Back After 7 months...

JulieBS

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Hello,

I'm back after a few months of peace of mind.

Brief summary: 7 months ago, I went to several neurologists and made different tests (EMG, MRI, evoked potentials ..) for a suspicion of multiple sclerosis. All tests were normal, but my GP was very concerned about the fasciculations. She was very worried about this because of ALS. But after the EMG which showed nothing serious (I posted the results in my previous post) and your reassuring return, I could forget this story.

But for a few weeks, I have an embarrassment in the left hand. It is stiff and clumsy. I talked to my GP about it, and when I told her that I sometimes had twitches in my thenar, she took things very seriously. She would like me to go back to see a neuro. She told me 6 months is a good delay to redo a check. (I asked her if an EMG can be done to early she didn't really answered...)

I'm demoralized, I can not take any more medical exams, and I do not know if she's right to be alarmed. I do not think she knows anything at all (she told me she had 1 case of ALS throughout her career).

My current situation:
- daily fasciculations in the calves and feet for 7 months minimum,
- bilateral hyperreflexia
- for a few weeks, sensations of awkwardness in the left hand, fasciculations of thenar. I sometimes feel pinches and a feeling of loss of weakness, which extends into the forearm. I sometimes have trouble holding certain positions when I hold something.
- I do not think I have any real loss of strength or atrophy. And you can imagine, I watched and tested myself a lot ...

Do you think I need to worry again? Accept a new exam tour? Or just change GP ...? In 7 months I should have other problems if I had anything serious, right?

Thank you so much...
 

KimT

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I just think your GP is not very keen when it comes to ALS. There are so many reasons for twitches and so much evidence that you don't have ALS. If it were me, I'd find a new GP. Hope you were tested for B-12, Vitamin D, and routine blood work to include TSH.

In the normal population, twitches can be caused by anxiety, lack of sleep, poor hydration, too much caffeine, and a host of other things. They are very common. Bilateral hyperreflexia is also common. Everyone in my family has it as does my neurologist.
 

JulieBS

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Thanks a lot for for your answer.

All my blood tests were good (except for vitamin D like everybody...), but I had my thyrroid removed 15 years ago so I guess my meds aren't as efficient as the natural hormons to keep a constant level. And speaking of lack of sleep I have a 2 months old baby... :rolleyes:

My thought about my hand was that holding my daughter made me hold new positions for a long time, inducing stiffness ans crampes in my non dominant hand. I was just asking my GP advices about it but she freaked out.

I guess I should just stop listening to her and try not to worry because of her reaction... But for an anxious person, it's not easy! But I don't feel like doing more tests...
 

KarenNWendyn

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Here are the previous threads:



I second Kim’s response about twitching and hyperreflexia. You’ve been cleared of ALS, so there’s no reason for alarm.

As someone who has been through medical school, I can tell you that most medical schools (at least in the US) provide minimal discussion on ALS unless the student happens to work with a neurologist trained in neuromuscular diseases. GPs see maybe one or two patients with ALS in their career, or less. And if they’ve seen an ALS patient, they usually don’t deal with their neurological issues. Primary care physicians are usually quick to refer any patient who has symptoms that are not up their alley, and this is also because they understandably don’t want to take on any extra liability. So your GP is just doing her job. Again, no reason for panic. Be sure to talk to your GP about your anxiety.
 

JulieBS

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Thanks a lot Karen.

Be sure to talk to your GP about your anxiety.
I wasn't anxious before her reaction, I really wasn't thinking about ALS when I asked her about my hand...

I agree with you, GP have to protect themselves. But your answers confort me in the idea that I won't go to a neuro now. I've been there 6 months ago, it's enough.

Thanks for your time!
 

Bestfriends14

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Julie, all you've been thinking about is ALS, so please don't say that's not what you were thinking about. You posted in February, April, and now again. When in the world are you going to let this go? You are your own worst enemy when it comes to fascination of this disease.

Clearly you are unable to let this worry go, so best to speak to a counselor about what you can do for help. You'll get a heck of a lot further in feeling better when you look to your head for a solution instead of chasing a disease you so obviously do not have.

Good luck in life and be grateful for your good health.
 

JulieBS

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I don't deny I had a lot of anxiety in february. I was in hospital for three days, all my world was build around potential disease for weeks. But I'm not lying saying I didn't think about ALS (or any other disease ..) for months. I went to my GP for my annual blood tests (no more thyrroid...), and really thought my stiff hand was baby related. And I never denied my GP recommandation made me anxious again.

So all I wanted was to avoid going back to my old fears. Thanks to everyone for that.
 

lgelb

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I agree with Karen and Kim, your GP is not an ALS expert and she is just covering her bases. It is quite common to have a stiff hand or arm when holding a baby for long periods, in postures you are not used to, and the non-dominant hand can certainly feel awkward as you did not use it as much or long in the past.

Congratulations on your daughter!

Best,
Laurie
 
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