Any Ideas??

[andrealw]

I'm trying to figure out who to turn to if none of my symptoms appear to be ALS. Please check my history below. If you have a recommendation or another forum, please share. I do see my neuro again on August 10. We will be discussing meds.

March 2011
-Electric Nerve pain in feet and hands developed when pregnant
-Had normal induced birth due to blood pressure rise
-Nerve pain continued and only happened with motion

January 2012
-Freaked out I had ALS or something similar. Severe anxiety started. I've always had health anxiety for about the past 8 years.
-Went to neuro. He ran all tests. Did nerve test and emg. All normal and the nerves performed better than normal according to him. Said peripheral neuropathy I guess just based on what I told him.
-brisk reflexes all over
-Just dealt with things and tried to ignore it.
-The nerve pain in the hands and feet went away and/or substantially subsided.

November 2012
-My mom (52) went in the hospital for liver chorosis. I started having a buzzing sensation in both feet and calves that is constant. I still have this today. She passed away a few days after Christmas. Emotions have been horrible and anxiety very hightened ever since.

January 2013
-Yearly neuro checkup. All looked normal to him. MRI of brain done again. Normal. Told him about the buzzing/vibration and he wasn't concerned. Still hyper reflexes all over.

February 2014
-Shooting nerve pain in right foot when extended and twisted. Buzzing continues. Can feel it in my hands when I'm really worked up.
-Ankle pain in the same foot and nerve pain off and on.
-Went for neuro check up because my anxiety was so high. All was normal. Reflexes in knees overactive possibly from anxiety.

-started Cymbalta and Ativan and did ok for about a year and a half.

Present:
-Back pain on leg side for 4 months. Comes and goes. Still have constant spasms in feet and calves. Entire left arm feels weird and twitches on and off. It also hurts on and off. When I flex my foot I get zapping nerve pains in the heel and bottom. I could probably go on and on. I'm just freaked out.

I'm having a VERY hard time accepting that I don't know what has caused the nerve pain from pregnancy. I constantly think this is ALS and I'm going to be taken away from my family and 5 1/2year old daughter. Neuro said if it was something bad I would've had more symptoms by now.

Thank you for your help!

 

[lgelb]

Your neuro is right. But your dosages of Cymbalta and Ativan may need adjustment or your regimen changed. Ativan is usually not a long-term solution for anxiety as you seem to have.

Your ability to interact with your daughter and other family, and to find other pleasures in life, should not be compromised by anxiety. Please find a counselor who can help. Your primary care doc, family, friends, organizations, EAP at work, etc. may have ideas, or you can look at Healthgrades, Yelp, Google, etc.

Best,
Laurie

 

[ShiftKicker]

Hiya-

Your neuro is absolutely right. ALS is also a motor control problem. You would have developed some pretty significant movement issues by now if you had even a slow moving form of ALS. Your focus on ALS is not doing you any good.

Peripheral (pain, tingling, buzzing, etc) issues are another matter entirely. There is a reason you are having these symptoms. While it is not ALS, there seems to be a chronic and life affecting problem here. I have no idea what might be causing it with you, but there are many many issues that can create symptoms such as yours.

I think it's appropriate to continue looking for cause of your physical symptoms. I also think it's important for you to seek counseling to help you cope with such life affecting symptoms while you keep searching. It's been 5 years, and you need some support and new tools to help you advocate for yourself in your search.

Best

 

[andrealw]

Thank you for the advice and much love to you both.

 

[Vincent]

Pain, pain and more pain. ALS is a disease that effects motor neurons only and leaves sensory nerves intact. It's one part of the mind **** that is ALS. I presented with left foot drop in 2011. Abnormal emgs and completely unable to contract the tibialis anterior muscle. I saw GPs, Physiatrists, neurologists, spent more time in MRI machines than any 250 lb person should. Every health professional I saw, every time I saw them asked about pain, loss of sensation, burning, tingling, any abnormal sensation. The answer was no to all of that. Apparently that is not a good thing. 3 years later I got the diagnosis. The only thing the doctor can say at that point, I so sorry. 80% of us will be dead in 3-5 years. They have nothing to stop or even slow this down. You are healthy. Go out and enjoy it. And please stay away from sites like this one. They just feed your anxiety