I, for at least one, am sensitive about anyone touching my affected right scapula. I am not sure why, or if this is common- but if anyone comes close to touching me, I want to punch them- Well, maybe that is extreme, but at least I want them to stop. It really does make me feel nervous.
Today I was at one of our local home improvement stores- just standing there, and suddenly, I felt something brush past me that bumped my right scapula. I had no idea it stuck out that far that this might be an issue. That is why I am considering getting a flashing light attached somehow. I am joking a bit. Come on everyone- It is called personal space. If you pass by someone close enough to bump their shoulder blade, you are too close. Of course, I guess mine must be an additional inch or two further out than anyone else. That is still too close. Maybe a red flag would do?
Friday, June 26, 2009
Wednesday, June 24, 2009
Short update
I had planned to see my own regular doctor yesterday just to get him into the loop with my NA. I had not gone into anything with him before this since it was a workman’s compensation case, and I was still seeing doctors through them. But, I had not had a regular workers comp visit for over a year, and they had pronounced me stable, needing no future medical care (like they know) and all that other mumbo- jumbo that makes more sense to them than anyone else, so I thought I was in the clear to see someone else and get another opinion. Evidently, since the comp case is still open- whether I am seeing anyone now or not- my regular doctor cannot bill any services on anything that workers comp is still looking into. Until the claim is closed, I am in limbo about asking for any other guidance about it. I have waited this long: I can wait longer.
I hope that does not preclude me from trying to find out what caused this in other ways.
In my ongoing strength/weakness test of pushups, today I can do five, barely. And now I am shaking just typing this. It varies a bit day to day, but overall, the weakness is persisting.
I hope that does not preclude me from trying to find out what caused this in other ways.
In my ongoing strength/weakness test of pushups, today I can do five, barely. And now I am shaking just typing this. It varies a bit day to day, but overall, the weakness is persisting.
Wednesday, June 17, 2009
Possibly an attack prior to 2000 I had forgotten about
I was discussing my shoulder problems with someone yesterday who reminded me that I may have had a related shoulder issue way back in 1983. I do remember that muscles in the area of my right scapula were extremely sore for a number of weeks: so much in fact that I had difficulty breathing fully and movement was severely restricted. They also remembered that this pain went up into my neck making it difficult to keep my head supported without pain. It is funny how you can block out bad memories, but I do remember it now. I wonder if this is the attack that started me down the current path, or if it was just a very stiff neck. I think if this is related, it would pretty much nail down HNA as the correct diagnosis because it would show the pattern occurring over a much longer time than before, and would mean I have actually had three attacks that I can remember.
Tuesday, June 16, 2009
From the Dutch Neuromuscular Research Center
This Dutch Neuromuscular Research Center site is one of the better web pages I have seen about NA and HNA.
Something I have been trying to determine for myself is whether I have the idiopathic or the hereditary version; NA or HNA. Here it is suggested that at least statistically speaking, I may have more of a chance to fall into the hereditary group.
From the site:
“In the idiopathic form of NA, patients usually suffer only one attack in their life. Only 1 out of 20 people suffer a second attack, sometimes within months, sometimes many years after the initial one. In the hereditary form, attacks recur more frequently, and the average number of attacks is one per 6.5 years.”
It is still not proof of anything, but the time from my first to second attack was around 6.5 years. I certainly would not want to upset the average.
The site also warns against possibility of developing a frozen shoulder if the pain never allows enough full movement. I was lucky there I guess. My pain was not bad enough to cause any further movement problems.
The ailment is varied with how it impacts each person. From the site:
“Because of this clinical variability, it is difficult to predict an individual patient his or her prognosis, unless the personal course and severity of the paresis are fully taken into account. Most textbooks say that after 2-3 years, over 95% of the patients will have recovered fully; however, our own experiences with both INA and HNA patients in the past 8 years have not been as hopeful. Although most people do show signs of recovery, and keep improving in the first 2-3 years after an attacks, many are left with persisting impairments or handicaps because they have not regained full strength or endurance of some muscle groups, or have shoulder joint instabilities and altered mobility which causes tendomyogenic pains. In a previous survey, 1/3 of patients with HNA were permanently unable to work because of their disorder.”
