gjensen

Take someone with experience more seriously than myself, and we are all different. However, when I feel a little better, I tend to "push" it. That is usually followed by a flare in symptoms which includes the higher heart rates. I do not know why, but that seams to be the case. Possibly working into it a bit more gradually would help. I would ask your doctor what he/she thinks. What I am doing is still moving forward (regardless of how bad I feel), but learning to be more patient and working into it more slowly. I intend to start the bike in another month. First I am walking my property in the late morning and evening (half mile each), and taking care of my birds. I need this psychologically, so it is priority. I do put leg weights on. I plan to add getting my fruit trees and bushes trimmed over the next few weekends. I have been pecking at it. Something that I did in two weekends before has been ongoing. Once I have made it that far, I will start the bike. Little by little. I am trying to avoid the going backwards, but it is hard, because it is up and down anyways. Every time I get carried away, I go backwards.

I am a bit surprised how sensitive that I have become to some things. Sensitivities that I did not have before.

Katie, that sounds like an excellent arraignment. I hope that I end up as fortunate as yourself.

No subtype, and no treatment plan. I have been diagnosed with small fiber neuropathy, so as far as I am concerned that is my subtype. From my limited understanding, I feel like identifying the mechanisms behind it all is more important than a label or name. When I read posts on here, it seams that some have overlapping subtypes. If it was not known that I had neuropathy, you could put me in a different box on different days. My BP fell to 76/42 on the first TTT, and my HR went to 160. The BP continued to drop and the HR continued to rise, so they concluded the test in the 5 minute range. I usually have a decent drop when I stand (always have), but my BP rises afterwards. Occasionally it surges immediately. I know when this is, because the heart starts pounding immediately. My BP is normal otherwise. If you gave me a TTT 10 times, you would get 10 different results. I am vulnerable to adrenalin surges. Particularly in the morning. If I had the test to see if I was hyper, I guarantee many mornings I would be considered so. Otherwise likely not, but there is some times that I do get this in spells that is not in the morning. So, depends when you tested me. I was put on a Beta Blocker after a 200-220 Hr at an ER. I quit taking it after I decided it was not for me. I asked for Clonidine (because of my adrenalin surges), and started that. I was asked to try Mestinon twice, and it did not work out well. I filled a prescription for Neurontin (supposed migraines), but I have not taken any. I want to get an idea of what the root of that problem is, and try to deal with it more effectively. If it is possible. I am trying not to get a bunch of meds piled up before this is understood better. Trying not to get into not knowing which is causing what. I am anxious for improvements, but I do not want to make the mess bigger. Part of the anxiousness is that I do not feel that I am far off from this being manageable. Most days. Along the way while I was running through the doctors, I got prescribed a lot of stuff for no good reason. No one was checking for interactions, etc. I just stayed away from all of that, and figured out for myself what was right or wrong. I am experimenting with some herbal stuff to get an idea what could help. I have discussed some things with my doctor. Some things he does not feel good about, and some things I do not feel good about. My neurologist is still looking for causes. I can't tell exactly if there is a lack of understanding, or if he thinks there is more to this. I think it is both. He is the sharpest doc that I have seen, and his resume is impressive. He is also very responsive and considerate. If I email him, I get a response within a day.The testing has been extensive. I am afraid that I may understand this better than he, but I live with it day in and day out. I am intimately familiar. At least he is not quick to pile on the meds though. If I was asked, I would be quick to suggest getting referred to Mayo or similar. Somewhere where you can get the full battery of testing by subspecialists early on. There is really no substitution for that. That is a good start. For a lot of us that would not be the end of it all, but seams the best way to start. They deal with this stuff everyday. As sharp as my neuro is, he is limited to what I tell him. Sure he gets the basics, but you cannot always be certain without testing to verify. As many symptoms that I have, it has to get confusing.

I saw that they were associated with ME. I am still having a milder spell. Every bit of all of this is like that. I think that I am heading back into a bad spell, and I suspect they will pick up in frequency and intensity. Did any lead into nerve pain for you? Where one was acting up the most and was the most intense, now hurts a great deal. I do not know whether or not I should assume a connection. It feels like there is an active process going on. I am always experiencing something. It is very very rare to not be having something going on. Weird stuff this stuff is.

I do not have any experience with that, but I wondered if a water bed would be helpful. I remember them as a kid being cool, unless the heater was on.

Bellgirl. I had an emg early into this and it was supposed to be normal. I did not have them back then. Ironicly, after posting this, I have only had a few minor small ones. That is how all of this goes though. I will have to look into this kidney thing. Never thought of issues outside of neurological. I should not be dehydrated as much water as I do drink, and my potassium is normal right now How could low blood flow cause it? I will have to look into that. This illness never quits teaching.

