28 year old male with a pre existing auto immune condition worried about potential als

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Sep 26, 2019
Loved one DX
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.
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Edit: wrist is still a little weak while writing
You need to go to your doctor. You can’t test your own reflexes - no one can not even a neurologist. Nor can you evaluate yourself for spasticity. Twitching means nothing and your tongue will twitch if you stick it out. ALS weakness does not resolve

Sarcoid is tough and can affect you in many ways. Some of your symptoms may be from that but only your doctor can say.

If you were really told over the phone by ANYONE it sounds like early onset that was irresponsible.

Go get seen and come back and tell us what happened

Good luck
Thank you Nikki. Yeah y’know as a body modification artist, I have a lot of opportunities to look at people’s tongues. Most are nervous, but I run a special on sundays and pierce atleast 70ish people over the course of 11 hours (not fun with a sarc flare up or current symptoms but it pays the bills) point being; I’ve been closely observing tongues since these symptoms arose. Some tongues were so still and that scared me, while others appeared to have fasiculation like mine. I’m hoping mine are benign, but they exist. Sometimes more sometimes less. Definitely something I’ll bring up to the doc. But my tongue has full range of motion and doesn’t twitch if I tense it up. I can touch my nose with it. I hope that’s in my favor 🤷‍♂️ Thanks again for the reply.
My right arm and leg just seem to feel strained and tired at the end of the day. My right arm and right back muscles seem to be a lot smaller. I just don’t really know how to determine perceived vs clinical weakness. I guess clinical weakness would be determined by a specialist.

Last day/night my left jaw muscle twitched uncontrollably, the only way I could get it to stop was by clenching. It moved up my jaw and under my eye; leaving my face so sore today. I’ve tried some shoulder exercises, I’ve noticed that my right arm will burn faster than my seemingly unaffected left arm but I can still power through it.

Im just hyper focused on this. Wish I could get to my specialist sooner than later. I really can’t tell if my weakness is transient or if I just have other muscle groups accommodating for ones that are potentially getting weaker. I thought this all started in my hands but I can’t tell what the hell is going on now. The hand I thought that was weak will get sore before the other, but it can still do everything it needs to do. The shoulder of that arm with the sore hand seems to remain sort of popped out of place. The muscles on my left arm seem to keep the shoulder bones where they belong.

Although I’m a single father of a 3 year old and the past 3 years have involved a lot of prolonged and progressing exercise as I use my dominant arm to carry my child. Hoping that could have something to do with it. I’m just feeling all around and certain parts of my back feel like there’s barely muscle if at all compared to the other side. My whole right side of my upper body seems like it has less muscle than the left. I just really hope this is sarc related.
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I think you must have missed reading this carefully, so it's really time to do so.
Reading it twice and slowly is a really good idea.
Clinical weakness is measured by a doctor - feeling weak is a totally different thing.
With ALS you simply won't feel any of the things you are reporting.
Please go work with a doctor who can examine you. These longs posts have not described ALS, so that's fantastic news and continuing to add to them won't make any difference now.
Good luck with this, I'm so glad you don't belong here, truly we never want new members!
I think everyone has conveyed why we aren't worried about ALS. And for anyone else reading, don't call a stranger and ask if you could have ALS; from a legal perspective alone, s/he will seldom rule it out. It's not like a licensed telemedicine visit where someone is evaluating your potential ear infection.

Drew: if you really think any joint is in questionable shape in terms of your muscles keeping the bone in the socket, regardless of why that might be, see a physician. S/he doesn't have to be a neurologist. Subluxation and dislocation are no fun.

Carrying a child on one side, as per other posters we've seen here, can affect both that side and the other side that tries to compensate.

I also have to say that mixing a benzo (which is not something I'd just keep taking just because someone wrote it once upon a time), cannabis and kratom with anxiety and chronic pain is not a life-enhancing recipe. And before you say none of that is actually your problem, re-read your first post. You're clearly in distress. So before chasing new dx, I'd optimize treatment for what you already have, because odds are high you're making your own symptoms worse.

Kratom is often cut with codeine and caffeine, which are only going to add to your risk, and the death toll is why it's being considered for additional restrictions here. There are also flat-out counterfeits, so who knows what you're getting?

PT, elongating-type bodywork like Pilates, ballet, tai chi, etc. and/or therapeutic massage might all have a role in your beginning to feel better. Repetitive motion and constrained mobility such as your workdays probably entail is a recipe for the pain/stiffness you describe, even before we talk about pre-existing inflammation, so I'd think about other settings in which you could use your skills.

The [really] good news is that you don't belong here. All the best.
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I truly appreciate everyone’s time and consideration regarding your replies. This past month has been very difficult, it’s been hard to even look my daughter in the eyes.

