Muscle Weakness and Fasciculations

[unsure]

Hi all,

First, let me thank each one of you for your patience, advice and support. I posted here about 2 years ago when I first started experiencing symptoms. I went to my GP because I was experiencing muscle twitches, loss of balance, and weakness. I was sent for an MRI which showed 3 areas of T2/FLAIR hyperintensity -- two in the periventricular white matter and one at the inferior left frontal lobe. I was tested for Lyme Disease, MS, Lupus, and host of other autoimmune diseases and ailments, all of which came back negative or inconclusive. My symptoms have since persisted and are as follows:

-Muscle weakness in both legs and feet; legs feel stiff and like rubber
-Muscle fasciculations in both legs and feet; feels like worms moving around under skin
-Muscle cramping in feet; two far left toes cramp and turn down
-Muscle fasciculations on tongue and in throat
-Hoarseness and lump in throat sensation

I am unable to schedule another appointment with my GP for a few weeks, so until then I worry. Any information or input is greatly appreciated.

Thank you,
Carol

 

[trfogey]

When you say "weakness", what do you mean? Describe how this condition "weakness" affects you.

And, get yourself a new GP. Any doctor who would leave a patient hanging without a diagnosis or a referral to a specialist for "a few weeks" doesn't have your best interests at heart.

 

[unsure]

Hi trfogey,

My weakness is felt most in my legs, primarily in my left leg. It feels like my legs are made of rubber, but my left leg also feels stiff, if that makes sense. The rest of my body will feel fine, but my legs will feel very fatigued. Occasionally I will be sitting still and will get the sensation that my leg is paralyzed, and it will take a split second longer than normal to actually move my leg, as if I have to consciously will my brain to move my leg. Add in the fasciculations and occasional spasms, and it makes for a very uncomfortable and unsettling feeling.

Thanks,
Carol

 

[hjlindley]

Get thee to a neurologist. UVA has an amazing neurology team. Not convenient to NOVA, but they plugged along with me for 4 years untili a definative diagnosis. No stone left unturned. The devil you know is so much better than the devil you don't know.

 

[Lobster]

At George Washington University, a 10 to 15 minute drive from you, there is Dr. Bayat who is the head of the ALS clinic. At Georgetown, a 15 minute drive from you, there is Dr. Sirdofsky, head of the clinic there. And, of course, there is also Johns Hopkins University, an hour away, with Dr. Rothstein, among others...

If you think you may have ALS, or another serious neuromuscular disorder, stop wasting your time with a general practitioner. I agree with hjlindley: Go to a neurologist who can help you.

 

[unsure]

Hi hjlindley,

Thank you for the advice. I do at least live within driving distance of UVA, so that is a viable option. Is it common for someone to have ALS-like symptoms for years before being officially diagnosed? I know that ALS is a swiftly-progressing disease that can take its toll in as quickly as 2 years, but I am also seeing that many people suffered their ALS symptoms for years before being diagnosed, such as yourself who had to wait 4 years for an official diagnosis. Forgive me for my ignorance if that is a stupid question. I am just wondering if it is possible for me to have experienced these symptoms for the past 2 years without a diagnosis and without severe disability at this point. At what point did you notice a marked decline in mobility over the course of your 4-year diagnosis process?

Thank you again.
Carol

 

[Alyoop]

Carol, it does not sound like you have ALS at all and a feeling of tired fatigue legs is not weakness. Weakness is usually first noticed when out of the blue you suddenly cannot do something. It's a lack of action rather than a feeling of fatigue. You have not explained what happened regarding the abnormalities on the MRI. Maybe that is the cause of your issues and needs to be addressed again. As the others said, get a review from a neurologist.

 

[trfogey]

My weakness is felt most in my legs, primarily in my left leg. It feels like my legs are made of rubber, but my left leg also feels stiff, if that makes sense. The rest of my body will feel fine, but my legs will feel very fatigued. Occasionally I will be sitting still and will get the sensation that my leg is paralyzed, and it will take a split second longer than normal to actually move my leg, as if I have to consciously will my brain to move my leg. Add in the fasciculations and occasional spasms, and it makes for a very uncomfortable and unsettling feeling.

What you are describing is nothing like the weakness found with ALS. With ALS, your leg wouldn't "feel" like it is paralyzed -- it actually would be paralyzed, permanently and not intermittently.

Apparently, your symptoms cause you more emotional distress than they do actual physical disability. That's another thing pointing away from ALS.

Finally, you've obviously read about how quickly ALS progresses. Doesn't that information about the normal course of ALS demonstrate that what you have isn't ALS -- the fact that your "symptoms" have been going on for more than two years without your being substantially crippled by now? Don't insult our intelligence by hypothesizing that maybe you are a slow progressor. You are a non-progressor because you don't have ALS. Plain and simple.

The best thing you can do for yourself is to stop using your computer to try to do your doctors' jobs for them. But I bet you won't, so enjoy torturing yourself by worrying about a disease you don't have and aren't likely to get.

Good luck to you.

 

[unsure]

Thank you very much to all of you for taking the time to respond. I will be following up with a new GP and a neuro. Everyone's advice was appreciated more than you know.

Best wishes,
Carol