Panic

[psymon7856]

Hi all
it is my 1st time to post on this because I falls in the panic of ALS recently...
I am a 17 y/o male and was diagnosed with Cerebral Palsy since I was born. could not walk on my own and with generally good upper limb control. I am pretty sensitive to by body and I loved to ask google whenever I feel like sth is not going right...
it was jan 6th. I just came back from a long vacation and was doing research on Stephen Hawking. then I noticed ALS popping up, I researched and know that the first symptom is weakness/clumsy. odd enough then, I started to notice myself to have the exactly same symptoms (I know it could largely because of my hypochondriac but I just cannot get over the ALS thoughts)... although my mom has called a neuro who treated me like some 2 years ago and clearly he says that ALS would be xtremely impossible (I am too young & I don't have genetic issues) and she has tested my gripping strength and revealed that I don't have any weakness in my right hand. I was still scared and developed insomnia & some muscle twitchings all over --randomly.
then I found my school psychologist for help who gives me few relaxing techs. I start to feel better.. for a week before similar things strikes back
the fresh round of panic starts on 2 days ago, when I was bored at that point. I start to feel clumsiness in my right hand again and there seems to have a pit btwn my thumb and my index finger (when I stretch my hand open it shows up, it disappear when I rest my hand or make a fist... but since I have CP my right thumb is not as dexterity as my left one and I usually don't use it to do things)
in the mean time. I feel weird weakness on my hand--why it is weird is that I would feel weakness in my different finger at different time--this time it's index and next time ring... etc.) but all hand functions seems normal--I can write, lift heavy things and turn a key. it just feels weird
the muscle twitching is long gone. my major concern is the pit in my hand right now...
I know my symptoms isn't anywhere close to ALS. but I just need reassurances--since there are some pro here.
thank you for your time...

 

[Nikki J]

Ok reassuring you. Not remotely ALS as you know.

you have plenty of challenges as a young person with CP. adding health anxiety you carry a heavy burden. Please get help for the health anxiety as that is fixable

 

[psymon7856]

Nikki
thanks for the fast reply (so fast)
the pit only shows up on my back of my hand and the palm side is completely okay. Currently in touch with psychologist...

 

[psymon7856]

SOOO I am back under fresh rounds of Panic
I have been noticing a pit on my right hand, between thumb and the index. on my back of my hand (not thenar side). it shows up when I stretch my hand & fingers but disappears when I rest my hand and make fist.
I will put a picture on later
also, the sense of perceived weakness still persist but I can do everything normally. I just feel weird and attempts to stretch it a lot to check the function of my hands (yeah, much like OCD)
also. my right thumb has the intention to curl inside my palm. i.e. it is hard to "open" my thumb. when I put my palm flat on desk. the thumb will shake, attempting to go inside of my palm
Quick recap that I was diagnosed with cerebral palsy shortly after I was born, and the tightness of my thumb was due to the high spaticity of my thenar muscle. just feel like now the spaticity are "super high" compared to months ago
Lastly, a question for experts here: which one comes first: atrophy or clinical weakness? and what literally does a clinical weakness looks/feels like? does perceived weakness happens before clinical weakness? i.e. does a certain function (such as holding a pen) gradually loses or suddenly (by gradually I mean one can holding a pen w/o problem today but find it become more difficult throughout time. and Sudden means today I can hold a pen but I cannot do it next Day)
I need to really get these straight here. thank you all
P.S: I saw my GP last month. I told her all the above, she tested my grip strength (without an instrument) and says I have "superpower" taking into consider of my age (17)
I still think my GP is not that reliable... she is not a neuro... but the point is that she is going to refer me to a real neuro only if she felt something is not right and obviously she has not. so, Kinda a relief

 

[ShiftKicker]

Heya- I'm wondering if you see a physiotherapist at all. You're 17, and likely going through a series of growth spurts. This is bound to create strain on joints and muscles- particularly as you have spasticity due to CP- and cause all sorts of imbalance as things shake down. A physio can definitely provide you some excellent feedback after a full assessment and maybe be able to help you figure out what's going on.

It's not clear if your gp has much experience with folk who have more complex conditions like CP- and a consult with someone who is more knowledgeable about how the sometimes pretty sudden growth in someone's teens may affect muscles burdened by a previously existing condition such as CP. If you aren't already a member of a support group either online or local to you for those with CP, it might be a good idea to find such a resource- you may find other people your age have experienced the same. This forum is for folk with ALS and their caregivers, and you really don't belong in such a place (which is good news).

 

[psymon7856]

ShiftKicker--
thank you for fast reply!
I am not that concerned about my thumb shaking--it is due to high spaticity and can be significantly relieved when I was distracted to another stuff (schooling, typing. etc)
what bothers me is that pit on my hand--this is (I believe) not related to CP. but since I have never looking at my hands that carefully in my life before (who looks at their hands everyday?), the Pit might be there for a long time
I went to PT twice a week. and my therapist says that I am improving on everything.
Maybe I should see a psychologist?
but the questions I ask at end of my last post is my major questions rn. I think I can become much less worried when those got answered

 

[KarenNWendyn]

Pits and dents are not a problem. Lots of people have them. If you can still do everything you could do previously, you’re fine. See your doctor if you’re concerned.
You don’t need to be here on an ALS forum.

 

[psymon7856]

Does this seems like Atrophy?

 

[Nikki J]

No. You are not showing any signs of ALS. Discuss your concern with your parent(s) and doctors. Closing thread. Do not start another