Here is the site.
They are doing research on HNA and a few other genetic diseases. I have cited web pages before with previous research done by Drs Hannibal and Chance.
Thursday, July 30, 2009
Friday, July 24, 2009
More on “The clinical spectrum of neuralgic amyotrophy in 246 cases”
There is an awful lot to absorb in The clinical spectrum of neuralgic amyotrophy in 246 cases .
My last main attack happened in Oct of 2006. In Nov of 2008, I had a sudden episode of blurry vision. By the time of my appointment to have this checked out, my vision had started to return to normal, and by the time my new glasses were ready, it was fine- and that particular prescription was never quite right for me. During the exam, the doctor found that one eye had pretty high intraocular pressure, and the other was a bit higher than what is considered normal. After a range of eye tests, and rechecks of my eye pressure, it was determined that I had glaucoma. When I asked specifically if the blurry vision was related to this, they said it was not. What was it then? No one has told me. But, it was the reason I went to the doctor only four months or so after my last most recent exam showed I had no problems.
What did I do? I assumed my previous eye doctor had messed up somehow, and not noticed my pressure had been increasing- or if they had noticed, that they did not tell me to watch it. I went back to them and got a print of my eye pressure readings over the last five years. It showed that the pressure was normal until 2006, and then started a slow rise with a peak in early 2008. The cause overall is not really known, but there are certain population groups that are statistically more likely to develop it in their lifetime. I was not in one of those groups. Why did I get it? Just lucky I guess.
Of course, one thing I thought of immediately was if NA or HNA could increase the chance I would develop some other disease, like glaucoma. I could not find, and still have not found any study or site that suggests a link. Blurry vision can be an early indication of up to 774 medical conditions according to Wrongdiagnosis.com, including glaucoma. Hmm. Maybe I need a new eye doctor too. Anyway, the one I was thinking of considering my other problems was optical neuritis, which can be a precursor to Multiple Sclerosis. Optical neuritis usually only causes blurred vision in one eye, and both of mine were blurred, so maybe something else was going on? But, was it was a stretch to think that a neurologic problem that caused a shoulder to go bad could also cause an eye problem? Since then, I have learned a lot about this particular problem though. It is never as simple as just saying that because the main complaint of those with NA is that they have right shoulder problems it means that any problems they have will be restricted to that area. As this study referenced shows, it can pretty much impact any nerve group any place. They say there is “no significant difference in clinical characteristics between INA and HNA patients, except for the age of onset and the total number of attacks, and possibly for the involvement of nerves outside the distribution of the brachial plexus, such as the phrenic, lumbosacral plexus, intercostals or cranial nerves, which has mainly been reported in HNA (van Alfen et al., 2000 )”.
I am not sure about the intercostals involvement, but that reference to cranial nerves jumped out at me. This is because the second cranial nerve is the optic nerve, and that may provide me the link I have searched for. If HNA/NA can involve the cranial nerves, it is not a real big stretch to think that it may have been the underlying cause for my case of glaucoma. Because if you look at the eye pressures I had as tested, they are about normal before Oct 2006, and then they start to climb. My blurred vision episode had been preceded by periods of eye pain, and tearing. Blurred vision can be a symptom of glaucoma.
I am curious if anyone else out there with HNA or NA has had vision problems.
My last main attack happened in Oct of 2006. In Nov of 2008, I had a sudden episode of blurry vision. By the time of my appointment to have this checked out, my vision had started to return to normal, and by the time my new glasses were ready, it was fine- and that particular prescription was never quite right for me. During the exam, the doctor found that one eye had pretty high intraocular pressure, and the other was a bit higher than what is considered normal. After a range of eye tests, and rechecks of my eye pressure, it was determined that I had glaucoma. When I asked specifically if the blurry vision was related to this, they said it was not. What was it then? No one has told me. But, it was the reason I went to the doctor only four months or so after my last most recent exam showed I had no problems.
What did I do? I assumed my previous eye doctor had messed up somehow, and not noticed my pressure had been increasing- or if they had noticed, that they did not tell me to watch it. I went back to them and got a print of my eye pressure readings over the last five years. It showed that the pressure was normal until 2006, and then started a slow rise with a peak in early 2008. The cause overall is not really known, but there are certain population groups that are statistically more likely to develop it in their lifetime. I was not in one of those groups. Why did I get it? Just lucky I guess.
