Drewbaby
Member
- Joined
- Sep 26, 2019
- Messages
- 10
- Reason
- Loved one DX
- Diagnosis
- 08/2014
- Country
- US
- State
- TX
- City
- Austin
Hi, first just wanted to thank the members of these forums for taking the time to reach out to those sick/healthy or somewhere in the middle. This past couple months has been difficult, and I can only imagine that it has been for all of you, so taking the time to reach out to people with concerns is extremely selfless, and incredibly appreciated.
so about 3 years ago, I was diagnosed with a rare autoimmune disease called sarcoidosis, thought primarily to affect the lungs, sometimes the eyes, skin or heart. Amongst specialists, (which are few and far apart) sarcoidosis has been recognized as a multi organ disease that can affect almost any area of the body. It has been confirmed in my lungs and on my skin.
a few months ago, I noticed a numb patch of skin on my chest beneath my collarbone. This lasted for weeks, disappeared, and ended up on the other side of my chest for a few weeks. This disappeared as well and moved to the front sides of my shoulders. This also has disappeared. The only other strange thing I’ve noticed during that time was a slightly sore Lima bean sized lump on what appears to be a tendon on the inside of my right elbow near the “funny bone” area. Here’s where my major concerns have come into play:
a little over a month ago; my eyesight took a major dive very suddenly in my left eye, I felt very “not myself” and took myself to the er where a Gallium contrast mri was performed on my brain as well as some reflex/strength tests. End result was my doctor saying nothing was found in my eyes although I had what they considered “mild non specific t1 hyperintensity in the putaminal region of my brain”. I was very concerned about this, although the doctor urged me not to be, as they see things like this in toxic exposure or drinking too much moonshine (I’m in Texas so I guess that’s not uncommon here).
I have been prescribed clonazepam daily since my diagnosis of sarcoidosis and have been taking something called kratom, a legal crushed leaf that produces opiate-like pain killing effects. I also use cannabis to relax, eat and sleep, as the stressors/sarcoidosis in my life have caused me to lose a lot of weight. Id accredit this to choice, as I am the opposite of a stress-eater. I went a long time eating a meal a day If that at all. In other words; I’ve been taking these together for almost 3 years. The kratom does act as a stimulant in small doses. I also until recently had a very high caffeine intake to combat my chronic fatigue.
since my er visit regarding the hyperintensity, I have experienced what I wish wasn’t signs and symptoms of motor neuron disease. I have been catching myself lost in thought mid sentence and transient vision problems. As far as motor function goes; my hands felt very confused for lack of a better word for a little while. I went in my closet and started buttoning shirts and to my dismay, it was a lot more difficult than normal.
following this er visit, I experienced 16 straight days of full body fasiculation, and when I say full body, I mean every muscle in my body that I’m aware of including my tongue. Although I cannot diagnose my hyper reflexes, I believe that they are hyperreflexive; I can tap my pattelar reflex; my knee shoots up in the air; and if repeated, I experience Spasticity, or I think so atleast. At one point I could even tap hard above my knee and experience strong knee jerk. This resulted in my thigh muscles tightening up for hours and leaving me sore; which in turn has made it difficult to tell if I’m experiencing perceived weakness or clinical. I didn’t present clinical weakness during my er visit, but I noticed little things in the past couple months.
I read the forum regarding how our muscles are different, and how different dips etc are a normal part of being a human being. One of my first concerns were the muscles in my right forearm. I seemed to have a very long dip on the inside of my forearm. This arm had experienced weakness and this arm was predominantly the one that had concerned me and still does. The muscle that would be closest to the part of my wrist that runs to my pinky seems smaller than the other, and the seemingly unaffected arm has the slightest bit more muscle in that area. In fact; the right wrist feels like there’s nothing to flex within that inch of what I’d assume would be congruent small muscle.
I know I’m a little bit all over the place here but this is really where my confusion sets in as well as a little glimmer of hope that what I’m going through isn’t the worst case scenario; the 16 day fasiculation saga ended, for almost a week I didn’t, or rather barely experienced fasiculation. The strange weakness in my hands and/or arms (really don’t know where the weakness derived from) “seemed” to have resolved. I was Very relieved.