Something I have been trying to determine for myself is whether I have the idiopathic or the hereditary version; NA or HNA. Here it is suggested that at least statistically speaking, I may have more of a chance to fall into the hereditary group.
From the site:
“In the idiopathic form of NA, patients usually suffer only one attack in their life. Only 1 out of 20 people suffer a second attack, sometimes within months, sometimes many years after the initial one. In the hereditary form, attacks recur more frequently, and the average number of attacks is one per 6.5 years.”
It is still not proof of anything, but the time from my first to second attack was around 6.5 years. I certainly would not want to upset the average.
The site also warns against possibility of developing a frozen shoulder if the pain never allows enough full movement. I was lucky there I guess. My pain was not bad enough to cause any further movement problems.
The ailment is varied with how it impacts each person. From the site:
“Because of this clinical variability, it is difficult to predict an individual patient his or her prognosis, unless the personal course and severity of the paresis are fully taken into account. Most textbooks say that after 2-3 years, over 95% of the patients will have recovered fully; however, our own experiences with both INA and HNA patients in the past 8 years have not been as hopeful. Although most people do show signs of recovery, and keep improving in the first 2-3 years after an attacks, many are left with persisting impairments or handicaps because they have not regained full strength or endurance of some muscle groups, or have shoulder joint instabilities and altered mobility which causes tendomyogenic pains. In a previous survey, 1/3 of patients with HNA were permanently unable to work because of their disorder.”
Thursday, June 11, 2009
Long term Pain and Fatigue Study
In the March 2009 Archives of Physical Medicine and Rehabilitation there is a study listing (Long-Term Pain, Fatigue, and Impairment in Neuralgic Amyotrophy) that says “it has become clear that neuralgic amyotrophy (NA; idiopathic and hereditary brachial plexus neuropathy) has a less optimistic prognosis than usually assumed.” Great, I thought it would be good news. They conclude “A significant number of NA patients suffer from persistent pain and fatigue, leading to impairment.”
Part of this no doubt is because if your NA is the type that recurs, you are just getting to feel a bit better from one attack when another one takes you down again. Anyone who has NA or HNA could probably come to that same conclusion.
Part of this no doubt is because if your NA is the type that recurs, you are just getting to feel a bit better from one attack when another one takes you down again. Anyone who has NA or HNA could probably come to that same conclusion.
Wednesday, June 10, 2009
Sometimes functions that had been lost return- almost
When I first had any problem related to PTS or AN, whatever you want to call it, it was my right hand that was impacted. At the time, everyone thought this was a simple case of Anterior Interosseous Nerve Syndrome. The only problem was that I had not had any of the common triggers of this syndrome. I thought my doctors had the diagnosis nailed down. After all, they were hand experts. Of course, now looking back, it bothers me that none of the experts ever listened to me when I told them that it all started in my upper arm. I tried to give them clues even then, and even though I did not really know what clue I was trying to give.
Out of the blue, I have this very rare problem that seems to have rendered my right hand almost useless. I say almost, because it was still OK for things that did not require any finesse. I could not pick up a pen, and even if I could pick one up, I could not write at first. It took me a bit of experimentation to find a way to hold a pen, and then a bit of practice to relearn the wrong way to write- simply by moving my entire hand instead of holding the pen, and making use of the finger tips to control making the letters flow.
From earlier posts, I have mentioned that I was constantly keeping my hands and fingers of my right hand in motion. Part of this included trying to hold things with my thumb and index finger. Early on, I was not successful holding anything. I could barely hold my thumb and index finger together tightly enough to do any movement. Over time, this changed and I could get them to hold together and even bring them from the flattened finger pinch back into a more standard O. At that point I started to try that exercise with a pencil between my fingers. My doctors all thought I would never regain use of my hand without surgery, so I had a lot of incentive to prove them wrong.
