Old 07-18-2016, 04:36 AM #1
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Default 30yo female, weakness in arms and legs and fascics all over

Dear all,
I've been quietly reading a lot around the forum but I finally need to write my story.

It all started with feeling generally ill for a while, let's say may and June of this year. I was just not feeling right, dizziness, nausea, stomach problems.
Everybody including docs said it was anxiety and wrote it off as that. I had better and worse days. I went to a psychiatrist that gave me citalopram (celexa) an SSRI. I took a small dose for only three days and felt INCREDIBLY sick.

I quit the meds because after all I like to feel awake and clear headed and myself. I know it's a controversial subject with antidepressants but that was my choice.

Anyways after citalopram I started having muscle weakness all over, but especially in my left leg and in my hands. I was also having tingling sensations all over my legs and back. This all faded away gradually, except for the weakness, that did seem like "percieved" because I could still do everything, strength tests too (visited neuro muscular doctor 10 days ago - I think more specialised in ms than als - and he said I was fine, but I was starting to feel fasciculations, really tiny, on my legs and shoulders that I could feel inside but not see or touch. He said that was fine.

Six days ago during the night I was woken up by a cramp in my left calf and it quickly stopped when I massaged it but started fasciculating strong and visibly in three spots and hasn't stopped since. The fasciculations have quickly spread into my thighs front and back, arms, shoulders, other calf, lower belly. So far hands and feet pretty unaffected.

I was on my way to convince myself that I have bfs when three days ago I noticed a dent in my right calf, on the side. I'm pretty good at anatomy and I really think this is not normal, and I'm 100% sure it wasn't there before because I've been checking my legs like crazy.
What's worse is that it's on the leg that felt less weak between the two!
And it still does. I don't understand.

Sleeping is really hard with all the twitching but I also have this really frustrating feeling in my "weak" spots as if the muscle was a bit ticklish that doesn't go away at rest. So when I move I'm heavy and weak, and at rest I'm twitchy and my muscles feel like rubber bands wiggling and tickling. I get no peace.

The weakest feeling is in my thighs and shoulders, but it feels like my core muscles (lower belly) are also getting really soft and shaky. I do shake a lot with minimal effort.

So here it is. I gave my main symptoms.
Both my hands feel kind of stiff too, and both forearms seems to get tired quickly.

At this point I know all I can do is get an emg but I'll have to fight because doc thinks all I have is anxiety (hasn't seen hole in calf yet though).

I'm terrified to wake up tomorrow or the next day with another dent in my arm or leg, or with foot drop or my fingers not working.

My source of hope is only the fact that I didn't think als weakness came on so quickly? I mean literally I had a huge decrease in strength and fasciculations increase in six days? Can it be? Does it mean I have fast progression?
Also I didn't know als attacked all limbs at once? I am having issues with both arms and legs although the left side seems weaker.

As I hold up my smartphone my lower arm feels tense and weird. I keep thinking, tomorrow I will wake up and that muscle will be gone.

One last thing. I'm not afraid of this deadly disease in itself ( I mean of course I am) but I'm running out of ideas of what this might be.
What pains me the most is that I have a partner that I love with all my heart he is the love of my life and I've already put him through hell these last months of feeling ill.
I hate the idea of hurting him. Of making him suffer. How can I do this to someone I love.
If it turns out I have a degenerative disease I can never accept to let him see me like that, to scar his life with such an experience?
After all we are both young.

I can't stand it.
In my mind I'm sure something is seriously wrong. The calf dent was the last drop. Can it really be?

Thank you so much for your time everyone, I've been so inspired by the kindness and hopefulness that I found through these pages.

Do I have als?
If I do, how can I do this to the love of my life?

Gigi
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Old 07-18-2016, 05:12 AM #2
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Default Re: 30yo female, weakness in arms and legs and fascics all over

PALS who are in the early stages before diagnosis don't 'feel' ill, weak, strange or anything.

Dents are not atrophy.

You have been told there is no clinical weakness and a neuromuscular specialist told you that you are fine.

I'm not sure what you want from us - strangers on the internet who can't see you, but can hear you describe nothing of ALS. OK from a stranger who knows ALS really well - you don't have ALS symptoms.

Please go and get help, you can recover from whatever this is.
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Old 07-18-2016, 05:46 AM #3
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Default Re: 30yo female, weakness in arms and legs and fascics all over

Dear Tillie,
Thank you for your kind reply.

I understand what you are saying, but I promise you, ten days ago when I saw the neurologist I had double the strength than what I feel today. And no major "keep you up at night" fasciculations.
If he saw me today I'm sure he would think twice before sending me on my way.

Everything feels so heavy and my arms and legs shake with every minor effort. When I stand up I feel like I'm wearing lead clothes and bricks in my shoes.
The fasciculations are constant.

I'm really worried.
Just by the speed of it all. And the impact a diagnosis could have on my loved ones.

