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Ak91

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Hi Everyone,

First off i just want to say thank you to anyone taking the time to read my story. It means so much to me to get some insight. I'm so lost and scared.

I am a 30 year old female who is really struggling with an onset of symptoms that doctors are unsure about.

My symptoms have been going on for about 6 months. First I noticed that it became difficult to type with my right hand. I was having some pain in my pinky and ring finger and my hand felt weak. The pain in my hand began to feel like small broken bones on the top of my hand. This is still continuing today (but more severe). One morning 3 months ago I work up with numbness and muscle cramps in my right arm, foot and leg. This numbness went on for 1 month. During this time i noticed twitching in my hand. I also noticed I couldn't work out the way I used to because I began to feel fatigued. My body would cramp up and become sore like i had just run a marathon. I saw a neurologist who sent me for an MRI of the neck and c-spine. No lesions. I also received an EMG which showed abnormalities in my right hand. I did not get to finish the EMG bc the pain was bad so they never made it to my legs and feet. I have had every blood test under the sun and everything is normal. Fast forward to today - over the past 3 months I have continued pain in my right hand that is now happening similarly in my left. I feel I am losing strength in this hand as well. I also have pain in my joints (ankles, and wrists), everything is so tight. The other night my foot got "stuck" and my toes would not move from this strange position. My hands feel most comfortable when they are curled forward. My legs feel tight and my forearms cramp very tightly regularly. I also experience extreme cramping in the bottom of my feet that keep me up at night. I've been waking up feeling like I'm choking on my own spit. I clear my throat often and just feel like my throat is thicker, if that makes sense. My symptoms come and go throughout my body but the hand pain, weakness and tightness is always there. After reading different symptoms online trying to find some answers I began to worry that I could have ALS . I am so scared. The days have been hard to get through with the pain and tightness. I just want some answers as I'm sure so many of you can relate to. I hope you can help. Thank you soso much!

Sincerely,
Ashley
 
Hi Ashley,

Just curious, did your neurologist have any thoughts regarding your symptoms? And did he order a brain MRI?
 
I've seen two Neuro's now and they would like to do a spinal tap. They did the brain and c-spine mri which showed no lesions or herniations. They don't seem to have any answers for me. They don't even mention ALS until i do but they won't say much regarding my concern. I feel helpless.
 
Well, i am going to let a more experience member of this board help you. Just remember, (I don't think any of us are doctors. So, continue to seek real medical advice.) Finally, your age is a benefit to you on this one.

God Bless You!
 
Well from what you say it does not sound like it is going to be ALS but you need to have the tests your doctors recommend. If they thought ALS was on the agenda they would be trying again on the EMG. You say you just want answers. answers are found by having the tests the doctors think necessary and letting them put the puzzle pieces together. It is not always a quick process. Your answers may not even be found in neurology but until they have all the data needed to diagnose you or exclude neurological conditions you are just going to spin your wheels. If a spinal tap is recommended why not schedule it?
 
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Thank you Nikki. You're right. I should schedule it. I just thought I'd reach out here in the mean time. Everything is a blur right now for me. I truly appreciate your response. <3
 
Keep ALL of your appointments and don't "doctor hop" to chase an ALS diagnosis.
 
Ashley,

There are some autoimmune disorders that resemble some of the symptoms that you describe. That is, perhaps, the purpose of the spinal tap which can help with that determination. Fortunately, most of those such disorders are not life threatening and can be recovered from. As with any problem and issue, "not knowing" is the greatest of evils... as it doesn't let us rest and wants to encourage our thoughts towards the very worst of conclusions. I hope you are able to get a speedy determination of what is going on so that you can seek remediation and recovery.

On a side note... as one who is going through this ride with my affected loved one, even the worst final diagnosis (which for us was ALS) did not mean the end of life. Instead, we were forced to quickly come to grips with the fact that it meant it was time to get to living. We often discuss how caught up we had become in the day-to-day and had inadvertently (and unknowingly) been allowing life to simply pass us by. We don't do that any more. Each day is a gift that we wake to with appreciation and joy. So, please, continue to seek your answers... but don't let yours days become consumed by the fear of the unknown... and forever lost behind you. Instead, also seek the very best in each next day that you have the privilege to participate in...

My best to you!

Jim
 
Jim,

Your post brought tears to my eyes. Thank you for taking the time to write to me. You're absolutely right. I need to try start living again. I've become so depressed but I'm still here and very much alive. Your story with your wife is inspiring. Thank you to you and to her for being so brave and setting such an awesome example for us all. I will remember what you said.

All my best to you both!
Ashley
 
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