I eventually had some return of my index finger movement. Shortly after that, I started to hold the pen or pencils between my index finger and thumb, and with my left hand, I would grab the pencil and move the tip while I tried to keep hold it with my almost useless finger tips. Over time, I could hold on with more strength. On occasion I would try to hold the pencil or pen down against paper. Usually, this action caused one thing to happen. That would be the pen or pencil flipping away from me. Eventually, I could hold the pen in contact with the paper, and I would try the next step; to move the pen against paper. And of course, that would flip the pen out of my hand. After a while doing this, and also trying to hold the pen as my left hand pushed and pulled it, I finally could move the pen against paper again. Then it was like trying to learn to write again.
The initial attempts look just like that. I could not even read what I was trying to write. But, now all these years later I can use a pen pencil right handed, for short use anyway. I could never write anything like this document by hand. Even writing out a check at a store I can lose my grip and drop the pen. But, generally I have enough strength to write short things- writing checks or short notes are OK. Much more, and I try to do it on computers and print it out.
Out of the blue, I have this very rare problem that seems to have rendered my right hand almost useless. I say almost, because it was still OK for things that did not require any finesse. I could not pick up a pen, and even if I could pick one up, I could not write at first. It took me a bit of experimentation to find a way to hold a pen, and then a bit of practice to relearn the wrong way to write- simply by moving my entire hand instead of holding the pen, and making use of the finger tips to control making the letters flow.
From earlier posts, I have mentioned that I was constantly keeping my hands and fingers of my right hand in motion. Part of this included trying to hold things with my thumb and index finger. Early on, I was not successful holding anything. I could barely hold my thumb and index finger together tightly enough to do any movement. Over time, this changed and I could get them to hold together and even bring them from the flattened finger pinch back into a more standard O. At that point I started to try that exercise with a pencil between my fingers. My doctors all thought I would never regain use of my hand without surgery, so I had a lot of incentive to prove them wrong.
I eventually had some return of my index finger movement. Shortly after that, I started to hold the pen or pencils between my index finger and thumb, and with my left hand, I would grab the pencil and move the tip while I tried to keep hold it with my almost useless finger tips. Over time, I could hold on with more strength. On occasion I would try to hold the pencil or pen down against paper. Usually, this action caused one thing to happen. That would be the pen or pencil flipping away from me. Eventually, I could hold the pen in contact with the paper, and I would try the next step; to move the pen against paper. And of course, that would flip the pen out of my hand. After a while doing this, and also trying to hold the pen as my left hand pushed and pulled it, I finally could move the pen against paper again. Then it was like trying to learn to write again.
The initial attempts look just like that. I could not even read what I was trying to write. But, now all these years later I can use a pen pencil right handed, for short use anyway. I could never write anything like this document by hand. Even writing out a check at a store I can lose my grip and drop the pen. But, generally I have enough strength to write short things- writing checks or short notes are OK. Much more, and I try to do it on computers and print it out.
Tuesday, June 9, 2009
Pushup Update, Updated
Just for those who are interested in how this impacts strength at any given time, I have another update. Earlier I mentioned I had worked up to ten pushups again, after not being able to do even one for well over a year. I tried again the very next day, and I had trouble finishing ten. I tried again after a couple of days, and I was back down to two. This is a bit odd to me, but I guess that is the way NA works? It seems you can only get back to a set amount of muscle use after the loss of that use, and then the muscle gets so fatigued after a couple of days of that exercise that it drops back down again to prior levels? Here I thought maybe my strength was returning a bit, but now it seems like it is back to almost as low as it ever was. I am not sure this is the normal progression in cases like this, but it is what I am seeing in my own case.
Monday, June 8, 2009
This is a summary of how my injury impacts everyday life
Starting with sleep, this is an all the time thing. I seem to wake up every couple of hours to change positions. This is generally from my back to one side or the other. If I am on my back too long, my right arm starts to go numb. If I am on my left side too long, my right arm also goes numb. This numbness starts in the hand. It can be both my thumb and index finger first, or from my ring finger to little finger. Usually, this is only a few times per month. But recently, I have had nights where I woke up three times in the same night with numbness. At times I wake up with pain in my shoulder blade area, or pain in my lower arm.
