Guest guest Posted May 8, 2006 Report Share Posted May 8, 2006 OK, I am asking ?? regarding my husband...... He was first dx with HSP. Had it since he was 12, undx until age 29. Things fell into place with the right kind of docs and he was then dx. He has started having more symptoms. He has done the baclofen for about 3-4 years now. He went on that because he kept falling, and was having trouble going to the bathroom. Now he has had some vision problems, then swallowing problems, more so in his esophagus, now in his throat, and the breathing problems. Like not getting enough air, or having to work at taking a breath. (like what the " PLS " groups has been discussing) His dx changed a few weeks ago to PLS. But in my research, he didn't fit the age bracket. It was tough to know this disease would affect his whole body. We went through some tough times. Then last Thur he went in for an EMG. It showed he has carpal tunnel in both arms, which he has had for years. And the doc only did one leg. It showed that one nerve is disconnected from one of his muscles. He couldn't get a reading on that nerve. So he will have a spinal MRI to see if he has a pinched nerve in his back. So here are my questions as of right now....His Dx went back to HSP because of the age factor. But all of his symptoms don't fit with that either. It is frustrating wondering what is going on. He has symptoms of HSP, PLS, ALS, Ataxia, MS......How can he be treated when it could be any one of these? I believe he also ruled out that it is just his primary nervous system being attacked. Which is good for ALS at least. Has anyone had HSP, and it evolved into one of the other diseases listed above? Is that possible? I just would love to know what to expect, deal with it all at one time, and then can move on. It is very hard for me to deal with one dx or symptom. Then feel find again, and boom another dx, or symptom arises. I know much of what is experienced with these diseases is so much different for everyone. I just don't think that he has one certain disease without a doubt. He just started seeing a new neuro. He is very well educated, but not necc. on these diseases. In some ways, I feel as if I know more based on the SP Foundation information, and what has been posted to this group..... OK, can anyone calm my mind??? Ü Also, he is having an Evoked Potential tomorrow. Tell me that is better than the EMG. And what difference will it tell us verses the EMG? His swallow test, and breathing test came back fine. I am printing off the PLS side discussion and bringing it to his physiatrist on Friday. I believe this new phys. for my husband, son has HSP. So it will be interesting to get new information from him. Maybe hopefully he will have answers for us..... Thanks for any and all responses.....feel free to e-mail me privately also. smarklow@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2006 Report Share Posted May 8, 2006 Hi , Try to take a deep breath! the evoked potential test looks for more sensory issues and is a different kind of test from emg. my test was normal despite having had much difficulty losing entire left visual field early in my progression. Much of my symptoms would appear to line up with those diseases you mentioned however as my doc has watched me evolve in past 2 years. Of course MS has been amply ruled out and for grins and giggles, we often will do another mri just to see for sure....many of the symptoms from MS are very similar to PLS so MS is major rule out. In the early times also, doc and i tried to get insurance co. to pay for genetic testing to rule out the ataxias. i have a friend that has freidrich's ataxia and his started about the same age as your husband's. May want to ask for genetic testing if that hasnt' already been done. I am not sure any of us fit into our " classic " symptom set for PLS...perhaps someone has read of cases of childhood onset PLS that can share...i don't know that i have or at least i cannot remember them. In most of the illnesses you listed, there is no real way to know what to expect. That is one of the biggest challenges for everyone involved in the illnesses. I certainly wish I had more control over my progression, but I basically just have to go about my days and when something gets worse, I just have to go with it. What I do know is that PLS is progressive and anything that is progressive will change some aspect of my functioning in the next wave of things. Your frustration and helplessness is so present in your email and I wish I had more to offer you----is there a MDA clinic near you that you could see a doc in that practice that would know about the majority of these illnesses? Try to hang in there and do the best you can.....am so baffled by such a long series of different dx's. We are here for you shannon. Tawny Marklowitz smarklow@...> wrote: OK, I am asking ?? regarding my husband...... He was first dx with HSP. Had it since he was 12, undx until age 29. Things fell into place with the right kind of docs and he was then dx. He has started having more symptoms. He has done the baclofen for about 3-4 years now. He went on that because he kept falling, and was having trouble going to the bathroom. Now he has had some vision problems, then swallowing problems, more so in his esophagus, now in his throat, and the breathing problems. Like not getting enough air, or having to work at taking a breath. (like what the " PLS " groups has been discussing) His dx changed a few weeks ago to PLS. But in my research, he didn't fit the age bracket. It was tough to know this disease would affect his whole body. We went through some tough times. Then last Thur he went in for an EMG. It showed he has carpal tunnel in both arms, which he has had for years. And the doc only did one leg. It showed that one nerve is disconnected from one of his muscles. He couldn't get a reading on that nerve. So he will have a spinal MRI to see if he has a pinched nerve in his back. So here are my questions as of right now....His Dx went back to HSP because of the age factor. But all of his symptoms don't fit with that either. It is frustrating wondering what is going on. He has symptoms of HSP, PLS, ALS, Ataxia, MS......How can he be treated when it could be any one of these? I believe he also ruled out that it is just his primary nervous system being attacked. Which is good for ALS at least. Has anyone had HSP, and it evolved into one of the other diseases listed above? Is that possible? I just would love to know what to expect, deal with it all at one time, and then can move on. It is very hard for me to deal with one dx or symptom. Then feel find again, and boom another dx, or symptom arises. I know much of what is experienced with these diseases is so much different for everyone. I just don't think that he has one certain disease without a doubt. He just started seeing a new neuro. He is very well educated, but not necc. on these diseases. In some ways, I feel as if I know more based on the SP Foundation information, and what has been posted to this group..... OK, can anyone calm my mind??? Ü Also, he is having an Evoked Potential tomorrow. Tell me that is better than the EMG. And what difference will it tell us verses the EMG? His swallow test, and breathing test came back fine. I am printing off the PLS side discussion and bringing it to his physiatrist on Friday. I believe this new phys. for my husband, son has HSP. So it will be interesting to get new information from him. Maybe hopefully he will have answers for us..... Thanks for any and all responses.....feel free to e-mail me privately also. smarklow@... Quote Link to comment Share on other sites More sharing options...
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