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CrystalAnn

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Apr 10, 2017
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Learn about ALS
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US
State
Washington
City
Mountlake Terrace
I am in need of some advice – I am going to see the neurologist on Thursday.

Here is a little background.
I am a 29 yr old female – relatively healthy.

About 6-7 years ago I went to the doctor with symptoms of weakness – arm/hands & legs/feet felt heavy & full body numbness.

I was out and all of the sudden I became weak were I could not even pick up change out of my wallet.

Met with a neurologist - had an eeg results were nothing. (No EMG)

Had an MRI of spinal cord & brain - Nothing conclusive. They found a few things in my brain that my GP said could just be “ditzles” (whatever that means) and could just be my brain and that my weakness was “perceived.”

This ended up going away after a few months.

I can’t recall since it has been so long sometime after that first episode I have a numb patch of skin. Graze my hands and no feeling.

1 ½ ago – same symptoms. New neurologist – just did a basic in office exam. I.e. raise your arms, squeeze my fingers and check your reflexes.

He said there was absolutely nothing wrong with me and I need to get metal help. (I was under a lot of stress and anxiety but he was a little rude.)

I ended up going to the chiropractor since my spine was out of alignment. Seemed to help – symptoms went away after a few months.

I have had tremors for about 10 years. These happen not at rest but after I try to straighten out my hand, I carrying something heavy or under stress. I have also noticed fasciculations for about 7 years


Fast forward to 2 weeks ago.

I notices weakness in my right arm in the push up position and within 4 days it spread to both arms. I also am getting muscle spasms/fasciculations in arms and legs.

Also Stiffness; aching; cramping, (feeling like someone is squeezing my arms) and noticeable weakness. I had to drive 1 1/2 home and it was very challenging.

It is hard to do basic things like drink out of a mug, wash my hair or put on makeup. They are extremely fatigued and in pain.

Even when I lay down and not move they still hurt. Over the weekend it was cold and especially my thumbs stop working and when I made a fist it was searing pain on the top of my hand to my fingers.

It has affected my legs as well – they felt heavy but over this weekend they have felt weak and sore – almost like a cramp or that you did a really hard work out.


The last few days it has gotten worse – hard to even type without my forearms giving me trouble. More muscle jerking & muscle twitches at rest in arms and legs. Feels like my arms are being squeezed and my legs are starting to get cramps/weakness as well.

No breathing/swallowing/eating/talking issues

So far I have had these blood tests – all normal
Erythrocyte Sedimentation Rate
CBC, DIFF
Vitamin D (Fine but a little low.)
Vitamin B12 (Fine but a little high)
CRP, HIGH SENSITIVITY
ANA REFLEX COMPREHENSIVE PANEL
THYROID STIMULATING HORMONE
COMPREHENSIVE METABOLIC PANEL

X-Ray of upper spine – only comments from my doctor were on my ecare online account – “No bony issues”

All of this has me extremely confused & worried since I was completely healthy – able to exercise and live life normally and this all came quickly and "seemingly" out of the blue.

Any thoughts?!?
 
I'm not seeing and compelling evidence of ALS. With 6-7 years of history of a variety of symptoms which come and go, numb spots, tremors and severe pain point in a different direction. While it sounds like you have something going on, ALS is not the obvious conclusion. I would keep working with your doctor to track it down, but it's highly unlikely it's a motor neuron disease.
 
Not ALS.
See a psychiatrist--not a psychologist. The psychiatrist is an MD who understands both the body and the mind. Expensive, but worth it.
 
I wouldn't jump into psychiatry until a neuro or systemic dz is excluded. I would follow up w/ the internist and ask about a repeat spine study. But I agree ALS is not likely on the table.
 
Thank you all for the replies. I will update after my Neuro appointment.
 
Went to Neuro appointment and am scheduling out an MRI for my brain + spinal cord. I am waiting on pre-approval from my insurance. Now just waiting and not trying to get frustrated at the weakness, cramping and pain in my arms.😡
 
Hypocalcemia ?
 
I don't think its hypocalcemia. My calcium and vitamin D levels are normal.
 
Sigh..... Its been about 4 weeks since my symptoms started and I don't feel any better but worse.
I still have arm and hand weakness. It's my biceps cramping when I try to do anything and my fine motor skills in my hands seem to be going out the window. My legs are getting worse as well. It's getting more difficult to walk around - especially going up/down stairs they shake and harder to get out of a squat position. My toes feel weak if I curl them and hold my calves get tired quickly. Also it seems like my tongue is affected. It feels like the back of my tongue is cramping and when I stick out my tongue I can't keep it still. Muscle twitches random all over - both arms, legs, back and rear. MRI with contrast for brain and spinal cord tomorrow.
 
The more you describe your symptoms, the more I think it is not ALS. Never heard of so many sensory inputs and such body-wide weaknesses before. Seems much more systemic, not like ALS.
 
Thank you for the comment. I am dumbfounded that I can have weakness in all 4 limbs and especially the arms so severely in such a short period of time. I am hoping that the MRI will shed some light.
 
Have you looked into Mercury, Lead Poisoning? I mentioned Hypocalcemia earlier, I note again given your Vitamin D was low. My sister passed from ALS, while caring for her, I let myself "go" in that I stopped taking Calcium, Vitamin D, B Vitamins, and Iron, I was too concerned and busy with her care and caring for my mom full-time and running my business ...wow I cannot believe how much it affected me. I never thought I had ALS, but the symptoms were alarming. On an unrelated issue and a hunch a nurse advised me she was convinced it was Hypocalcemia. I never realized how debilitating it can be to be low in Calcium. I have been on Bone Health ( New Chapter)for 4 weeks, and each day it gets better and better. I can almost feel my nerves coming alive again. Aches and twitching much better, tongue is calming down. I had a weird feeling in my right foot and leg and a burning pain on my foot at times, that too is improving everyday.
I will say I thought child birth was breeze, never sick, never go to the doctors and live a very healthy lifestyle, hence why I could not imagine being deficient in any mineral, vitamin etc;
I believe a deficiency can tip the scale for some us that can leave us scratching our heads for a diagnosis. I am glad I was vigilant in searching for an answer, found it by accident, life changing for me. I hope you get answers.
 
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