Upon waking up for good, and getting dressed, I have to be aware at all times that my right arm acts like it is dislocated. This is especially true when putting on a pullover type shirt. I have to treat my right arm with care at all times, or it reminds me. My right shoulder pops and clicks at most movements doing this, and pulling up pants or other clothes.
Sneezing and/or coughing if I am not braced for it can lead to jabs of pain in my right scapula, and leave me with pain radiating down my right arm. Luckily, my coughs have been of short duration recently. Sneezing is another matter. Certain times of the year I tend to sneeze more than others, and each one of these can recoil in my shoulder causing pain no matter how I try to brace for them.
I have to bend my head down to wash my hair. I sometimes have trouble holding my toothbrush tightly enough, depending on the design of the handle. Lifting my arm too high causes pain on the shoulder. Because of this, I tend to do these activities very quickly to minimize the arm loads.
As with all things I have to do with my right hand, I tend to drop things if I am not constantly mindful that my overall grip strength and strength in my right arm is impacted by this.
Preparations of things in the kitchen are impacted. This is especially important. I have trouble with using knives to slice anything. I have to use my left arm to reach anything on higher shelves. For the things I can do right handed, I still have to use my left hand to provide support. This is true of most things. One example is use of a coffee maker. I can barely hold the full pot long enough to use it, and have to support my right arm to steady it, or it will shake so much that I will spill or drop the entire thing. The only way I can hold a full pot is to steady my upper arm (from shoulder to elbow) against the side of my body. I cannot extend or lift the pot without support of my left hand. Even with the support, my wrist aches at this time. I have to ask for help cutting things with a knife because of pain in my right wrist from having to grasp the knife.
Eating is also impacted. I have been known to have the utensil slip out of my right hand during use.
Completing odd jobs around the house is impacted. If I can keep my upper arm tight against my right side, I am better off, but how many jobs around the house allow that? As an example, I had to change a component in part of our alarm system. This required use of my right arm extended to the wall on which the item was mounted, flipping off a cover, removing two screws and a circuit board, replacing the new circuit board, putting the screws back, and putting the cover back on. In the old pre shoulder injury days, this would have been a ten minute job. This time took me 30 minutes, and at the end my upper shoulder and neck was tense and sore, and I had a headache. The reason I think was that loss of my right hand dexterity caused extra time to be spent fumbling at this simple task. This caused me to keep my arm extended longer than I was able to without discomfort.
Projecting this to other jobs around the house, I have to think of ways to do everything with minimal right arm involvement. And, with all things, I have to constantly be aware of how I can do anything without dependence on my right arm, and hand. I have a three pound dumb-bell that I try to lift right handed. Using my biceps with arm close to my side may work for that, but if I try to lift it by extending my arm away from my body, I have trouble. Jobs requiring this type of movement or extension are hard to accomplish.
Shopping, I also have troubles reaching items on higher shelves. I use my left arm for that. Sometimes I forget my right hand is not as strong as it used to be. I grab a carton of orange juice. Next thing I know, it is on the floor.
Driving is impacted. Sitting against a high seat with a winged scapula tends to make me sit a bit lop-sided. Sitting in any chair with a back can also cause this. It tends to make me twisted no matter how I sit, and I think this adjustment may be one extra cause of my headaches. I may not get the headache until later, but sitting while having arms extended to do simple tasks can lead to headaches.
Steering while driving is something I tend to do more left handed than before. I try to keep my right hand on the wheel, but it is not the one I depend on to do hard steering, like getting in and out of parking places, etc. Without power steering, I would be unable to drive safely at this point. Using my right arm leads to pain at shoulder. Looking over my right shoulder causes pain in my neck. Quick movements driving lead to jabs of pain.
All considered, there is not one thing I do daily in which I can take it for granted that my right arm and hand will function anywhere near a level prior to injury. If I forget, I drop things. It is a constant reminder of my injury and how I must adapt to do even simple tasks.