Can I please ask you in what way do you mean that a dent is not atrophy?
It looks like a minor outer calf muscle, not one of the greater ones, is just gone, it's a hole on the side of my leg. Is that inconsistent with also atrophy?

Thank you so much in advance for your patience.
Tomorrow I have another visit with an als specialised neurologist and hope he can give some explanations and request an emg.

G
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Old 07-18-2016, 02:50 PM #4
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Default Re: 30yo female, weakness in arms and legs and fascics all over

You are not quite listening.

When my husbands hands started failing he simply could not do things and he would look at his hands in amazement. They felt perfectly normal. ALS is not a muscle disease, they feel the same. You describe all these feelings - that's not ALS.

All I will say is dents in muscles is not atrophy - you need a doctor to diagnose atrophy, just like you need one to diagnose clinical weakness. You have perceived weakness.

That's about all there is.
You need to let your doctors explore other avenues with you now.
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Old 07-18-2016, 02:59 PM #5
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Default Re: 30yo female, weakness in arms and legs and fascics all over

What you describe does not sound like ALS, nor does ALS come on quickly.

I'm not sure how you came to the conclusion that you might have a terminal illness. I just did a quick search on citalopram and the first thing to come up was muscle spasming/twitching.

You might consider speaking to your doctor about any lingering side effects you may have from that versus increasing your anxiety over a fatal disease that you don't have.
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Old 07-18-2016, 04:12 PM #6
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Default Re: 30yo female, weakness in arms and legs and fascics all over

My husband never "felt" one thing before the foot weekness that caused him to trip on stairs. He STILL "felt" nothing after that except for the knee he had injured in the fall. It took us two MONTHS nearly after that to figure out he could not fully lift his foot.

That's ALS. as Tillie said, not a muscle disease. Essentially the minute you start saying stuff "feels weird, I for one get about 98% sure it's not ALS.
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Old 07-18-2016, 07:08 PM #7
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Default Re: 30yo female, weakness in arms and legs and fascics all over

I agree with Lenore. There was no "weird" feeling, I feel normal except when I try to sit up, walk or pick something up. In fact, I forgot one day that I can no longer walk, got up, and fell flat on my face. Felt weird then - like an idiot.

Doctors cannot state that you have ALS until they test and rule out everything else. So, if you still think you may have ALS, you have to go through MRI's, EMG's, blood tests, and maybe seeing other Specialists if the doctor deems it is necessary.

Hugs,
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Old 07-19-2016, 01:13 AM #8
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Default Re: 30yo female, weakness in arms and legs and fascics all over

Hey guys, thanks a lot for all of your replies. Your advice is precious considering what you are going through as diagnosed and caregivers. You are more brave and generous than I will ever be.

Nevertheless I can't shake the thought. I will see the specialist today and try to shed some light on the matter.

Yesterday was tough as I want to a concert (Beyonce!) here in Milano with my best friend, I bought the tickets months ago. Everybody was standing up during her big hits and I tried during one song, and my legs were just hurting, my knees felt like they couldn't hold me, I had to sit down for the rest of the concert, even though the people in front of me were mostly in the way.
My arms were hurting from clapping. I could not dance at all, not even sway with the music, I just had to sit down.
We ended up leaving before the end of the show because I was feeling so bad and I was afraid of having to stand up a long time on the way out of the stadium with all the people.

During the night my whole body was sore from the effort, this morning slightly better. Weakness still there. I feel like this is happening so fast.
The nights are always the worst because of the popping and twitching all over, and when i move my joints (knees, elbows, shoulders) they pop slightly as if they almost might slide out of place.

I can't deal with this. I'm afraid of getting the dreaded diagnosis. I've searched and searched for other medical explanations for whats going on and in my ignorance I don't think there is that much left on the table. Not many ticks in my neighbourhood.

G
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Old 07-19-2016, 01:55 AM #9
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Default Re: 30yo female, weakness in arms and legs and fascics all over

Gigi,
I would start back with an internist if your appt tomorrow is not productive. It is more likely that you have something systemic than neuromuscular. The "feeling sick" months could be a virus that has left you with muscular deficits. It is not uncommon, and likely not permanent even if true.

But you are also in an age group in which a rheumatologic disorder could explain your symptoms.

So an internist is a good place to start to sort things out. But you don't have to be afraid of ALS. And all the more likely possibilities are very treatable.

Best,
Laurie
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Old 07-19-2016, 03:38 AM #10
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Default Re: 30yo female, weakness in arms and legs and fascics all over

I think you just need to work with your doctors now.

Nothing we say will make any difference. We can tell you over and over that everything you describe does not happen with ALS, but that is taking our time away from supporting those who do have ALS.

I hope your doctor visit tomorrow will get you on the right path to solving your issues as I know they are distressing. They just are not ALS.
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