Scary symptons

[molly1love]

I am so anxiety ridden over this fear of ALS. I'm sorry for coming here you are all so brave... I am 54 years old female. In 2005/2006 I had a severe inflammation of sternoclavicular joint requiring steroids etc. I lost 25 lbs and went to Internist. He looked at my palms an thought atrophy. Sent me to neuro. EMGs/NCVs all normal. Clinical normal except hyper reflexes moved on with life but self diagnosed fibromyalgia. About a year ago tingling sensation in legs went to different neuro. Diagnosed sensory peripheral neuropathy idiopathic. I decided to go to neuropathy clinic at Weill Cornell there EMG/NCV normal. Nerve biopsy normal. No neuropathy. I have been having numb toes heavy leg awkward feeling in foot when walking difficulty swallowing twitches. In May left extremities EMG normal. In August EMG bulbar region normal multiple exams normal except hyper reflexes. Saw ALS specialist at Columbia Presbyterian did exam. Didn't really like him he found a Hoffmans sign which stressed me out. But in his summary No signs of ALS , didn't do his own EMG. Now really having issues with lump in throat twitching and feeling of something wrong in left foot and leg I can still walk on tippy toes and heels but I call neuro at Weill Cornell and he is going to do another EMG of extremities and tongue I'm terrified

 

[vickim]

I think you are letting your anxiety take over your life. The more you worry the worse it will get. You have been dealing with this for 7 or 8 years. If it was als you would be in very bad shape. You have seen several drs and had several emg/nvc and they say all normal. Now going for another.

I am not a dr but I would say you are safe from als. You may need to get some meds to help with the anxiety. Anxiety can cause all kinds of medical problems and even kill.

 

[ottawa girl]

You had EMG tests in May, August and now want another? An ALS specialist told you that you don't have ALS. And you don't believe him because you don't like him?

The lump in your throat could be anxiety, GERD, post nasal drip - why not see an ENT instead of a neuro? Twitching is most often benign.

You are terrified because you're letting your fears be the boss of you. Please, seek help for your anxiety - luckily it is a curable condition.

 

[molly1love]

You had EMG tests in May, August and now want another? An ALS specialist told you that you don't have ALS. And you don't believe him because you don't like him?

The lump in your throat could be anxiety, GERD, post nasal drip - why not see an ENT instead of a neuro? Twitching is most often benign.

You are terrified because you're letting your fears be the boss of you. Please, seek help for your anxiety - luckily it is a curable condition.

I agree my anxiety is terrible. I am continuing my job as a full time nurse and mom so I try to keep going I take cymbalta for anxiety. But these last few weeks my leg is getting worse and worse. I talked to my neuro and he said we can do an EMG to see if anything new has developed. So to me that sounds like something could have. The ALS specialist did find Hoffmans sign. But he didn't seem concerned. All I can do is try to hold on till Tuesday. If I have it at least I will not keep thinking I'm crazy

 

[monster]

Hi Molly,
I too had symptoms since 2006, one of which was brisk reflexes. My Hoffmann was discovered in 2012. I've seen three Als specialist and they all said I'm fine.

Hyperreflexia and Hoffman can be caused by anxiety. There seems to be some of us like this, some of them just answered a thread I started recently too.
Sounds like your neuro is doing the emg just to put your mind at ease, not that he thinks anything is wrong. Good luck to you.

 

[molly1love]

Thanks monster. Did you have problems with leg heaviness/awkward walk. I'm so confused by all this some say EMG results don't matter. Some say they do. Thanks for the support. I'm so tired of uncertainty ...

 

[vickim]

Maybe look outside the realm of als. So many of these things mimic each other. You know your body and I am not saying something is or isn't wrong and if you really feel there is something wrong then pursue it. But also remember that stress can do terrible things to your body. If you choose to keep looking have an open mind.

 

[monster]

Hi Molly,
My legs feel weak going up stairs. On days I do too much my legs are tired. My hometown neuro suspected something wrong with me, so he sent me to a neuromuscular doctor. He wouldn't even do his own emg. The neuromuscular doctors said I'm fine.

It's just my guess but I think your neuro doesn't think it's anything he can't help you with, something treatable.

I also agree with Vicki. On the days I'm stressed over my symptoms I feel so much worse. I understand it's hard but try to be patient. It really sounds like your doctors are doing right by you.

 

[molly1love]

Thanks. I feel like all they do is repeat EMGs. I have this altered sensation in my feet. I had a complete work up by the neuro at Weill Cornell originally. Every blood test under the sun. Now they just don't seem to want to pursue anything cause everything comes back normal. So he just said to come and get another EMG. A different Doc does EMG. So I scheduled an appt with my Doc after the test to see what to do he thinks its anxiety now. But I don't think anxiety can cause this altered gait I feel

 

[vickim]

have the dr watch you walk. Mine does everytime time I go (6 months). What you feel and what is, are 2 different things. It could be a muscle disease or anxiety. Be patient, it may take progression before they can narrow things down. I am 7 years into mine but it took 5 years to find out what it was. I ended up at a university hospital before they figured it out.

 

[molly1love]

How did they figure it out? If you don't mind my asking what do you have?

 

[molly1love]

I'm at Weill Cornell in NYC. Huge teaching hospital.

 

[vickim]

They did a muscle biopsy.

 

[molly1love]

They did a muscle biopsy.

Thanks going for EMG/NCV 12/10 and follow up appt with neuro. Any suggestions what to ask for? Very nice of you to take the time to talk with me. All of you❤

 

[vickim]

Tell him what is going on and let him ask the questions. You may want to ask what his opinion is, don't tell them what you think it is or that you have been researching the net. You will know what to ask based on what the dr says.