Upon waking up for good, and getting dressed, I have to be aware at all times that my right arm acts like it is dislocated. This is especially true when putting on a pullover type shirt. I have to treat my right arm with care at all times, or it reminds me. My right shoulder pops and clicks at most movements doing this, and pulling up pants or other clothes.
Sneezing and/or coughing if I am not braced for it can lead to jabs of pain in my right scapula, and leave me with pain radiating down my right arm. Luckily, my coughs have been of short duration recently. Sneezing is another matter. Certain times of the year I tend to sneeze more than others, and each one of these can recoil in my shoulder causing pain no matter how I try to brace for them.
I have to bend my head down to wash my hair. I sometimes have trouble holding my toothbrush tightly enough, depending on the design of the handle. Lifting my arm too high causes pain on the shoulder. Because of this, I tend to do these activities very quickly to minimize the arm loads.
As with all things I have to do with my right hand, I tend to drop things if I am not constantly mindful that my overall grip strength and strength in my right arm is impacted by this.
Preparations of things in the kitchen are impacted. This is especially important. I have trouble with using knives to slice anything. I have to use my left arm to reach anything on higher shelves. For the things I can do right handed, I still have to use my left hand to provide support. This is true of most things. One example is use of a coffee maker. I can barely hold the full pot long enough to use it, and have to support my right arm to steady it, or it will shake so much that I will spill or drop the entire thing. The only way I can hold a full pot is to steady my upper arm (from shoulder to elbow) against the side of my body. I cannot extend or lift the pot without support of my left hand. Even with the support, my wrist aches at this time. I have to ask for help cutting things with a knife because of pain in my right wrist from having to grasp the knife.
Eating is also impacted. I have been known to have the utensil slip out of my right hand during use.
Completing odd jobs around the house is impacted. If I can keep my upper arm tight against my right side, I am better off, but how many jobs around the house allow that? As an example, I had to change a component in part of our alarm system. This required use of my right arm extended to the wall on which the item was mounted, flipping off a cover, removing two screws and a circuit board, replacing the new circuit board, putting the screws back, and putting the cover back on. In the old pre shoulder injury days, this would have been a ten minute job. This time took me 30 minutes, and at the end my upper shoulder and neck was tense and sore, and I had a headache. The reason I think was that loss of my right hand dexterity caused extra time to be spent fumbling at this simple task. This caused me to keep my arm extended longer than I was able to without discomfort.
Projecting this to other jobs around the house, I have to think of ways to do everything with minimal right arm involvement. And, with all things, I have to constantly be aware of how I can do anything without dependence on my right arm, and hand. I have a three pound dumb-bell that I try to lift right handed. Using my biceps with arm close to my side may work for that, but if I try to lift it by extending my arm away from my body, I have trouble. Jobs requiring this type of movement or extension are hard to accomplish.
Shopping, I also have troubles reaching items on higher shelves. I use my left arm for that. Sometimes I forget my right hand is not as strong as it used to be. I grab a carton of orange juice. Next thing I know, it is on the floor.
Driving is impacted. Sitting against a high seat with a winged scapula tends to make me sit a bit lop-sided. Sitting in any chair with a back can also cause this. It tends to make me twisted no matter how I sit, and I think this adjustment may be one extra cause of my headaches. I may not get the headache until later, but sitting while having arms extended to do simple tasks can lead to headaches.
Steering while driving is something I tend to do more left handed than before. I try to keep my right hand on the wheel, but it is not the one I depend on to do hard steering, like getting in and out of parking places, etc. Without power steering, I would be unable to drive safely at this point. Using my right arm leads to pain at shoulder. Looking over my right shoulder causes pain in my neck. Quick movements driving lead to jabs of pain.
All considered, there is not one thing I do daily in which I can take it for granted that my right arm and hand will function anywhere near a level prior to injury. If I forget, I drop things. It is a constant reminder of my injury and how I must adapt to do even simple tasks.
