Mother died with ALS, am I next

[fortune500]

I need some objective help. I had an ruptured appendix removed in November 2010 followed by a Cdiff infection. I then started experiencing pins and needles in my hands and feet, numbness in legs and numb arm when waking up and the numbness would last all day sometimes 2 days.

4 weeks ago I was admitted to hospital with Tachycardia of 130 and two fever spikes to 39c. I spent 3 weeks in hospital and was not diagnosed. While in hospital I developed widespread twitching. Significant on both legs but elswhere as well. The day the twitching starting was like my legs were very very weak. Since then the twitching has stayed and my weakness is worse. If I run 20m my legs are very sore the next day. Today my twitching is as usual non stop and I have developed cramping and stiff legs and mobility is going to the point of limping while walking. I have tongue twitching and swollowing difficulties like a lump is in the throat. My left thumb is also starting to get weak. I have an EMG scheduled for next Wednesday.

Can anyone indicate if the progression that I have seen over the last 3 weeks is indicative even in a worst case scenario. I have had leg weakness around knee for many months but since the twitching started my legs are stiff, cramped and I have lost 13 kg in the last 2 months.

Any advice

Thanks

 

[Alyoop]

Gosh you have been through a lot. It thankfully sounds nothing like ALS, but you have had an operation and an infection both of which can spark off things like Guillian barre syndrome. They will get a better idea after the EMG. Best to leave it to the doctors and keep ALS off your mind. No need to have to handle even more stress. Best of luck, I hope it all goes well for you
Aly

 

[Blizna]

Widespread fasciculations sometimes followed the systemic infections, which you had.
From the description of other symptoms, I really do not believe ALS would be so quick - bulbar and limb issues in a few weeks. It takes months for the symptoms to progress.
It does sound like some problem but not ALS. Could be neuromyotonia / GB syndrome as mentioned by Alyoop, but we are not doctors here. Wait for the EMG but do not fear ALS.

 

[pudge44]

I would wait till you had the EMG your body has been through a lot! it might be reacting to it all now, my husband has bulbar onset als and his took a few yrs of twitching, severe legs cramps, a little weakness before he got speech and swallowing issues and a diagnoses, what has happened to you sounds way to fast for ALS, ALS is like a stealth bomber you cannot see it coming and then suddenly boom, I wish you the best & hope you feel better soon.

 

[Blizna]

Pudge44: Sorry to ask..you said your husband had twitching for years and leg cramps before he developed bulbar onset of als. That could worry some of us who twitch for years and were told it is surely benign. Could you please provide a bit more info? Was his fasciculations widespread/localized? Nonstop/intermittent? etc..thanks

 

[fortune500]

thanks for all your replies. is it heard of to twitch all over the body 24/7. ie stomach, arms, legs, back. Any form of mild activity results in worse twitching and cramps/ leg stiffness particularly hamstring

 

[pudge44]

To answer your question many people have the twitching of muscles and leg cramps, the key is do you have "weakness"? did your EMG show muscle weakness in 3 or more places? this means a dirty emg, you could have twitches the rest of your natural life but not have the devastating diagnosis of ALS

P.S. twitching was in his thighs, he could not feel it but could see it if he looked down, he has fasculations on his tongue when you look but he cannot feel it his one arm will twitch, my hubby has had 2 dirty emgs one after the other, I am so angry he has ALS I Am so devasated he will die from this, if he had twitches the rest of his life without losing his speech and mobillty and breathing I would be over the moon.

 

[fortune500]

Ok, visited neuro and he said "no clinical ALS seen today". He noted deep tendon reflexes were mildly symetrically increased with some minor propagation. All other tests OK.

I also had an EMG and nerve conduction test. Both were fine.

So to sum up:

I continue to have widespread twitching particulary legs
I continue to have leg cramping which is constant on standing

Should I be concerned about the hyperreflexia?

 

[Blizna]

Not being a doctor but symmetrically increased reflexed, as well as positive hoffman sign bilaterally are often present in young people. I too have increased (slightly) reflexes and was told numeral times its due to my nature - I am anxious person, I always was.

 

[trfogey]

If your neuro isn't worried about you having ALS, you shouldn't be worried about it either.

Determining whether someone has hyperreflexia is often more of an art than it is a science, unless the reflexes are extremely increased. Once again, follow your neuro's lead.

 

[Marjorie R. Wilcox]

You might be just exercising too much and getting too nervous about inheriting the disease. Please try to trust a neurologist to
test you and listen and believe what you find out. It's easy to say, but don't borrow trouble. I'm not a professional, but I doubt
you have anything but stress and overtiring of your muscles. Take care.