Shortly after, the fasiculations (some so small they could be unseen, some large enough to create visibility) came back in certain areas of my body, but a lot of it was in my right leg. Just yesterday my right jaw muscle fasiculation lasted all day and night. Just this morning (after a night of testing my own reflexes and developing stiffness into the next day) I got in my car to drive to work and pressing the gas felt slightly labored and tense, although I have felt this before as well followed by another day where my leg felt loose and relaxed. When it does occur, I feel like my kneecap is out of place or my joint is loose.
I will say that I am a very anxious person and I always have been. Single father with a full time job Along with some ptsd from already being diagnosed with a “there’s no way you could have that” type of disease. Anxiety makes the fasiculation worse. So does coffee. Sometimes my little self administered strength tests will cause small fasiculation in the area that I am worried about, for example; I knock my knee with my phone a few times, my leg shoots straight up, stiffness and soreness sets in and I’ll feel a couple twitches. My reflex sensitivity is also transient, as just now I knocked my knee and had what I’d consider a very normal response, not kicking up too high or creating stiffness or spasticity.
One thing i will note about my right leg (the one that felt weak whether it was from Spasticity or real deal weakness) is that I inured it pretty severely about 6 months ago. I crushed my foot; i was in a brace and boot for atleast a month following. The whole leg was pretty messed up, and during that time I recall the feelings of what are very reminiscent of the way people describe fibrillation,very fine and fast, but deep in the leg. I can only describe it as the sound someone makes as they finish a soda out of a straw, but instead of a sound, it’s a feeling. I hope that makes sense to someone. I hope this is indicative that the strong reflex could be from injury, but even in the leg without concern of weakness, I experience fasiculation and what I’d consider to be strong reflex, just no Stiffness.
another concern of mine is that these problems are predominately on my right side regarding the small arm muscle and stiff leg; although I do some strenuous work to some degree. I’m a body piercer in a high volume setting. I do anywhere from 200-250 procedures weekly, in other words, I’m bent over a LOT and my hands are constantly wrapped around small needles, small pieces of jewelry and screwing little tops and gems onto little tiny posts, although I have no back pain and don’t really know if spinal injury can occur painlessly.
I made a post on my sarcoidosis support group asking if any members experience fasiculation/twitches/spasms and/or weakness. I had 88 responses, all of which were along the lines of “yes” or “thank god someone said it, I had full body fasiculation for 2 years” and this made me hopeful that neurosarcoidosis could be the culprit. Not that neurosarcoidosis is a great diagnosis; in fact it has high morbidity rates. It’s just very hard for doctors to detect, some don’t even believe it exists While others say 40% of people living with sarc will encounter it eventually.
I don’t want to come off as a know it all or disrespectful in the least, as I certainly don’t know nearly as much about als or mnd as anyone here; but a huge concern of mine is that a very close friend or mine (who’s probably going to see this post) does have als. He’s one of the very fortunate people walking and talking 5 years post diagnosis and everything I watched him go through is what I feel that I’m going through. I don’t like to talk to him about it, nor does he like to talk about it with me. I’d love to chalk this up to being a hypochondriac but even in a total resting state; I go through these fasiculations and symptoms.
My neurologist won’t see me until a month from today, so unfortunately I let doctor google come into my life. Anything I’ve found regarding hyperintensity in the putamen leads me right to “how to conclusively diagnose multiple system atrophy”. Needless to say that crushed me.
i guess the last thing I’d like to note is that I spent a long time sticking my tongue out for a week. I still have what appears to be little tongue fasiculation but if it’s left completely in my mouth, they don’t “appear”to be there. My concern was that I had a very disorienting headache one day at work and felt my mouth tiring very easily while I spoke and did have some words slur, this lasted a few days, but resolved. I don’t know if this was due to spasticity in my under-jaw muscle or not but I’d like to hope and think it was self-induced by hyper focusing on my tongue and flexing my jaw to see if there were any missing or shrunken muscles in my jaw or neck. I’d also like to hope that the strain and weakness I felt in my right arm and leg were due to the same, in regards to over testing reflex and strenuous work.