Of course, one thing I thought of immediately was if NA or HNA could increase the chance I would develop some other disease, like glaucoma. I could not find, and still have not found any study or site that suggests a link. Blurry vision can be an early indication of up to 774 medical conditions according to Wrongdiagnosis.com, including glaucoma. Hmm. Maybe I need a new eye doctor too. Anyway, the one I was thinking of considering my other problems was optical neuritis, which can be a precursor to Multiple Sclerosis. Optical neuritis usually only causes blurred vision in one eye, and both of mine were blurred, so maybe something else was going on? But, was it was a stretch to think that a neurologic problem that caused a shoulder to go bad could also cause an eye problem? Since then, I have learned a lot about this particular problem though. It is never as simple as just saying that because the main complaint of those with NA is that they have right shoulder problems it means that any problems they have will be restricted to that area. As this study referenced shows, it can pretty much impact any nerve group any place. They say there is “no significant difference in clinical characteristics between INA and HNA patients, except for the age of onset and the total number of attacks, and possibly for the involvement of nerves outside the distribution of the brachial plexus, such as the phrenic, lumbosacral plexus, intercostals or cranial nerves, which has mainly been reported in HNA (van Alfen et al., 2000 )”.
I am not sure about the intercostals involvement, but that reference to cranial nerves jumped out at me. This is because the second cranial nerve is the optic nerve, and that may provide me the link I have searched for. If HNA/NA can involve the cranial nerves, it is not a real big stretch to think that it may have been the underlying cause for my case of glaucoma. Because if you look at the eye pressures I had as tested, they are about normal before Oct 2006, and then they start to climb. My blurred vision episode had been preceded by periods of eye pain, and tearing. Blurred vision can be a symptom of glaucoma.
I am curious if anyone else out there with HNA or NA has had vision problems.
Wednesday, July 22, 2009
The clinical spectrum of neuralgic amyotrophy in 246 cases
I think I may have cited web pages that refer to this study in the past, but this link I have added goes to the main study results where before I may have only been able to find the abstract to the study. Click here for the complete listing-
This study was quite extensive as are the results in the web page, and is worth looking into if you are a NA/HNA sufferer. I will leave a link to the pages out to the right in my links section.
This study was quite extensive as are the results in the web page, and is worth looking into if you are a NA/HNA sufferer. I will leave a link to the pages out to the right in my links section.
Monday, July 20, 2009
That’s funny, you do not look sick. . .
Related to this, see my link to the right for “Spoon Theory- Funny, you don’t look sick. . . “
You know, one thing about NA/HNA is that because the expression of the symptoms can vary so much, it is hard to really for someone else to see that it is impacting your life. In fact, just to look at me, unless you were a trained health professional, you may not be able to tell I had anything wrong unless I took my shirt off, and you saw my scapula were not right. And even if you were a health professional, you may miss it.
In my previous entry I described how doing relatively easy “work” for an hour impacted me and my arms and hands. That shaking was real to me, and it is really one of the few outward signs that I have of this “disease” that others may be able to see. Yet, even though others may know I have this condition, and they see it manifest in this manner, they still make comments like, “Oh, you are a weekend warrior- I guess you must be a bit out of shape.” Well, yes I am no doubt a bit out of condition right now, but it this shaking is not due to being a weekend warrior in the garden. “Well, look at that, I am out of shape too- See how my hand is shaking too?” Yes. But the difference is that my hand was shaking before I started to work out here, and at this point, I am not sure I will be ever to ever get back into a condition where my hands to not shake. It may be true that your hands shake a bit after doing too much work- but my hands shake all the time. It does not matter if it is picking up a paper cup of coffee at Starbucks, or after working out in the yard for an hour. My hands will shake. In fact, I can wake up in the middle of the night when all I have been doing is sleeping, and if I reach for the covers with my left hand, it will shake.
