Old 03-16-2019, 05:11 PM #1 (permalink)
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Lightbulb 25 year old. Possible ALS?

Hi everyone; let me introduce myself. My name is Yasmin and I am a 25 year old female. I hate that I’ve come here and I wish I didn’t get to this point because I feel absolutely awful for doing so but the anxiety ended me up in the hospital and I am at my lowest point with this fear or possibility and I thought I would come to the best. First of thank you for any reply I get and any advice I get, all of you are incredibly brave and wonderful and I am sorry if I came here to waste your time.

Let me tell you where my journey started with this fear or possibility. Around December time I began taking an SSRI for anxiety and OCD (obviously) and I began to get muscle twitches. I stopped the SSRI and they went away but then they came back- full force. I didn’t notice them focally, I assume they started all over at first. They have been non stop since then. Mostly worse in my feet and calves. But they can jump between legs, face, feet, head, other unfortunate places.

I first went to my GP about these a few weeks ago and he said he sees nothing of concern but I should see a neurologist regardless. As I am moving to the states to be married; I didn’t have time to wait for the NHS so I looked one up and found someone that was private and went to him this Wednesday. I was with him for about two hours. He did everything you would expect, toe standing, balance tests. All were well. Did my reflexes, said they were all normal except some brisk reflexes in my knees on both sides (mentioned to me this is normal in young people) and that I had an absent abdominal reflex that he didn’t seem to worried about. Everything else was normal except he said I had an essential tremor.

He diagnosed me with something called a central nervous system sensitivity (as I was also having strange sensations) and the tremor, and I said could you check for weakness and he laughed and said I wasn’t weak. He then got up and pushed down on my arms and they didn’t move and he laughed. I told him about my fears and he said I had more chance of finding out I was a man and told me to take it off the table. He was lovely,, but quite arrogant and this made me lose some faith as him as he made a few silly statements that weren’t true to my knowledge. So I left and felt okay. No weakness, no atrophy. And he couldn’t see any of my twitches so didn’t even feel comfortable giving me a BFS diagnosis.

That led me to google everything when I got home
(Obviously) and I googled what an absent abdominal reflex meant, and ended up on another spiral. So I ended up in A and E (ER for you wonderful American folk) and they at first thought I had a stroke because I was complaining of weakness and jerking and a headache. When I saw the doctor she did all the same tests as the other neuro but actually checked for weakness in my legs hands and arms. She said nothing was there. I was fine. I even grasped her hand a little two tight. She said my reflexes were all good. She couldn’t get any babinski movement from me at all, and she tried a few times. I assume that’s a good thing.

Bloods were fine, she told me to get an MRI and my thyroid checked. But I came back to the devil again (google) and went into a panic attack over my babinski as I read no reaction could also signal something bad and then others said it was normal so I am conflicted on those.

Anyway, I can go for an EMG but it would be self payed and boy are they expensive. I don’t know whether I want to feed into the fear either or just accept everything and move on until I have weakness or don’t.

I came here for advice from the best, and I appreciate any I get. Does this sound like ALS? I have read and searched so many conflicting stories and articles that I don’t know whether or not to go forth with the EMG or drop this all together.

I appreciate you all. Thank. You for taking the time to read my post as I have read so many of yours and I can’t tell you how greatful I am to everyone here for even looking.

Have a wonderful evening.

Love and lots of light,

Yasmin xo

Last edited by lgelb : 03-16-2019 at 05:25 PM Reason: paras
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Old 03-16-2019, 05:34 PM #2 (permalink)
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Default Re: 25 year old. Possible ALS?

SSRIs can worsen sleep and bring on twitching, weird feelings, etc.

Since you seem still to be anxious, it may be worth discussing with someone who can write for something that is not an SSRI but can still help your anxiety for now. Mirtazapine is one example. Once you are settled into your marriage (congratulations!) and life in the US, you can decide whether to seek counseling, try to taper/refine drugs, etc. I am sure waiting for everything to come to fruition is stressful, as are moves across the pond. Be honest with your fiancée as this proceeds, because keeping things inside is more stress, too.

