn. It is time for me to get a grip on all of this stuff. As I said, it took me a while just to figure out that what was troubling me was autonomic dysfunction. I have considered an auto immune type condition, because of the speed of the progression, and that it continues to progress. I also wonder about an inflammatory type response. The way my logic works, it seams that supplements like lipid acid etc. could be helpful once the immune response is settled down. I think it is interesting that you mentioned the Colostrum. I have thought back to it, but not considered using it. My thoughts were related to animals. It is used in young livestock that is failing to thrive, and it does boost the immune system. Have you read anything that implies that it could settle the immune system down? I checked my blood sugar this morning and it was not high. 88. I checked it after eating last night and it went to 384, but was 125 an hour later. I do not think I have a blood sugar problem, but might be considered someone that could develop one in time. This is something else that I do not know a lot about. I will let them rule that out though. Rachel I have read some posts about you and your son. I hope that you get all of the answers that you need soon.

I would not want to come across as bad mouthing one. I am comparing an experience that I have had. I had a UNC doctor suggest this might be in my head. That does not reflect on them all together. However, I could not imagine getting better service than what I have at Duke. All of the staff and doctors have been great. Out of 8 appointments (different dept and doctors), I have not had to wait for a single one. Every one has been on time. Tests results are messaged to me as they get them. If I message a doctor, I get a response within a day. The neurologist is not a sub specialist, but in my case that could be a benefit. I am not getting a quick diagnoses and being sent home with a treatment plan. They are digging to find the cause. This neurologist recognized my problem immediately. That is much different than what I have gotten used to. I could not say enough about my experience at Duke. They are very thorough. Like most of us here, I have a lot of symptoms. They are investigating every single one. Might mean seeing a couple different doctors, but they are less likely to miss something.

David, similar to the logic your doctor uses I am trying one thing at a time. I do not have an exercise program per say. I want to save that for doing something constructive if I can. For example I finished putting pine straw around my blueberry beds today. 300' of them. Fed and watered my birds etc. I probably walked a mile doing it. These things make me feel better mentally. I am paying for it now though. Fluids is a problem. My stomach gets slow, so I do what I can. I do push it. I am going to ask a local doctor about IV fluids semi regularly to help with that. I am starting to add salt. I think that it is interesting that you mentioned that pre diabetes can cause neuropathy. I bought myself a blood sugar monitor. I had some spells that reminded me of high blood sugar symptoms. I di not think that is what it was but I wanted to check. I decided to check my blood sugar before I ate anything this morning and it was 110. I thought that was a little high for an empty stomach. That is a test my neurologist wanted to do next week. He also mentioned doing a lip biopsy if this round of tests did not show anything. I do have a good neurologist concerning looking into causes. I am very pleased with Duke University. They just have to send you to UNC for the autonomic testing. The care between the two places is not comparable though.

Thank you for the very good response David. I started taking the r-lipoid acid supplement. You mentioned under your doctor's guidance. Is there anything that needs to be watched out for with this supplement? My tests for auto immune diseases have come back negative. I have not looked into what might be missing. Yet. It sounds like you are with a good doctor. I like that mine is being as thorough as he is in digging into possible causes. I will admit that I am getting ready to start doing something about it. I am getting worse, and not better. Again, I appreciate the thoughtful response. I will start digging into this, this weekend. It took me a while to figure out what was happening to me, and to get in front of the right people.

I have found out that I have small fiber neuropathy. I know that there is a lot of possible causes. Auto immune tests are negative, so far. I have not, but am beginning to try getting my head wrapped around this. Possible causes. Treatments. Prognosis. Does anyone with neuropathy get any improvement? How may people have it? From what? What kind of help have they received?

I have never been sharp, but I am even less so now. I really want to understand this "brain thing". All of this is new to me, so I am no help. I did get told that I have small fiber neuropathy today. Must be large fiber to, LOL.

I know what you mean. Out of all the things that bug me, this may be the worst. I like to read with my boys, and it has been difficult lately. I do not like that. I do not like the sound sensitivity around them either. I like to hear them horse around, but it cuts to the bone sometimes.

What you are describing sounds like something that I am troubled by now. I do not know what to make of it either. I had some decent days last week. Yesterday was tolerable. I stayed on my feet outside for almost five hours yesterday, but into the evening my head began to have an aching sickly feeling to it. I feel awful. All of my weird symptoms are back. Noise intolerance, breathing/sleeping problems, chattering, trembling. I am starting to wonder if in those times, I am getting enough blood to my brain. Or if there is a pressure problem. I do not know what to make of it. Did I push it to far? Regardless, I feel horrible. I have a painful sickly feeling that is no fun. I get this same feeling temporarily if I pour warm or hot water over my head.

Macca, that is what I hope for. I might not be able to do what I have always done, but it would be nice to have a shot at doing something.

I am out of work. I was a commercial construction superintendent. Looks like I will have to figure something new out. I cannot see climbing to the sixth and seventh floor etc. lol.

Sarah, do not count anything out yet. Who could know what the future holds? I cannot see past my forehead. How could I know what is around the corner? There is always something to look forward to. I have five children. Two are grown. Three at home. Four grandchildren. Timothy, 28. Kristi, 24. Each has two children. One of each of those is adopted. Timothy and Kristi are not mine biologicly, but they call, me dad. Their kids make me feel old when they call me pa pa or grandpa, but they tickle me. I have three boys at home. Jason 16, Matthew 13, and George 12. The middle son at home is adopted. Ironicly, maybe the most loyal one out of the bunch. They are all great. Different. Individuals. None are really mine. I did not earn them or pick them out as they would be. They have just kept coming. If I can get better, I would like to adopt another. We will see. I am a grandfather now to. That is what I want for you to Sarah. Peace. You keep plugging at it like you are. From what I can tell, you will. Who knows what they could bring you?

I get low grade fevers semi frequently. Typically my temp is on the low side. I never noticed them before the onset of my symptoms. The headaches/neck aches etc. I am having my MRI with contrast soon (today). Both neurologists that I have seen believed that problems with the cervical spine could cause my symptoms. They both ordered MRIs. The first, after seeing one, did not believe what he saw correlated with my symptoms. The second, better, neurologist does not believe that you can tell either way by the original MRI. His reason is that it is blurry (I must have been moving), and it was without contrast. That is why I am having the second one with contrast.

I hope that your life gets to be a bit more boring than it has been.

I would wait on the doctors advice before any real decisions. That said, you know where you have been and are now. You do want to manage your condition well, and you know more what that is like than anyone. I hope that with some help, you can continue to try to do what you want. Good luck. Keep us updated.

I just do not know Sarah, but i am thinking of you. You have someone rooting for you in SC.

It is of some comfort to know that others experience it with POTS. Originally it disturbed me more that it does now, like a lot of the symptoms. Just accept them at some point. I wish that I understood the process better. I keep looking it up, but have never found an answer that satisfies me.