Please help me! I'm pretty scared

[agusalesso]

Hello!! I'm very anxious and here is my story, if you could help me I would be grateful:

I am 19 years old and i've had a spine surgery bc of scoliosis two months ago. I had complications following to that surgery and i got a "intracranial hypotension" diagnosis. I started taking corticosteroids for that (Deltisone, specially) and three days after my first dose i started feeling some cramps in my legs, or what i associate as cramps, because mine are annoying but painless.

I feel that when I put pressure more in one leg than in the other this is functional to the "cramps" (for example, when i lie down with one leg on top of the other, or when i sit with one leg bent), they become more intense, but if I don't I can still feel them. These cramps affect more my left leg than my right one. I also have muscle spasms in random places, specially when lying down. Finally, two days ago i started feeling that my right thumb is more rigid, and it hurts when I want to extend it completely.

I remember that before these symptons started, before i was diagnosed with "intracranial hypotension", a neurologist and a clinical doctor did the reflex test to me and I had hyperreflexia, but I know that that couldn't mean anything in particular.

Could you help me? I have another appointment with a neurologist that does EMGs in june, anyways I will start with therapy because I know that I have issues to solve regarding to all of this that are psychological. Does this seem to a possible start of ALS?

 

[ShiftKicker]

Hello- so sorry you find yourself worried about ALS.

Have a read here: Read Before Posting as it contains a lot of information that you may find reassuring.

You've had a pretty big burden placed on your body, particularly your nervous system, with spinal surgery and the subsequent complications from it. Have you seen a doctor or physical therapist within the last few days/weeks for follow up? If not, it might be a good idea to contact your gp and let them know there have been some changes.

With regards to ALS- you already have an explanation for your symptoms- recent spinal surgery and intracranial hypotension. Steroids also do have some pretty big side effects. I am so sorry you've had such a rough time of it and hope your recovery from your surgery becomes a bit easier as time goes by.

Please take care

 

[agusalesso]

Hello!! I had a conversation through Whatsapp three days ago with my clinical doctor about the cramps, and he told me that they are non-specific sensitive symptoms. I would love to know that my case is just a mix of BFS, sequels of the surgery and anxiety. The last neurologist I've seen didn't even check me when I told him that I had spine surgery. I'm looking forward to getting better

 

[lgelb]

I would ask about PT, which I would have expected an order for following your surgery, but can understand with the complications why it would be delayed.

In addition to strengthening muscles and developing more joint flexibility where needed, there is a neuromuscular rehabilitation component where re-connecting your brain with what needs to move when, can be an issue once scoliosis is corrected.

I agree there is no reason to think of ALS.

Best,
Laurie

 

[agusalesso]

Hello!! Sorry for bothering again, my query with a neuromuscular diseases specialist neuro is the 8th of June. I'm nervous until then because I'm feeling that my right hand thumb is getting more and more stiff every day, I also quit taking my corticosteroids and the cramps (idk if they are cramps or tingling because they don't hurt) didn't stop. I read in this forum that when you have ALS, your arm or leg simply stops working. But I'm scared thinking that this could be progressive, and that this is just the beginning of something worse. I didn't read a single person that went through spinal fusion that have these sequels after that, which made me very insecure. I will appreciate your answers, sorry again for being annoying.

 

[lgelb]

My best advice is:
Stop reading. You cannot possibly glean from random posts what post-surgery in your context should look like. Spinal fusion is major surgery.

So besides checking in w/ your surgeon, I would also explore their or your self-referral to PT or a physiatrist (rehab specialist).

What you describe still doesn't sound like ALS. Being scared isn't going to help your thumb. Getting medical help for it very well could.

 

[agusalesso]

Sorry for coming here with unspecific symptons. I have plenty of time until my neuro's query and I don't know what to do in the mean time because everything seems to get worse and more confusing every day. I started having lots of muscle knots and many parts of my body do a "pop" sound when i move them, one of them is my right hand pinky, my thumb didn't get to that yet but stays stiffer than the others, there are moments in which I feel tingling in my right hand after I use it or out of context. Random muscles pain arrived too, my neck specially is experimenting a nightmare. Idk what is happening to me and I hope it has nothing to do with ALS, but whatever this is, it's progressing rapidly or that is how it seems to me. I just will have to wait. Thank you for taking your time to answer a scared young girl with more doubts than answers <3

 

[Clearwater AL]

You don't know what to do in the mean time because everything seems to get worse
and more confusing every day.

Until June... we are not here to hold your 19 year old hand. Maybe family (parents) can help
with that. (I'd bet since you joined the 22nd of this month you probably saw threads
that the odds are 6 digits or more of against your chances of being diagnosed with ALS
at just 19 years old.

I hope your doctors and your June appointment finds relief or remedy for your
physical troubles. Again, until then... no need to post more worries, concerns, symptoms.

Stop reading about ALS and log off this Forum. Give it a try.

 

[lgelb]

Your mind can basically make knots and stiffness out of muscle tension. Hyperventilating can create tingling.

What to do in the meantime? Use your muscles to walk, swim, exercise, stretch...all things people with ALS ultimately cannot do.

Help someone less fortunate.

Donate to a good cause.

Go outdoors with a friend.

Don't sit around and read about diseases. That's like tying a noose around your own neck [pun intended].

 

[agusalesso]

Hey. This is the last time I'll post until after my neuro query because I have a question, you obviously have the right to not answer it if you don't want to and I'll also ask him the same one: cramps as a first sympton of ALS occur in any extremity? Or is it localised? Can it stop if you move your limb in any form or there is nothing to stop it? That's all, thank you for the space and sorry...

 

[lgelb]

"Cramps" if you mean painful spasms are unlikely to be the way that ALS starts out.

If you have cramps for other reasons, sometimes moving helps and sometimes it doesn't. But I would certainly take note of how often they occur and under what circumstances they wax/wane for when you see the neurologist.