Today, I feel pretty normal aside from some fasiculations Here and there in random places and waking up with that stiff leg from stupidly trying to be my own doctor last night and further freaking myself out. tongue and jaw are normal, strength and dexterity feel normal. Right leg softened up and doesn’t feel weird anymore.
as far as the putaminal hyperintensity goes, I really don’t think I can chalk that up to a normal headache or toxicity unless one of my medications or supplements could possibly render such an effect similar to drinking moonshine or huffing paint. Which I really doubt.
In conclusion; I have a pretty complicated situation with my predisposition to sarcoidosis. I’m assuming transient weakness isn’t something that can occur in ALS, although The weakness I’ve encountered was so slight that I don’t really know if it came and went or if I’ve just acclimated to it. All I really know is that muscle weakness/spasticity/fasiculations/atrophy are all hallmark of als. They’re scary. The internet will always point right in the direction of als regarding those 4 symptoms. I see mixed reports of MRI findings regarding als, a lot will say that a clean mri doesn’t mean your clear of als, some will say that there can be putaminal involvement.
Besides my fasiculations and reflexes, all of my symptoms have been “slight” for lack of a better word. I guess what scares me the most is that the fasiculations and brisk reflex are a real occurrence in my leg and my hope that something else might be going on is stemming from the idea that the weakness in my hands that I initially noted seemed to go away, or atleast plateau or become unnoticeable, although I do still feel strain in my forearm if I’m playing kendama (basically a wooden Japanese yo-yo-like toy.
I guess it’s too soon to call it, although Id like to make it clear that I’m not trying to receive a diagnosis here. I’d just like to know if what I’m describing is of concern for als.
I did make a call describing my symptoms to the woman who’s son passed, I believe the organization was called “ALS worldwide” there was a number on the site to reach her with any questions and she told me it sounded like early onset. Also a big week ruined to say the least. This woman is not a doctor nor a sufferer of als although I’m sure she is very knowledgeable. I just wanted to get some insight from those of you who are selfless enough to be on this forum, and I must say again; you are truly selflessly brave and I can’t stress enough how admirable I find it that you are here to help others. Thank you for looking and listening.
so about 3 years ago, I was diagnosed with a rare autoimmune disease called sarcoidosis, thought primarily to affect the lungs, sometimes the eyes, skin or heart. Amongst specialists, (which are few and far apart) sarcoidosis has been recognized as a multi organ disease that can affect almost any area of the body. It has been confirmed in my lungs and on my skin.
a few months ago, I noticed a numb patch of skin on my chest beneath my collarbone. This lasted for weeks, disappeared, and ended up on the other side of my chest for a few weeks. This disappeared as well and moved to the front sides of my shoulders. This also has disappeared. The only other strange thing I’ve noticed during that time was a slightly sore Lima bean sized lump on what appears to be a tendon on the inside of my right elbow near the “funny bone” area. Here’s where my major concerns have come into play:
a little over a month ago; my eyesight took a major dive very suddenly in my left eye, I felt very “not myself” and took myself to the er where a Gallium contrast mri was performed on my brain as well as some reflex/strength tests. End result was my doctor saying nothing was found in my eyes although I had what they considered “mild non specific t1 hyperintensity in the putaminal region of my brain”. I was very concerned about this, although the doctor urged me not to be, as they see things like this in toxic exposure or drinking too much moonshine (I’m in Texas so I guess that’s not uncommon here).