Friday, June 5, 2009
Push-up Update
Today I did 10 push-ups, but it feels like this is the plateau for now. This is starting to feel familiar. I work up to a plateau, and then can go no further. Last time, my weakness returned about now. Maybe this time I can maintain at 10 – well, no fewer than 10 anyway.
Wednesday, June 3, 2009
Do not give in to it
One thing to remember with this is that you should never give in to it completely. If you feel weak, and it seems strength is never going to improve, just try again another day. Part of dealing with this is that the muscles may stop completely for a time, and ones you have left may fatigue easily. This can lead you to believe that you are destined for complete paralysis. And, if you give in to it, and stop trying, you may as well be paralyzed. I know of at least one case of what had been diagnosed as Brachial Plexus Neuritis where the individual had such pain that they stopped trying to move the impacted arm at all. Last I heard, he could not move it at all, and there was talk of amputation. I should say here that I have never met this person, and they may have other stuff going on in their life that is impacting this. And, the diagnosis I know of may not actually be correct. But, it does serve to illustrate my point, which is that you should keep trying to move, even when all logic tells you that it will not improve things.
I think that the only reason I can move the thumb and index finger of my right hand at all today, is that I never stopped moving them, or trying to move them, even though the expert doctors I had at the time told me that the only way I would regain movement would have been to have tendon transfer surgery. I know that if I had stopped moving my fingers, just outright stopped trying to use my right hand, that those doctors would have been correct. I would then have needed surgery of some kind.
When I had the more recent flare-up that lead to the winging of my right scapula, no one ever mentioned surgery as being anywhere in the future. But, they also did not tell me how profound the weakness in my arms would eventually become, or how long that would last.
My winging scapula happened in Oct of 2006. At that time, I could barely do a push-up standing against a perpendicular surface. By December, I could do 20 standard push-ups on the floor. At that point, I thought this would be a minimal impact to me. When I tried in mid January, I could only do 15. Two weeks later, I could only do 10. Next time I tried, I could not push myself off the floor at all. For the next year or so, I tried every day to do push-ups at a 45 degree angle off of a desk at work. I slowly worked up to where I could do 20 or so of those. Then suddenly, I started to feel very weak and fatigued after those attempts. My arms would just start to shake. Notice, both arms were shaking. At this point, there was no thought that this could be impacting my other arm. Gradually, my total numbers in each session dropped off just as they had initially, and finally I could not do one push-up even at 45 degrees on that desk, and my arms and/or hands were shaking at the least exertion.
Now going on 3 years into the second bout of this, I was ready to give it up. I was weak, and I felt like it would be like this forever. But a day or so ago, I tried again to do a real pushup from the floor. I could do one- for the first time in a couple of years. Today, I did 5. My lower back and shoulders are killing me. My right hand feels like it will fall off at my wrist for some reason. But, I could do some push-ups. Maybe other small returns are also possible.
I think that the only reason I can move the thumb and index finger of my right hand at all today, is that I never stopped moving them, or trying to move them, even though the expert doctors I had at the time told me that the only way I would regain movement would have been to have tendon transfer surgery. I know that if I had stopped moving my fingers, just outright stopped trying to use my right hand, that those doctors would have been correct. I would then have needed surgery of some kind.
When I had the more recent flare-up that lead to the winging of my right scapula, no one ever mentioned surgery as being anywhere in the future. But, they also did not tell me how profound the weakness in my arms would eventually become, or how long that would last.
My winging scapula happened in Oct of 2006. At that time, I could barely do a push-up standing against a perpendicular surface. By December, I could do 20 standard push-ups on the floor. At that point, I thought this would be a minimal impact to me. When I tried in mid January, I could only do 15. Two weeks later, I could only do 10. Next time I tried, I could not push myself off the floor at all. For the next year or so, I tried every day to do push-ups at a 45 degree angle off of a desk at work. I slowly worked up to where I could do 20 or so of those. Then suddenly, I started to feel very weak and fatigued after those attempts. My arms would just start to shake. Notice, both arms were shaking. At this point, there was no thought that this could be impacting my other arm. Gradually, my total numbers in each session dropped off just as they had initially, and finally I could not do one push-up even at 45 degrees on that desk, and my arms and/or hands were shaking at the least exertion.
