17 and suspect JALS, apologies for invading this forum but am struggling

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lgelb

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Connective tissue and hypermobility disorders overlap. You could be evaluated by a medical geneticist or rheumatologist. Both see teens.

There is no reason that your EMG should not be clean, just like the last one. The feelings you have most often do NOT mean that there is anything resembling ALS.
 
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Whew, just coming back here before my EMG in about 2 weeks to report some new findings. I am now able to straighten my pointer finger normally, as I showed in the picture before I was unable. My hand fasciculations have decreased majorly. But, I have some new symptoms. My big toes have pins and needles every time I wake up, and I realized I have a major tremor in my whole body when holding any position with my abs or neck. My neck and wrists do not make smooth movements, only fast jerky ones. Thinking this is some sort of body-wide tremor thing. I’m very relieved that my hand has improved and am going to continue to watch it, but these new symptoms are a bit concerning to me. Does this recovery of the muscle in my hand point away from ALS? What about this weird tremor situation? Anyways, counting the days till Feb 4th emg. Very thankful to those that have responded to and helped me through this hard time I’m having. Hopefully will be able to look back on this with a lesson learned. Fingers crossed
 

lgelb

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Bodywide tremors are not characteristic of ALS, nor recovery, as you point out.
 
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Have had a wide collection of new symptoms. Slight imbalance, constant awakenings at night (I usually sleep very soundly), fasciculations on the sole of my right foot, burning sensation in the palm of my right hand where the weakness was.

I got an EMG today though with a neuromuscular specialist at Georgetown university hospital. She says it’s perfectly clean. This is super reassuring for me, but I am still worried about how these symptoms continue to progress and how well everything is lining up. I have a follow up from this EMG on the 18th. On the bright side, I got into my first choice college yesterday, so super excited and glad to have received good news today. Thank you all for your time
 

lgelb

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Congrats on earning admission to your targeted school.

Nothing you describe accords with "progressing" or "lining up" for ALS. Reassess your sleep surface/environment (mattress, pillow, temp, humidity, dirty filters) and your stress (hopefully reduced now that the wait for admission results is over), tweak what's needed, then take your clean EMG off to a healthy life and college, and don't look back in that direction. For sure that's a privilege everyone here would envy.

I'll repeat the recommendation that you consult your PCP or a dietitician about diet and weight so you can keep up your energy. Weight loss isn't necessarily sinister, but your weight is on the low side, as you noted.

If you have continued changes in your mobility, you can consult a rheumatologist and possibly undertake physical therapy with the aim of ameliorating the unspecified hypermobility disorder. And, if a physiatrist or rheumatologist thinks it's prudent, a medical genetics evaluation at a medical center like Georgetown can tell you if you show signs of a specific disorder that should be monitored.

All the best. --Laurie
 
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Laurie, I forgot to thank you for your response last time but thanks so much for all of your help. Coming back to report some new symptoms after being anxiety free for past month until today.

Firstly, right shoulder pain has worsened and there is really no explanation. I have a strange sensation of tingling and pushing in my right shoulder as well. I’ve noticed the muscles at the back of my head that lift my head up and down tremble terribly when I lift my head. I cannot move smoothly in this way anymore. Calf twitches have continued 24/7. Pain in my right ulnar nerve is a new thing, and I often wake up after sleeping with my elbow bent not being able to move the last 2 fingers in my hand. My thenar muscle twitches constantly, moving my thumb into my palm involuntarily.

But my new symptom today is what led me to come back here. My right tricep is now twitching in a “thumping” manner non stop. It’s a twitch, not a fasciculation this time. This is the first twitch in my upper body that has not subsided within a minute or two. It’s gone on for about 6 hours now and is terribly annoying and has been worrying me to death. I can attach a video if needed.
 

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Please don't attach a video as it really has nothing to do with ALS in your circumstance. You've had a clean EMG, no ALS symptoms, and a clean clinical exam. What, may I ask, keeps you coming back to ask questions of terminally ill folks and their exhausted caregivers? This is not the forum for you and that is a very good thing. You really need to move past your focus on ALS and ask any further questions to your PCP. As well, I suggest bringing your fears to your parents or a have a tele-meeting with a counselor.

Good luck to you and take good care.
 
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Thank you for your response. I totally understand, and I realize this is not a place for me to be constantly inquiring about this. I’m being a total hypocrite but my anxiety has just spiked after googling my new symptoms and it would be amazing if I could just run them past you guys. As I described I began having neck extensor tremors (large shaking when tilting my head up and down.) Crazy pain in shoulder and neck continues without reason. Of course it had to snow the day I had a neurology appointment, and it got postponed 3 months which has kept me very worried. I’ve also felt weakness and tiredness when chewing certain things like bread that are chewy. Wondering if I should ask my primary care doc to expedite this process a bit. Waited 2 months for this appointment just for it to be postponed another 3. Again, my apologies for intrusion. All my best to everyone on this forum, you all are so inspiring and I so appreciate those that have taken the time to help me.
 

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Time to go back to your PC with these questions; they are not for a forum of dying folks.

Take good care and the best of luck to you.
 

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If your fear of ALS is driving anxiety and affecting your day to day life, it might be a good idea to speak with your doctor for sure.

I've sent you some resources via pm. Please have a look and then speak with your doctor about ways to mitigate your anxiety while you wait for your neuro appointment.

In the meantime, I will be closing this thread as a way to encourage a more appropriate focus other than a forum for those with ALS. After you've been to see a neuro, please let us know how it goes.
 
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