I have been prescribed clonazepam daily since my diagnosis of sarcoidosis and have been taking something called kratom, a legal crushed leaf that produces opiate-like pain killing effects. I also use cannabis to relax, eat and sleep, as the stressors/sarcoidosis in my life have caused me to lose a lot of weight. Id accredit this to choice, as I am the opposite of a stress-eater. I went a long time eating a meal a day If that at all. In other words; I’ve been taking these together for almost 3 years. The kratom does act as a stimulant in small doses. I also until recently had a very high caffeine intake to combat my chronic fatigue.
since my er visit regarding the hyperintensity, I have experienced what I wish wasn’t signs and symptoms of motor neuron disease. I have been catching myself lost in thought mid sentence and transient vision problems. As far as motor function goes; my hands felt very confused for lack of a better word for a little while. I went in my closet and started buttoning shirts and to my dismay, it was a lot more difficult than normal.
following this er visit, I experienced 16 straight days of full body fasiculation, and when I say full body, I mean every muscle in my body that I’m aware of including my tongue. Although I cannot diagnose my hyper reflexes, I believe that they are hyperreflexive; I can tap my pattelar reflex; my knee shoots up in the air; and if repeated, I experience Spasticity, or I think so atleast. At one point I could even tap hard above my knee and experience strong knee jerk. This resulted in my thigh muscles tightening up for hours and leaving me sore; which in turn has made it difficult to tell if I’m experiencing perceived weakness or clinical. I didn’t present clinical weakness during my er visit, but I noticed little things in the past couple months.
I read the forum regarding how our muscles are different, and how different dips etc are a normal part of being a human being. One of my first concerns were the muscles in my right forearm. I seemed to have a very long dip on the inside of my forearm. This arm had experienced weakness and this arm was predominantly the one that had concerned me and still does. The muscle that would be closest to the part of my wrist that runs to my pinky seems smaller than the other, and the seemingly unaffected arm has the slightest bit more muscle in that area. In fact; the right wrist feels like there’s nothing to flex within that inch of what I’d assume would be congruent small muscle.
I know I’m a little bit all over the place here but this is really where my confusion sets in as well as a little glimmer of hope that what I’m going through isn’t the worst case scenario; the 16 day fasiculation saga ended, for almost a week I didn’t, or rather barely experienced fasiculation. The strange weakness in my hands and/or arms (really don’t know where the weakness derived from) “seemed” to have resolved. I was Very relieved.
Shortly after, the fasiculations (some so small they could be unseen, some large enough to create visibility) came back in certain areas of my body, but a lot of it was in my right leg. Just yesterday my right jaw muscle fasiculation lasted all day and night. Just this morning (after a night of testing my own reflexes and developing stiffness into the next day) I got in my car to drive to work and pressing the gas felt slightly labored and tense, although I have felt this before as well followed by another day where my leg felt loose and relaxed. When it does occur, I feel like my kneecap is out of place or my joint is loose.
I will say that I am a very anxious person and I always have been. Single father with a full time job Along with some ptsd from already being diagnosed with a “there’s no way you could have that” type of disease. Anxiety makes the fasiculation worse. So does coffee. Sometimes my little self administered strength tests will cause small fasiculation in the area that I am worried about, for example; I knock my knee with my phone a few times, my leg shoots straight up, stiffness and soreness sets in and I’ll feel a couple twitches. My reflex sensitivity is also transient, as just now I knocked my knee and had what I’d consider a very normal response, not kicking up too high or creating stiffness or spasticity.
One thing i will note about my right leg (the one that felt weak whether it was from Spasticity or real deal weakness) is that I inured it pretty severely about 6 months ago. I crushed my foot; i was in a brace and boot for atleast a month following. The whole leg was pretty messed up, and during that time I recall the feelings of what are very reminiscent of the way people describe fibrillation,very fine and fast, but deep in the leg. I can only describe it as the sound someone makes as they finish a soda out of a straw, but instead of a sound, it’s a feeling. I hope that makes sense to someone. I hope this is indicative that the strong reflex could be from injury, but even in the leg without concern of weakness, I experience fasiculation and what I’d consider to be strong reflex, just no Stiffness.
another concern of mine is that these problems are predominately on my right side regarding the small arm muscle and stiff leg; although I do some strenuous work to some degree. I’m a body piercer in a high volume setting. I do anywhere from 200-250 procedures weekly, in other words, I’m bent over a LOT and my hands are constantly wrapped around small needles, small pieces of jewelry and screwing little tops and gems onto little tiny posts, although I have no back pain and don’t really know if spinal injury can occur painlessly.
