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Dea7

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Hello,

I have become beyond frustrated lately. My symptoms started in November with pain that started in the palm of my hand, following day my arm, than legs. It lasted 4 days, I saw a massage therapist and I was better, no more symptoms. January 5th same pattern only this time lasted 17 days and at this point I had a ton of neurological symptoms. Felt shocks going off around my body, would get "flutters" under my skin. It felt like popcorn popping under my skin. I than realized at a later date they were twitches. During that time I had experienced a ton of symptoms. Everyday it got worse than got better and went away. Since then I've had 2 more relapses. My biggest issue is pain. My arms and legs burn and ache. My newest symptoms is similar to Restless leg syndrome. I've had that for years however this is different. Started while laying, then a few days later it affected both arms and legs all day long. They were minor jerks not visible to others but i can feel it and notice it. I did some research and they look most like myoclonus twitching. The pain in my arms and legs are the one symptom I get everytime I relapse. There has been times were I woke up and I felt like I would soon lose my mobility. A few days later I am completely fine. For instance typing this message is causing a lot of pain in my hands. Things feel heavier, can barely climb stairs but then I go into remission and I am fine for a few weeks. Biggest triggers for relapse is stress and overuse of my hands. I am a makeup artist. If I use my hands more one week my symptoms return.

I have had an MRI results normal. I though MS however I don't a normal MRI is a true indication that I don't have MS. I'm seeing a rheumotologist next month as my neurologist thinks it is fibromyalgia. I feared ALS because of the twitching, jerks and pain and decrease in mobility (only in relapse). I have requested a nerve conduction test waiting for a call. My only moments of hope is I do not think ALS comes and goes with symptoms. Also here is the kicker... My sister in July started experiencing very similar symptoms as me and mine started in November. Her MRI is scheduled in 2 weeks. Can anyone relate? Everytime my symptoms return I get so depressed I can barely function because I have no idea what is going on. This is beyond frustrating.
 

moe1959

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Joined
Sep 13, 2014
Messages
708
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I'm sorry , although, can relaite, for myself I'm considering a shrink, for the first time in my life. I want to know how to handle these changes in a healthy way.
First, I'm going to do my homework on just who to talk to. DEFINITELY want someone familiar with fibro.

Here's n interesting thing that happened to me at my last Dr. App. I was asked from a Nurse/friend how I was, doing wrong ? I'm past saying oh just fine, When I'm NOT. Move in forward I told her about my memory lapse and fibro, I asked her if she knew what Fibromyalgia is and her honest response was NO. I thought to myself No?How can that be, your a nurse..so...I took 5 min of her precious time, and I'm mean that in a nice way, to educate her ,she had her own patients to take care of. I know she will pray for me. I thanked her for her time and said feel free to charge me..because She sincerely listened.
 

cmetryme

Extremely helpful member
Joined
Nov 3, 2013
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Diagnosis
03/2008
Country
USA
State
Texas
DEA7, welcome. i hear what your saying. i too have the same issues. research spasticity. jerking is muscles and shaking is nerves. they both burn.
i warn you now, you may go through a few RA's before you find the right one. i had my monthly appoint at pain mgt.(see my post under general discussions) my legs gave out on me yesterday for a bit, then ok for a few hours. now today im on my walker to get to the restroom. this could last 2 hours or 3 months. i just never know when it will stop. if you need to talk moe,ruralchick,forgetmenot,lovelychantel are all here and you can private msg any of us.
we are here to listen and help.
 

Dea7

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Saw my neurologist today... He is now telling me fibromyalgia does not present itself in the way of my symptoms. Where prior he said it was and was sending me to a rheumatologist. He is doing a nerve conduction test to rule out ALS. :( Nice way of saying your symptoms are there now lets see if you have it. I am so terrified. I've been in bed crying all day. I have to wait 2 weeks for this damn test.
 

Forgetmenot

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Joined
Oct 6, 2014
Messages
1,422
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
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Hertfordshire
Oh darling how very scary for u. First off fibro can and does start different for everyone. I have pain in my hands and stiffness at night and in the morning.i do not have the tender points at all never have.my hands can be so bad I can hardly move them . The next day it's gone.i get jerks all the time everywhere mostly small and I get the shakes a lot. Pls don't waist two weeks crying. Fibro mimics so many illness. Pls do let us all no how u get on .and feel free to come in and vent in the mean time.xxxx
 

lilly11

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Joined
Apr 15, 2015
Messages
11
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Diagnosis
11/1991
Country
CA
State
Ontario
Hi,

I have the same onset and the same symptoms, I have not been diagnosed with fibro. BUT i have twitching, spascity, numbness, pain in hands is where mine began. Now it is in the back of my knees but same here with the pain when using my hands !
 

moe1959

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Joined
Sep 13, 2014
Messages
708
Reason
Undiagnosed
Diagnosis
09/2014
Country
US
State
wa.
What is ms or als? One thing I have found after research on fibromialgia is it has so many of the same symptoms. As MS MD and now two other . How on God's green earth is everything finally diagnosed?
For myself....I was dropping my hair brush on a weekly bases, I was afraid of ms but diagnosed with fibro.
 

moe1959

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Joined
Sep 13, 2014
Messages
708
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Diagnosis
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State
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I had that same nerve test too. While conducting one on my leg it jumped, she said wait I'll do that again and nothing happened. If it wasn't so darn expensive I would have it performed again. I felt like a lab rat for someone learning.
 

lilly11

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Apr 15, 2015
Messages
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Reason
Diagnosis
11/1991
Country
CA
State
Ontario
Please update us on how your EMG goes, I am getting one in two weeks!

ALS is rare, lets have hope

Message me if you need, I am going through this same situation.

xx

Lilly
 

hayley

New member
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Jun 1, 2015
Messages
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Reason
DX FIBRO
Diagnosis
05/2009
Country
US
State
NY
How did you EMG go? I suffer from the same issues and am also scared of it being something worse then Fibyro. Waiting to get in to see the Neurologist. Hope you got good news.
 

moe1959

Very helpful member
Joined
Sep 13, 2014
Messages
708
Reason
Undiagnosed
Diagnosis
09/2014
Country
US
State
wa.
What's a nerve test? I may have had one, it was quite exspensive, I think sometimes Dr.s send us off for tests, assuming we have good insurance. Mine was around 700.00, not so good insurance.
 
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