Freaked, I feel for you. You are in a situation where you literally have to live with other opinions. That is not an easy thing to do when you have the challenges that you already have. Does your doctor understand your situation well? Maybe he/she could help explain this to them. Or some educational materials? Often when someone understands more fully, they are more sympathetic. I can't speak for them, but had I not understood . . . I may have been pushier with one of my own. Not because I did not care, but because I did. That is how I tended to deal with problems. By making them go away. Obviously you cannot do anything to make this go away. If I was young and was living with my parents, I would have gotten the same or worse. What you are looking for right now is small victories. They are in control, so you will win no war. Just set small goals for improvement. One at a time. What you are dealing with now is temporary. Try to find some comfort in that. And if your symptoms are not well managed, that may be some of those small victories that you are looking for. And do what you can for improvement, but do not get down or start second guessing yourself. Someone else's opinion is just that. An opinion. Opinions are worth nothing. I am a 40 year old man. The head of a house. A large construction superintendent. No one special, but not someone you would call weak either. This has put me down. I push it and it pushes back. This is a very difficult illness to contend with. In short, if this would put me down, it could put anyone down. Like your mother said, I do not intend to live under this illness. I will do everything I can not to. The challenge is that this illness has a mind of it's own, and it decides when and what it is going to do. It does not mean that you cannot strive for and achieve improvements. Obviously, you are very intelligent and insightful. You see both sides, and have a broad focus. That will help you in this. Just keep plugging at it, and things will get better for you. Even on days that you feel like they will not. Keep your chin up and keep plugging at it. And when you need to vent, the people here are good about that.

Thank you Rosy, and Raisin. Rosy, I see no connection to stress for me. Early when they were mild, I chalked them up to stress or something not worth worrying about. No anemia, and potassium is ok right now. Thinking about it, there has been a variety of triggers. None consistently. I mentioned the orthostatic triggers, but that is always the same set of twitching. My right upper and lower arm and the right chest. That comes with a pain in the middle back. Between the lower shoulder blades. One trigger was a particular MRI. They went crazy all over the place. From my head to my toes. An MRI afterwards did not trigger them at all. dkd, my neurologist has not commented on them at all. I was reading a couple of his reports this weekend. He mentions them, with no explanation. He did mention that I was a complicated patient. LOL.

I did not make too much of them initially. They are getting pretty intense though. You can see some of them through the clothing. Occasionally they can move the limb. They are inside and out to. Like I said, initially, I dismissed them. I am starting to think there is something to them now. I get a painful one in my esophagus that can startle me. It takes me a second to decide if it is my heart or not. LOL.

Darlene, I take Alpha Lipoic Acid. I stopped taking it night. It seamed to make my reflux worse. Taking it at lunch, I had not noticeable ill effects.

Good luck, and I hope they treat you well.

(Did I even spell that right?) Does anyone here get these? Mine vary from mild and throughout to intensely painful and localized. Often it is on one side. Everyday and every week is different. Occasionally it seams to be triggered by being upright, and other times there seams to be no connection.

I wish it was that easy to. I would not be laying here typing this. I wish that I could one of these doctors just my head symptoms for a day. Just one 24 hour set, and nothing else.

See if you can get your cardio to get a swallowing test ordered. Some how. You can get that out of the way before March. It could possibly show where the problem is. I do not know why no one has ordered that for you.

Yeah, the 20lbs does not matter anymore does it? I am feeling better than I was. I keep being hopeful of improvement. Cautious hope, because I have been here before.

I do not know why a regular standing test would not be enough for him until the official standardized test could be done.

What is the med?

I wanted to offer more help, but I do not have experience with very low blood pressure etc. I have become familiar with the presentation distantly. It would be better for someone that has experienced this first hand to comment. Good luck to you and your daughter.

I am trying to sort out how to deal with migraines. I suspect that a lot of my head symptoms is related to migraines. I did not know there was so much to migraines. I had always thought they were bad headaches. I had no idea. My trigger is being upright.

I hope that you get a remission again. I think that is interesting though. When I came down with this, I had a heavy workload at home and work. I was also losing and lost a lot of weight.

You found a good place. I have noticed a few good mothers on here.

Andy, if nothing else, your persistence is admirable. I hope to hear how it goes.

Becia, I do not know when Toledo is. In the mean time, I think you need to get referred to another neurologist. Any neurologist that does not order a swallowing study with complaints like that has a problem. In a sense I can relate. I have had no luck locally, and not made any friends. On a local level if I have anymore than a tummy ache, it is too much. Someone made the comment to me, that their doctor got more and more sheepish as they realized they were in over their head. I wonder if that is the cause of the pull back sometimes. I am getting a new GP after a frank honest visit last week. In so many words he said that he knew nothing and wanted nothing to do with it. I had to push him a bit to get that out. I wanted to know what I was dealing with. I need a GP that keeps it all tied together. The point in my rambling is that you have to get to someone locally that can be of assistance in the day to day stuff. I do not think you have found that yet. Doesn't sound like it. I am in a similarly colored boat. Also, try drinking out of a straw. The process is a bit different and might help. Might not, but it may be worth a shot.

Becia, I will be thinking of you today. I also agree with Tobiano. You need to get a swallowing study done. You need to now if the food is penetrating and/or there is a risk of aspiration. Something that you have to know.