Now going on 3 years into the second bout of this, I was ready to give it up. I was weak, and I felt like it would be like this forever. But a day or so ago, I tried again to do a real pushup from the floor. I could do one- for the first time in a couple of years. Today, I did 5. My lower back and shoulders are killing me. My right hand feels like it will fall off at my wrist for some reason. But, I could do some push-ups. Maybe other small returns are also possible.
Monday, June 1, 2009
Neuralgic Amyotrophy updated
As it turned out, my neurologist did not get the link to the Vitiligo and HNA being located on the same chromosome- or if he did, he did not mention it in the final report. It would have thrown a monkey wrench into his argument as to a cause for my problems. It is something I am still wondering about though.
One further thing of interest that he mentioned- actually two things now that I remember it- First, he thinks that my current problem with the right scapula is a later flare-up of the first problem that had been diagnosed as Anterior Interosseous Nerve Syndrome. He says that in cases he has seen with both problems, the hand issue preceded the later involvement with the shoulder.
He also said that in cases of PTS or AN- that 30% of time you will see bilateral involvement. So in all those websites that imply it is just on the right, remember that while it might well be “mostly” one-sided, in around 30% of the cases, it may be bilateral to a varying degree. In my case, I do not have winging on the left as I do on the right, but the weakness on the left is just as severe as on the right. I do not have the history of paralysis of my thumb and index finger on the left hand as I do on the right, but I do have a weakness and slow response for fine motor control on the left hand just as I do on the right.
Then, also keep in mind that there is more than one nerve plexus that could be impacted. I have definite bilateral involvement of the brachial plexus (shoulders and upper body.) I also have suspected involvement of the lumbar-sacral plexus (lower body and legs) based on the inconsistent reflexes and certain symptoms I have noticed over the last few years. There is also the cervical plexus (head and face- also frenic nerve to diaphragm) to be concerned with. He did not say directly that I have involvement with that, but I wonder if he thinks I did because of the questions he asked me.
This may be more involved than you have been lead to believe. If you have symptoms that the doctors are ignoring, be insistent. Make them explain the symptoms, or get to a new doctor. Again, if it is only Neuralgic Amyotrophy you are dealing with, it may not be life threatening. But, there are other things out there that are similar. Make sure your doctors rule those things out before you settle on the diagnosis.
One further thing of interest that he mentioned- actually two things now that I remember it- First, he thinks that my current problem with the right scapula is a later flare-up of the first problem that had been diagnosed as Anterior Interosseous Nerve Syndrome. He says that in cases he has seen with both problems, the hand issue preceded the later involvement with the shoulder.
He also said that in cases of PTS or AN- that 30% of time you will see bilateral involvement. So in all those websites that imply it is just on the right, remember that while it might well be “mostly” one-sided, in around 30% of the cases, it may be bilateral to a varying degree. In my case, I do not have winging on the left as I do on the right, but the weakness on the left is just as severe as on the right. I do not have the history of paralysis of my thumb and index finger on the left hand as I do on the right, but I do have a weakness and slow response for fine motor control on the left hand just as I do on the right.
Then, also keep in mind that there is more than one nerve plexus that could be impacted. I have definite bilateral involvement of the brachial plexus (shoulders and upper body.) I also have suspected involvement of the lumbar-sacral plexus (lower body and legs) based on the inconsistent reflexes and certain symptoms I have noticed over the last few years. There is also the cervical plexus (head and face- also frenic nerve to diaphragm) to be concerned with. He did not say directly that I have involvement with that, but I wonder if he thinks I did because of the questions he asked me.
This may be more involved than you have been lead to believe. If you have symptoms that the doctors are ignoring, be insistent. Make them explain the symptoms, or get to a new doctor. Again, if it is only Neuralgic Amyotrophy you are dealing with, it may not be life threatening. But, there are other things out there that are similar. Make sure your doctors rule those things out before you settle on the diagnosis.
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