Hello,
I haven't posted in awhile and I'm sure many of you wonder why I am now. It may be difficult to follow my situation since I don't post very often. But I am posting because I covet the advice and help from people who really know and from those who have been where I am. Also, I hope that something from my experience may be of help to someone else.
I saw my neuro in February for a follow up visit. I did as Alyoop suggested and wrote down my questions and concerns. The neuro didn't seem real interested in me going down my "list" but I managed to get most of my questions answered throughout the exam.
I asked if what she saw on my right hip was atrophy? She said "yes, and that is why I wanted you to return for this follow up visit." She did another clinical exam doing many of the same things she had done before and some things I didn't remember from before. Don't know for sure if she checked for clonus. She didn't notice any big changes. I asked her if the atrophy would show up on the EMG she had performed and she said no....unless it is caused by nerve damage. Her only explanation for the atrophy was possible redistribution of fat tissue due to weight loss. Thing is I have maintained my weight for several months.
I mentioned the runny nose when eating, etc. That is actually on the checklist of symptoms I filled out for the appointment. She said maybe it will get better after winter...not really.
When she was doing the exam I showed her how if I spread my toes out on my left foot my second and third toe wouldn't stay up...they "wilt" and bend under. She asked me to do it on the other foot. On my right foot the pinkie toe wants to pull back in to the toe bedside it. She said I wouldn't worry about it unless you can't spread your toes at all.
I asked her about the shaking when picking things up...heavy or light, when applying makeup, holding fork etc. legs shaking on tiptoes, etc. and if that was a symptom that came before the "fail". She didn't answer me.
The end result of this visit was suggesting I see a psychiatrist. I opted to go to one in my town rather than travel back to the teaching hospital. It took awhile to get in. I have seen him twice and his psychotherapist twice.
The psychiatrist said I have anxiety and depression, but that didn't necessarily mean there was not a physical issue as well. He seemed knowledgeable about neurological things and would know what I was talking about when I would tell him the tests that had been done, symptoms etc. I told him I couldn't really argue with the EMG results and he said that's not necessarily true if your body has not progressed to the point where things would show up. That was a "chink" in the confidence armor, but don't know if he was really referring to ALS. He adjusted my meds. Increased Lexapro and added clonazepam to help me sleep better. The twitching and jerking have lessened a lot since taking that. Still happens some but much less frequently. He believes my next step should be a rheumatologist. Going back to teaching hospital..appointment in July.
Psychotherapist is giving me things to do to help me cope and get me mind around all this. Still too early to tell if all of this is helping, but I'm trying and doing what she asks. The Lexapro seems to help some days, others not so much. It seems better since they have "tweaked" it a bit. But I have thought that before. Seems that no matter whether the depression is from the anxiety etc or from a disease the med should be helping.
My main concerns now are the atrophy in my right hip and the beginnings I can see in my left hip and the pain in those areas and my lower back. I'm also having more problems with my voice now. Altho I seem to stumble on words some , no one seems to notice slurring. But I am hoarse A LOT and clearing my throat, sometimes after eating, sometimes not. Thick saliva etc. I am concerned that the rheumatologist will not find my symptoms fit any of his "categories" either and I'll be back to square one.
I know this is long again but hopefully I have typed it in such a way that it is easier to read. I truly hope I have offended no one. I know those of you with an ALS diagnosis have days much worse than mine and I cannot truly understand. I know I am not really a member of this community but I think of you often and pray for your comfort and peace.
God Bless,
KITT
I haven't posted in awhile and I'm sure many of you wonder why I am now. It may be difficult to follow my situation since I don't post very often. But I am posting because I covet the advice and help from people who really know and from those who have been where I am. Also, I hope that something from my experience may be of help to someone else.
I saw my neuro in February for a follow up visit. I did as Alyoop suggested and wrote down my questions and concerns. The neuro didn't seem real interested in me going down my "list" but I managed to get most of my questions answered throughout the exam.
I asked if what she saw on my right hip was atrophy? She said "yes, and that is why I wanted you to return for this follow up visit." She did another clinical exam doing many of the same things she had done before and some things I didn't remember from before. Don't know for sure if she checked for clonus. She didn't notice any big changes. I asked her if the atrophy would show up on the EMG she had performed and she said no....unless it is caused by nerve damage. Her only explanation for the atrophy was possible redistribution of fat tissue due to weight loss. Thing is I have maintained my weight for several months.
I mentioned the runny nose when eating, etc. That is actually on the checklist of symptoms I filled out for the appointment. She said maybe it will get better after winter...not really.
When she was doing the exam I showed her how if I spread my toes out on my left foot my second and third toe wouldn't stay up...they "wilt" and bend under. She asked me to do it on the other foot. On my right foot the pinkie toe wants to pull back in to the toe bedside it. She said I wouldn't worry about it unless you can't spread your toes at all.
I asked her about the shaking when picking things up...heavy or light, when applying makeup, holding fork etc. legs shaking on tiptoes, etc. and if that was a symptom that came before the "fail". She didn't answer me.
The end result of this visit was suggesting I see a psychiatrist. I opted to go to one in my town rather than travel back to the teaching hospital. It took awhile to get in. I have seen him twice and his psychotherapist twice.
The psychiatrist said I have anxiety and depression, but that didn't necessarily mean there was not a physical issue as well. He seemed knowledgeable about neurological things and would know what I was talking about when I would tell him the tests that had been done, symptoms etc. I told him I couldn't really argue with the EMG results and he said that's not necessarily true if your body has not progressed to the point where things would show up. That was a "chink" in the confidence armor, but don't know if he was really referring to ALS. He adjusted my meds. Increased Lexapro and added clonazepam to help me sleep better. The twitching and jerking have lessened a lot since taking that. Still happens some but much less frequently. He believes my next step should be a rheumatologist. Going back to teaching hospital..appointment in July.
Psychotherapist is giving me things to do to help me cope and get me mind around all this. Still too early to tell if all of this is helping, but I'm trying and doing what she asks. The Lexapro seems to help some days, others not so much. It seems better since they have "tweaked" it a bit. But I have thought that before. Seems that no matter whether the depression is from the anxiety etc or from a disease the med should be helping.
My main concerns now are the atrophy in my right hip and the beginnings I can see in my left hip and the pain in those areas and my lower back. I'm also having more problems with my voice now. Altho I seem to stumble on words some , no one seems to notice slurring. But I am hoarse A LOT and clearing my throat, sometimes after eating, sometimes not. Thick saliva etc. I am concerned that the rheumatologist will not find my symptoms fit any of his "categories" either and I'll be back to square one.
I know this is long again but hopefully I have typed it in such a way that it is easier to read. I truly hope I have offended no one. I know those of you with an ALS diagnosis have days much worse than mine and I cannot truly understand. I know I am not really a member of this community but I think of you often and pray for your comfort and peace.
God Bless,
KITT