Honestly, I did read the disclaimer and I think my Emotionally driven frantic-ness overrides my logic sometimes. I know there’s no means of concluding clinical weakness until I’m clinically evaluated. I’m just going through some strange and uncomfortable changes, and I fear that my long term kratom use has a lot to do with it now. From what I understand; in Lamons terms atleast, it’s hypothesized that interrupting your dopamine receptors with toxins (like kratom, a total dopamine booster) is a means of developing mnd, as these receptors play a big role in your putamen (motor function center of the brain) and I want to obviously, desperately take everyone’s advice that I don’t belong here, my fear is just has a lot to do with the way this all went down:

I get an mri that yields non specific symmetrical putaminal hyperintensity. im no stranger to jumping to conclusions, but I didn’t even know that the putamen had anything to do with motor function until well-after I had this onset of decreased dexterity, tired arms and hands, fasiculations (visible or small and fine) and this strange hyper reflexivity. I can’t tap my knee without a strong kick and a stiff thigh for hours, at this point I’m scared to even have a doctor test my reflexes because it just hurts for long after to do so. The fasiculations have become fewer and further apart, but they aren’t extremely fast now, they almost feel like a catch and release of my muscle, they’re really all different depending on where they’re happening; it’s a daily occurrence, it’s just become more predictable. I know I’ll have slow subtle ones in my right knee where as I know the ones in my bicep will be visible.

Being covered head to toe in tattoos doesn’t help as far as keeping an eye on my muscle tone goes but my right arm feels like it’s missing muscles compared to my left, my forearm is softer and and smaller. Can’t tell if it’s the pulmonary sarcoidosis or not but I’m constantly being asked to speak up, as I’m forcing out my words and speaking in a relaxed tone has just turned into a low raspy strained-sounding voice. I’ve had fasiculations in my diaphragm. With the exception of something like a foot drop or complete inability to use a limb, I just can’t seem to find or imagine what symmetrical putaminal hyperintensity Followed along with All these other symptoms could mean.

Between the mri finding symmetrical hyperintensity in My putamen, slower fasiculations, ridiculously sensitive reflexes followed by prolonged painful stiffness, laboring to speak up, strange asymmetry in my shoulders, the extremely chronic fatigue that’s reared it’s ugly head (my sarcoidosis causes chronic fatigue but now it’s on another level), and my back becoming uneven and painful, it’s hard not to be scared. My right arm seems skinnier and every day I wake up with these strange wrinkles and folds on that arm that last until I’m up and about for an hour. Every day it just feels like somethings new, and not for the better; minus my right hand feeling slightly more dexterous than it did. That’s my glimmer of hope here; something did get a little better. But of course there’s s study on google that says 6% of als patients had a resurgence of symptoms after a sudden wave and remission of classic als symptoms. Even as I write this I’m trying to slide my kneecap down where it belongs after testing my own reflex and becoming stiff and achy last night.

I’m sorry if what I’m saying is coming off in any way offensive, getting to hear from you guys is really nothing short of an honor. I look at My real life friend with als as nothing short of a hero and a role model. Through everything he’s been through; he’s tough, sound of mind, and caring. I only see him once a week but not a day goes by that I’m not grateful to call him my friend. I view anyone with als or mnd as a hero, the truly strong and the brave. I truly appreciate all of your advice and input.

I hope this is the last time you guys see me on here. My biggest wish in life is just to live long enough to see my daughter spread her wings and find a husband. My biggest fear isn’t als, it’s the way it would impact my 3 year old. I just want to see her grow. thank you all again for taking the time to reach out to me. I’ll be seeing a neurologist on the28th regarding these new changes. It’s been a mentally torturous month to Say the least, thank you for making an effort in lifting my burdens.

I attatched a side by side of my posture. Don’t worry, I’ve been this skinny for a long time.


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Edit: I don’t know if I mentioned but it’s specifically my right arm and leg that have these strange feelings. Left side feels totally normal besides 2 days of relentless jaw fasiculation and moderate “here and there” leg fasiculations. But no changes in size, strength or joint stability. Also not the side I carried a baby in for the past 3 years.
We’ve already told you our opinions that you don’t have ALS. At this point you’re coming across as anxious and obsessed. This forum exists primarily to provide support for those with ALS, their caregivers, and those who have lost loved ones to ALS. The purpose of the “Could this be ALS” sub forum is for concerned individuals to ask a few questions and then move on. We are not in a position to provide ongoing support to the anxious. Please reread our previous responses to you and also this link. Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms!

Keep working with your doctors on your concerns. You might also check out the forum “No more panic” for anxiety, and you’ll see that fear of ALS is a common concern among people with health anxiety.

I’m closing this thread as I feel it has served its purpose. I wish you the best.
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