gjensen

Rosey, what kind of muscle twitches do you get? I was getting mild one periodically all over he place. Now they are pretty intense, and dominate on the right side. Some are even painful and where I get one the most, it hurts even when it is not twitching. Katy, I looked up Myositisis this evening after your response. I do not seam to fit it, but I have been so wrong about so much. I will look into understanding it more.

Inability to lay on their sides. Lower arm weakness. Substantial muscle loss in the lower arms and legs. Constant burning sensation centered directly over the heart. Muscle twitching. Occasionally intense, and painful. Sleep transition problems. Piece by piece I am coming to understand this, but these are some things I have not come to grips with, and I have not got any explanations from the doctor(s). I also would like to hear if anyone has tried Butchers Broom.

I do not know how it could be helpful for us, but it caught my attention. http://www.eecp.com/what-is-eecp.php

Yogini, I did not explain that very well. Supine, my blood pressure is normal. 110/70. Standing, I initially have a drop. Then I often see a rise in BP and fluctuation. The quandary I mentioned was related to a vasoconstrictor. I suspect that I would benefit but sense I do not have low blood pressure, my concern was that I would give myself high blood pressure. What I suspect would help me the most is florinef and a mild vasoconstrictor. Beta Blockers (or at least the one I tried) dropped my blood pressure too low even on very small doses. It also gave me a lot of trouble breathing. This beta Blocker was Bystolic. Mestinon sends me for a ride. It is awful for me. It definitely over stimulates me, and gives me especially high blood pressure, and reliably makes my standing blood pressure even higher. As high has 180/120. It gives me the shakes and trouble breathing. My stomach, intestines, and esophagus spasms excessively. The feeling it gives is most uncomfortable. I tolerate clonidine well. It is no HR fix for me, but it seams to keep things settled and I do not have any of my "spells" on it. I find that if I split the dose throughout the day, I get a more reliable benefit. Right now I could not care less about he HR and Blood Pressure. For me it is tolerable. What is not tolerable and is debilitating is my head symptoms. At my worst (which seams more often than not), getting up for any length of time puts me down for a very long time. I do not faint, well I have, but that is not a concern. It is the head pain, numb cheeks, inability to think, dizziness etc. that can last for days. I get some relief laying down, but obviously I cannot stay in this bed forever. My largest challenge is getting a doctor on the same page with me. Is there any mild vasoconstrictors that are safe, over the counter, and not a stimulant? I seam sensitive to stimulants right now. I would go back on the licorice and see if the combination of the two with clonidine and compression garments would be helpful.

All it could diagnose is dysphagia. I would be blurry on treatment myself. You would want to know if there was a risk of aspiration, and if there is not, it would settle that concern. It would establish what the current condition is, if it is decided to check it later for progression.

The first thing a doctor has to be able to do is care. So many of the problems that we and others have with doctors would be solved by that single point. I am of the opinion that if they are unable to do that one thing, then they have no business in the business. I understand the necessity in separated logic from emotion, but you cannot allow logic to separate you from the patient. This business is full of egos, and the business has no place for egos. All of the education that many have and still not be able to see passed their foreheads. I would take a doctor that did not know or had no experience with these conditions and cared, over a doctor that knew it all and did not care. I realize that it is a business and their is a lot of red tape. I also realize that we do not fit a cookie cutter mold. We can be a bit high maintenance, but I do not think any of it is an excuse. If one less patient per day is the solution, so be it. I do not know what the solution is but if there was more concern it would be found. I apologize for venting. What you are going through is difficult and you should have a doctor willing to help you sort this out. One that did not know and cared would figure it out. I do not know what the solution is for you, but keep plugging at it and you will get it figured out. Do not dismiss any possibility and stay focused on what your goals are. Do not focus on the problem itself. Just deal with it as it comes, and let it go when it goes. This stuff is tough, but I can tell that you are tough enough to handle it. I am rooting for you.

Becia, I hate to come across as recommending anything. I have a hard time myself, but I would really consider finding a new Neurologist. Someone that can work with you up to and after Toledo.

I had a couple swallowing tests. They are helpful, but not 100% effective if you do not have he problem all of the time.

That is good news Sarah. Glad to here that you are getting some relief. I hope that I do as well as you in accepting my situation.

The top of my esophagus is dry, so it can give me trouble getting things down. I also feel it more. I do have dry mouth. In addition, my saliva can get excessively think and becomes it's own swallowing problem. It takes some effort to eat anything, and I drink a lo of shakes. It does not make me cough or choke, and liquids are ok. Mostly. I would be concerned about aspiration. A swallowing test might be a good idea. They could tell if the liquid is penetrating and if there is a risk of aspiration.

Another thing. Has anyone had Neurontin prescribed for migraines?

Maybe that is what I am having then. Can they last for days? Whatever it is puts me down for days.

What did they look at, for them to say everything looked normal? I ask because I am in the middle of one of my spells. Laying in bed and cannot lift my head. Dizzy and sickly. Face is hot and cheeks are numb. Ears are ringing, arms are weak. Legs and feet tingling. Occasionally my eye sight is spotty. Having trouble thinking. Chest pain centered over my heart.