I made a post on my sarcoidosis support group asking if any members experience fasiculation/twitches/spasms and/or weakness. I had 88 responses, all of which were along the lines of “yes” or “thank god someone said it, I had full body fasiculation for 2 years” and this made me hopeful that neurosarcoidosis could be the culprit. Not that neurosarcoidosis is a great diagnosis; in fact it has high morbidity rates. It’s just very hard for doctors to detect, some don’t even believe it exists While others say 40% of people living with sarc will encounter it eventually.
I don’t want to come off as a know it all or disrespectful in the least, as I certainly don’t know nearly as much about als or mnd as anyone here; but a huge concern of mine is that a very close friend or mine (who’s probably going to see this post) does have als. He’s one of the very fortunate people walking and talking 5 years post diagnosis and everything I watched him go through is what I feel that I’m going through. I don’t like to talk to him about it, nor does he like to talk about it with me. I’d love to chalk this up to being a hypochondriac but even in a total resting state; I go through these fasiculations and symptoms.
My neurologist won’t see me until a month from today, so unfortunately I let doctor google come into my life. Anything I’ve found regarding hyperintensity in the putamen leads me right to “how to conclusively diagnose multiple system atrophy”. Needless to say that crushed me.
i guess the last thing I’d like to note is that I spent a long time sticking my tongue out for a week. I still have what appears to be little tongue fasiculation but if it’s left completely in my mouth, they don’t “appear”to be there. My concern was that I had a very disorienting headache one day at work and felt my mouth tiring very easily while I spoke and did have some words slur, this lasted a few days, but resolved. I don’t know if this was due to spasticity in my under-jaw muscle or not but I’d like to hope and think it was self-induced by hyper focusing on my tongue and flexing my jaw to see if there were any missing or shrunken muscles in my jaw or neck. I’d also like to hope that the strain and weakness I felt in my right arm and leg were due to the same, in regards to over testing reflex and strenuous work.
Today, I feel pretty normal aside from some fasiculations Here and there in random places and waking up with that stiff leg from stupidly trying to be my own doctor last night and further freaking myself out. tongue and jaw are normal, strength and dexterity feel normal. Right leg softened up and doesn’t feel weird anymore.
as far as the putaminal hyperintensity goes, I really don’t think I can chalk that up to a normal headache or toxicity unless one of my medications or supplements could possibly render such an effect similar to drinking moonshine or huffing paint. Which I really doubt.
In conclusion; I have a pretty complicated situation with my predisposition to sarcoidosis. I’m assuming transient weakness isn’t something that can occur in ALS, although The weakness I’ve encountered was so slight that I don’t really know if it came and went or if I’ve just acclimated to it. All I really know is that muscle weakness/spasticity/fasiculations/atrophy are all hallmark of als. They’re scary. The internet will always point right in the direction of als regarding those 4 symptoms. I see mixed reports of MRI findings regarding als, a lot will say that a clean mri doesn’t mean your clear of als, some will say that there can be putaminal involvement.
Besides my fasiculations and reflexes, all of my symptoms have been “slight” for lack of a better word. I guess what scares me the most is that the fasiculations and brisk reflex are a real occurrence in my leg and my hope that something else might be going on is stemming from the idea that the weakness in my hands that I initially noted seemed to go away, or atleast plateau or become unnoticeable, although I do still feel strain in my forearm if I’m playing kendama (basically a wooden Japanese yo-yo-like toy.
I guess it’s too soon to call it, although Id like to make it clear that I’m not trying to receive a diagnosis here. I’d just like to know if what I’m describing is of concern for als.
I did make a call describing my symptoms to the woman who’s son passed, I believe the organization was called “ALS worldwide” there was a number on the site to reach her with any questions and she told me it sounded like early onset. Also a big week ruined to say the least. This woman is not a doctor nor a sufferer of als although I’m sure she is very knowledgeable. I just wanted to get some insight from those of you who are selfless enough to be on this forum, and I must say again; you are truly selflessly brave and I can’t stress enough how admirable I find it that you are here to help others. Thank you for looking and listening.
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