Well, I can’t complain too much about this. The other person spoken about here does not want me to think of myself as being different than I have ever been. And, I do not want to roll over and let the condition take the rest of my life away by acknowledging that since I started to express certain symptoms, I can’t do this, I can’t do that. Sure, there are certain things that I do not feel comfortable doing now. But, I can still do a lot. It is just that doing some things takes it out of me in a different way than it used to. Doing this job of edging the perimeter of the lawn used to be a job I could do with no problem. Then I would go on and do the next thing, and the next thing, etc. Now, doing the perimeter edging is it for the day. After that, I am done. And if there was a job I got to before I tried the edging, it may be that only part of the edging will be done, or if it is completed, I will be done for a bit longer. I am learning that there are limits to what I can do anymore, and I do not like it. Sure, I am getting older and maybe there would have been age related limits at this point anyway. But, I am getting those too. It doesn’t seem fair.
But, I know there are younger people learning that they have NA/HNA every day. At least I did not develop symptoms until I was in my mid 40’s. I know of a family who has a young child who has had two attacks already, and has bilateral winged scapulas at around age 10. I think of him and realize I really should not complain about my lot. I guess I am lucky I do not have worse going on with my health.
You know, one thing about NA/HNA is that because the expression of the symptoms can vary so much, it is hard to really for someone else to see that it is impacting your life. In fact, just to look at me, unless you were a trained health professional, you may not be able to tell I had anything wrong unless I took my shirt off, and you saw my scapula were not right. And even if you were a health professional, you may miss it.
In my previous entry I described how doing relatively easy “work” for an hour impacted me and my arms and hands. That shaking was real to me, and it is really one of the few outward signs that I have of this “disease” that others may be able to see. Yet, even though others may know I have this condition, and they see it manifest in this manner, they still make comments like, “Oh, you are a weekend warrior- I guess you must be a bit out of shape.” Well, yes I am no doubt a bit out of condition right now, but it this shaking is not due to being a weekend warrior in the garden. “Well, look at that, I am out of shape too- See how my hand is shaking too?” Yes. But the difference is that my hand was shaking before I started to work out here, and at this point, I am not sure I will be ever to ever get back into a condition where my hands to not shake. It may be true that your hands shake a bit after doing too much work- but my hands shake all the time. It does not matter if it is picking up a paper cup of coffee at Starbucks, or after working out in the yard for an hour. My hands will shake. In fact, I can wake up in the middle of the night when all I have been doing is sleeping, and if I reach for the covers with my left hand, it will shake.
Well, I can’t complain too much about this. The other person spoken about here does not want me to think of myself as being different than I have ever been. And, I do not want to roll over and let the condition take the rest of my life away by acknowledging that since I started to express certain symptoms, I can’t do this, I can’t do that. Sure, there are certain things that I do not feel comfortable doing now. But, I can still do a lot. It is just that doing some things takes it out of me in a different way than it used to. Doing this job of edging the perimeter of the lawn used to be a job I could do with no problem. Then I would go on and do the next thing, and the next thing, etc. Now, doing the perimeter edging is it for the day. After that, I am done. And if there was a job I got to before I tried the edging, it may be that only part of the edging will be done, or if it is completed, I will be done for a bit longer. I am learning that there are limits to what I can do anymore, and I do not like it. Sure, I am getting older and maybe there would have been age related limits at this point anyway. But, I am getting those too. It doesn’t seem fair.
But, I know there are younger people learning that they have NA/HNA every day. At least I did not develop symptoms until I was in my mid 40’s. I know of a family who has a young child who has had two attacks already, and has bilateral winged scapulas at around age 10. I think of him and realize I really should not complain about my lot. I guess I am lucky I do not have worse going on with my health.
Sunday, July 19, 2009
Just when I thought it was safe to go back into the garden. . .
I have tried to take it easy doing manual labor type stuff around the yard, but sometimes there are things you just have to do. So, I have tried to do some pruning and other light work that minimizes shoulders and arms. I have done pretty well at my few attempts at yard work. If it is too heavy, I know right away to stay away from lifting it. Then, there is the simple task of edging the perimeter of the lawn with a weed whacker. It is simple if you have normal upper body strength and no neurologic difficulties.
The weed whacker is only a few pounds, so it s well under my weight limits, and I am not lifting it over my head, so that is all within my restrictions. And for the first little while I am fine. I do not feel that I am hurting anything. It involves a period of time- maybe a bit over an hour- of holding the main handle with the left hand while holding down the power button with the right. I try a few fingers on the right and end up using my middle finger. All feels fine. Sure I can tell I am getting more tired as I go. My upper back starts to feel like it normally does after doing a posture like this for a while. I still do not feel anything out of the ordinary as far as my shoulders or arms go.
