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meghen

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Joined
Aug 4, 2015
Messages
18
Reason
Lost a loved one
Country
US
State
IA
City
des moines
Hey All,

I am new to this forum and want to first of all say - THANK YOU All - from the bottom of my heart for your time, your support and your patience!

Second, Ohga123, I am the mother of a 4 year old and my worst fear is him having to live a life without his mother. I can completely relate to the way you've been feeling and am sorry to hear that you've been in the same dark place as me.

Atsugi- I'm hoping you and/or anyone else on here with ALS knowledge can take a moment to read my story and share your thoughts on why I also, do NOT have ALS.

I have been experiencing symptoms since last October, when I was initially seen for what I thought was carpal tunnle. At that time I was diagnosed with Raynauds and made some ergo-improvements at work. Last April I went back to an orthopedic doctor to have an EMG and other testing done to figure out why my right hand seemed to be continuously losing strength and dexterity. My EMG showed no particular abnormalities and they, again, ruled out carpal tunnle. I can't just accept my dominant hand losing strength, and now my right foot feeling the same way... so I followed up with my primary care physician in June and Finally shared my fear of having ALS. My grandmother passed away from ALS when she was 79 (within the same year she was diagnosed), and I'm now realizing the fear of having the same disease has been lingering in the back of my mind since then. My primary doc didn't seem too concerned at my June appointment, but agreed to refer me to a neurologist for my own peace of mind. My nuerology appointment is scheduled for 9/3/15. Since my June appointment, I have not only been experiencing depression and the worst anxiety I could ever imagine, but I have also noticed more and more symptoms. Some of which including fascilations (mostly in my right leg, sometimes in my right arm, right butt cheek and other random places, including my face), my head feeling heavy like it wants to hang forward, one spot on the back side of my hand showing puffiness, between my pointer & middle finger, just below the knuckles... and lastly, my left hand now having the same sensations as my right hand - weakness, going cold and less dexterity. I forgot to add the odd symptom which has only occurred a couple of times, but my right hand and once foot - became discolored.. a red band across my knuckels, white band on both sides of the red band.. going back to normal color about 10-20 minutes after.

I am SO SORRY for the never-ending post, but I am having a day.. one that I've been having more and more the closer my nuero-appointment comes... in that I cannot convince myself that I do NOT have ALS and that I MUST start getting in touch with the experts in order to attempt getting ahead of this as much as possible - in the hopes of getting into clinical trials, etc. & allowing my most precious baby to have his mother for at least a few more years :(

Thank you in advance and once again - THANK YOU ALL for your support; I honestly cannot express how grateful I am to've found this group!

Meg
 
I am guessing you did not read the sticky as you did not start a post of your own. Please do so.
I don't think you have ALS
Several of your symptoms puffy color change and sensation point away from ALS as does the apparent randomness of symptoms in multiple locations

I am sorry about your grandmother but one relative does not put you at risk. I am thinking that you are fairly young? If you have a 4 year old? The risk decreases with younger age
Please enjoy the rest of the summer with your child rather than fretting about an unlikely possibility while you wait for your appointment
 
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Nikki J, Thank you!

I apologize for not starting my own thread. I am almost 37, so not terribly young ;)

I love your posts; I was just reading your thread about TDB-43... thank you, thank you, THANK YOU!
 
I also do not hear ALS in your story, but read the sticky and maybe you'll understand why your random and varied symptoms do not sound like ALS. You need to understand that your symptoms do not sound like ALS.

Try to relax before your neuro appointment. Health anxiety can add some weird meaningless symptoms.
 
Dusty7 - THANK YOU!

I have read this site and the sticky's to the point of almost having them memorized. You are exactly right - I need to accept & believe that I do not have ALS in order to move on from this debilatating anxiety. I will keep taking my Lorazapam and will report back after my neuro appointment.

I've also started making a conscious effort to refocus my energy into fundraising for the ALS Association instead of dwelling and doing nothing about it. I honestly do believe that a cure, if not an effective treatment is just around the corner. And I want you and Nikki J and everyone else in this group to know that you truly make a difference in my life, and clearly many others who stop through here. Thank you from the bottom of my heart and God bless you all. <3
 
Meg,

I hope that you are finding a measure of peace from the responses you've received. Hang in there!
 
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