Nothing you have written resembles ALS, and any neuro worth his salt who spent two(!) hours with you could see if you needed further testing based on how you presented. So I'd save my money for your healthy future, give your intended a call, and move ahead with life.

Best,
Laurie
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Old 03-16-2019, 05:54 PM #3 (permalink)
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Default Re: 25 year old. Possible ALS?

Evening Laurie,

Thank you so much for getting back to me, I know us folks can be a bit tedious. They did begin on the SSRI, but once I stopped they stopped and then started up again. So I think SSRI are a no- no for me. It's just because he noticed other symptoms for ALS that I became concerned. Like my brisk reflexes and absent abdominal one (although I did read that that's mostly for late, and actually early is for MS) so I did end up in a bit of a spiral. The twitches do tend to calm down here and there and sometimes I don't even notice them. My left foot also has some that I hadn't noticed until I stretched the foot, so I worried this has been there and I didn't notice, but they aren't always there. I took this as a good sign.

As I type this, distracted the twitches aren't there.
I am in therapy for anxiety and use CBD oil and Valium at the moment to help.

I have seen 3 doctors now who have noticed no weakness, or atrophy and two of them couldn't even see the twitches. I assume I should leave this be as it's almost been 4 months since they started and I once read weakness comes on 1-5 weeks usually if twitching is the first sign. I am also only 25, not impossible but unlikely so I want you to know I can be logical.

I wonder if I should go for the EMG just to let the fear go? But I am more fearful of them finding something.

I think I will take your advice and go live my life as I am lucky to have one. But if anyone has anything more to add I would be incredibly grateful.

Thank you again Laurie, and I send a lot of light your way. I appreciate your time immensely.
(Also, if there is anything I can do to help on the forum, or in anyway- please let me know.)
xx
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Old 03-16-2019, 06:42 PM #4 (permalink)
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Default Re: 25 year old. Possible ALS?

You have stated you don't wish to take a prescribed medicine to help with your symptoms, nor are you willing to get an EMG because you are concerned about the possible results. I'll be very direct, this makes me wonder why you are wasting your time and others' here asking for advice and recommendations if you will not accept doctors' prescribed treatment? That should come first, and strangers' opinions on the internet should not figure in to it at all.

Please, follow the recommendations from your doctors. If you won't believe them, this shows a pattern that mirrors many of the repeat, persistent health anxiety driven posters who eventually try the patience of even the most generous of members here. By all means, don't believe your doctors and refuse recommended treatment, but please don't do the same here and continue to post after you have received an answer from a very experienced member here.
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Old 03-16-2019, 07:02 PM #5 (permalink)
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Default Re: 25 year old. Possible ALS?

Hello,

Sorry If I have upset anyone. My doctors didn't recommend an EMG, I was going to pay for one out of pocket. But I completely respect what you are saying, and I didn't mean to upset anyone by that maybe thoughtless comment.

I was just looking for some advice as in if this sounded like ALS and if others thought I should go ahead as I know sometimes doctors especially those not trained specifically in ALS, tend to disregard it from many stories I have read.

I thank you for your time, and promise not to bother you anymore. Thank you for replying to me, I appreciate it and I hope you have a lovely day.

Sending everyone much love.
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Old 03-16-2019, 07:08 PM #6 (permalink)
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Default Re: 25 year old. Possible ALS?

Apologies- upon re-reading I realize the reason ssri meds are not for you is due to your associating them with twitching. However, it does still stand that your symptoms are associated with a few specifics in your life and not at all to do with ALS.
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Old 03-16-2019, 07:16 PM #7 (permalink)
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Default Re: 25 year old. Possible ALS?

Hey! it's no problem! thank you for getting back to me either way.

sending love and light to you
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