Then I stop.
I about dropped the thing to the grass, my hands had such bad tremors. I went over to pull the plug from the main power outlet, and I only had to grasp it. My shaking hand did the rest. I lifted my left hand to brush my hair out of my eyes (my left seems to be the worse off as far as this type of tremor goes) and I had trouble even getting it up to my face. My entire arm was shaking, and my hand seemed to be going on its own. Even trying to rest, it took a bit of concentration to let them rest enough to stop the shaking.
Even an hour later as I type this, it is not as easy as it usually is to type correctly. It is funny that the last few days I had started to believe I may not really have anything wrong with me after all. At least nothing as bad as I had worried anyway. It all seemed to be getting better. Then I had to go and push it a bit harder than I should have.
The weed whacker is only a few pounds, so it s well under my weight limits, and I am not lifting it over my head, so that is all within my restrictions. And for the first little while I am fine. I do not feel that I am hurting anything. It involves a period of time- maybe a bit over an hour- of holding the main handle with the left hand while holding down the power button with the right. I try a few fingers on the right and end up using my middle finger. All feels fine. Sure I can tell I am getting more tired as I go. My upper back starts to feel like it normally does after doing a posture like this for a while. I still do not feel anything out of the ordinary as far as my shoulders or arms go.
Then I stop.
I about dropped the thing to the grass, my hands had such bad tremors. I went over to pull the plug from the main power outlet, and I only had to grasp it. My shaking hand did the rest. I lifted my left hand to brush my hair out of my eyes (my left seems to be the worse off as far as this type of tremor goes) and I had trouble even getting it up to my face. My entire arm was shaking, and my hand seemed to be going on its own. Even trying to rest, it took a bit of concentration to let them rest enough to stop the shaking.
Even an hour later as I type this, it is not as easy as it usually is to type correctly. It is funny that the last few days I had started to believe I may not really have anything wrong with me after all. At least nothing as bad as I had worried anyway. It all seemed to be getting better. Then I had to go and push it a bit harder than I should have.
Wednesday, July 8, 2009
short update
Well, I have not got much of an update at this point. It is interesting to me at least, that in a search for new information I could pass on out here, a search in Google brought up my own blog entries a number of times.
I had been doing pretty well recently as far as staying pain free. That ended last night with a sneeze. This was noteworthy because it popped my left shoulder in the area of my scapula. I do have slight winging on that side, so I am increasingly nervous about any new pain related to my left side in that area. Of course, no good sneeze anymore only jerks one part of my body. For the rest of the night, my neck and upper shoulders on both sides were very sore. I am not suggesting the sneeze as a cause of any ongoing problem, but it sure shows how something so simple can irritate an existing weakness.
Long before I noticed any problem with my right shoulder, I remember waking up on my right side in time to notice a POP in my shoulder that was followed by a noticeable settling. So, who knows? Maybe a sneeze could be the final thing that starts a new attack. I mean, I had been sleeping on my right side like that as long as I can remember, and have had no trouble. But with a slightly weakened shoulder, that pop could have been the start of that attack for me. Sites seem to suggest that exercise can bring on an attack. Maybe something as innocuous as a sneeze or simply sleeping could do it also.
I had been doing pretty well recently as far as staying pain free. That ended last night with a sneeze. This was noteworthy because it popped my left shoulder in the area of my scapula. I do have slight winging on that side, so I am increasingly nervous about any new pain related to my left side in that area. Of course, no good sneeze anymore only jerks one part of my body. For the rest of the night, my neck and upper shoulders on both sides were very sore. I am not suggesting the sneeze as a cause of any ongoing problem, but it sure shows how something so simple can irritate an existing weakness.
Long before I noticed any problem with my right shoulder, I remember waking up on my right side in time to notice a POP in my shoulder that was followed by a noticeable settling. So, who knows? Maybe a sneeze could be the final thing that starts a new attack. I mean, I had been sleeping on my right side like that as long as I can remember, and have had no trouble. But with a slightly weakened shoulder, that pop could have been the start of that attack for me. Sites seem to suggest that exercise can bring on an attack. Maybe something as innocuous as a sneeze or simply sleeping could do it also.
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