Becia, keep your head up. I know the feeling, but it will get better.

From what I was reading, you would look for it in the upper neck.

Have you checked your temperature any other way? If I was reading that low, I would want to. In my "flares" I get hot and my face especially gets hot, but my temps read low for me. I have always been right on the normal of 98.6, but I regularly read a little low now. Between 97 and 97.5. I do not know what that means if anything.

That reminds me of something. I had a neck and brain MRI early into this. it was annoying but not to bad. I had one later once I had become more symptomatic, and it was very difficult to tolerate. My sound sensitivity was much more pronounced, and my periodic muscle twitching went into overdrive. There was a marked difference between the two experiences. As a result I was more anxious the second experience over the first.

I lost a significant amount of weight and muscle tone. I was able to gain a third of my weight back. I have been making some nutrient dense shakes, and counting calories. I put a lot of effort into getting some weight back on. I still have a ways to go, but I am making progress. From my experience, the best I could say is find a doctor familiar with this, or you might run into more dead ends. I thought I was doing the right things and getting to the right people, but I was wrong. 9 months into this, I am still floundering around. Do not take no for an answer. You will have to be your own advocate. I have been in front of a lot of doctors around here. I received a variety of reactions. I promise this much, they will not forget me. Another is that if someone is unfortunate enough to come behind me, they will get off on the right foot sooner. Look through the doctor's list on here, and if you see that someone is in your area . . . ask questions about who they have seen.

I thought about discussing my anxiety with one. It is a symptom that I need to manage at least. But . . . if there is a blood flow problem to the brain that can cause us a collection of symptoms. My theory anyways. I am new to this, so I do not know a lot. I can relate with the doctor situation though.

Do not take me too seriously. I did notice what comes first, so dealing with that may deal with the other. On the other hand, I doubt believing anything is a fix. But maybe it could be. The events are out of your control otherwise you would not have them. I am sure that you do not enjoy them. It seams to me that we are often dismissed because these things overlap. For example I have developed an anxiety issue. I do not know for certain why, but it is not because of "unresolved issues". There is not a darned thing that I could resolve that would fix anything. It seams to me that my anxiety issues are part of what is going on with me, but not the original cause. I think that anxiety is a secondary cause, and I would guess instigates or exaggerates some of my symptoms. It is just not first in the order of things. And on the other hand anxiety would seam natural when so many unusual things are happening. I think that your doctor is right in believing that there is a connection. I think he is wrong in not considering a cause other than what is in your control. Your brain waves may be normal, but it does not mean that there is not anything else going on. I picture a day where psychiatry and neurology are one and the same.

Rama, I am having a bit of a quandary with that. I do want to try a mild vasoconstrictor. My concern has been that I tend to have high blood pressure when I am standing or trying to do anything. Slightly low otherwise. I have not been tested, but I am doubting that my presentation is hyper. My blood pressure drops on a TTT. I think the HBP is part of the effort to get the blood up. The high blood pressure comes in short lived spells. I am trying to rationalize the irrational, but I have become convinced that if I can improve this one point that my situation would be manageable. The tachycardia is a burden but not disabling on it's own. The head symptoms that I have is disabling. I cannot do much when I am most symptomatic and driving is out of the question. I have a laundry list of symptoms that I believe originates in one problem. Convincing a doctor is another matter. My neurologist thinks that I am having migraines and has subscribed Neurontin. Regardless of what the truth is, something is going on upstairs.

I tried Mestinon for the third time today. I cannot take it. It instigates my spells every time. I wish that I understood why I cannot tolerate it. An example is this morning. I felt it kicking in. Within an hour of taking it, I was riding a roller coaster of fluctuating heart rate and blood pressure. By an hour and half in it my blood pressure got pretty high, was having trouble breathing. esophageal spasms, shaking all over as if I was cold but I was not, and sweating. This was just 30mg. What I did not like the most was this awful feeling that spread over me. My wife said that I acted "out there". Blood pressure got to 180/100.

I have no suggestions either. I did want to mention that I am sorry for your sister, and anyone that goes through this. I was not familiar with it until visiting this site. I really hope that a solution is found.

I have had two procedure done with sedation and no problems. I was not as symptomatic as I am now. I recently had the tube down my throat to test contractions and that was a very uncomfortable procedure. I thought about this thread when I had it.

I have the same problems. Was both, and mostly left. Now it is only right but ringing loud enough for four. I had some temporary relief with antihistamine. Now it does not help, but it is only one ear now. It is worse as the day goes on, and after spending lengths of time up right. It is worse during my flares. It also get worse before one of my spells. I know when the spell is coming because of my ears. My sound sensitivity goes up and down with the ear ringing. I would try two things. The antihistamine and thoroughly cleaning the ears with ear drops. I did read a report of the problem being common with people with degenerative discs above C4/C5 and correcting one corrected the other. I have also read some getting relief by stimulating the vagus nerve. I think mine is related to cerebral blood flow, somehow.