A Bit Worried

[Concerned1]

Hi all,

First of all, I've been going through the forum reading for some time and I'm really impressed with the level of knowledge, support and understanding going on here. Pretty amazing!

I've been experiencing some symptoms lately that have me a bit concerned, if anyone might be able to offer any insight/advice that would be great. Anyway, here it goes:

Me: 29 years old, law student, some minor health issues in the past few years but nothing too serious.

Mid-December 2008: Noticed hoarse voice, tender throat (felt like a tender thyroid gland);

Same time: tongue felt 'sandpapery', visibly scalloped, moderate white coating.

Same time: started noticing shaky hands, more of a postural than a resting tremor, not too severe.

Same time: weight loss - looked thinner through the mid-section and around the ribs. I'm not overweight in the least to begin with so this was pretty noticeable.

Same time: pretty severe fatigue off and on, worse after meals and in the morning (I've had bouts of this in the past though so not sure if related to this group of symptoms).

Went to family doc, did some blood work, all normal (including thyroid free T3 and T4) except for slightly elevated total and unconjugated bilirubin (likely Gilbert's Syndrome);

Last week (Mar 2009): right calf muscle felt 'tight' and slightly weak. Has felt like this constantly since then.

Today: went for a 10K run and felt pretty good, no noticeable sensations or weakness in the right calf. Once home, however, started noticing consistent twitching in that same calf muscle, with some twitching in the right foot and just above the knee. Also noticed some lessor twitching in the left leg.

Ok, well, that's about it. Something else that may be worth noting is that, while I had heard about ALS in the past, I did not know what the symptoms were until I began my internet research over the last few days. I was struck, though, with how well my symptoms seem to fit with the onset of bulbar ALS...pretty scary actually.

I have a doctor's appointment in a few days so we'll see what she suggests (going to push for a neurology referral).

Anyway, in the meantime, if anyone wants to chime in with some thoughts as to what might be going on with me it would be greatly appreciated.

One question I have is whether it's likely that bulbar symptoms would progress as quickly to the limbs as my symptoms suggest (2.5 months between hoarse voice/tender throat to stiff/twitchy calf)? I'd have to say that my voice seemed to get better for a while, then worse. It hasn't gotten noticeably worse from when it set in initially though.

Also, does it make sense that I would be losing weight in certain areas before the onset of any other symptoms? i.e. twitching, cramping, weakness, etc.?

Thanks everyone for reading!

 

[GlenBrittle]

Hey Concerned,

Even though we have some knowledgeable and experienced people on this sight , I must warn you , from experience , not to believe everything you read from the internet.

There seems to many different variations of MND, and its best to see that neuro you are thinking of before getting too upset about what you might or might not have.

Doing a 10K run , gawd , I cant run 10 feet. ( kinda jealous )

 

[wright]

I'm not really sure what you have been reading on the internet (actually I do . . . a bunch of crap, which the internet seems to have an abundance of) but if you came-up with ALS after the scenario you just painted, I would turn-off your computer now. What you have shared doesn't point toward ALS in the least. You are in law school for a reason: keep that as your focus of expertise and leave the medicine to the professionals. Relax in the meantime.

 

[Concerned1]

Thanks for the comments guys. I do try to acknowledge the risks involved with attempting an internet diagnosis (probably never a good idea). Nevertheless, I try to be as rational about it as possible and try to avoid drawing conclusions that aren't there. In any event, I'm still concerned about the hoarse voice and twitchy/weak calf, I guess I'll just wait and see how things progress. Thanks for your reassurance though, it's greatly appreciated.

 

[BethU]

Concerned ... as Wright pointed out, your symptoms do not at all point to ALS, bulbar onset or otherwise. Bulbar almost always starts with slurred speech, followed some time later with swallowing difficulties of various complexities. A hoarse voice with no other bulbar symptoms is not an ALS symptom that I have ever heard of ... although my voice now sounds a little like Darth Vader in drag, my speech went first, and it's taken a couple years to reach this point.

A sandpapery tongue is not a bulbar sympton (or any other disease) that I've heard of, and a scalloped tongue is pretty common in the whole human race ... it's imprints of your teeth most likely. A white tongue is not a bulbar symtom. It calls for a trip to the dentist.

Wright said it all better, Listen to him, he knows whereof he speaks.

(If you're worried about the hoarseness and it doesn't go away, check with your doctor. There are conditions that cause this. ALS is not one of them, but that doesn't mean something else might not be going on.)

 

[Concerned1]

Thanks Beth, I really do appreciate the reassurance. I'm going to consult my doctor to get this worked out and, in the meantime, will stop worrying.

Thank you all for the peace of mind.

I wish you all the very best.

 

[Concerned1]

Went to the GP today and explained my symptoms. Though he didn't notice any weakness he did think my reflexes were "a bit hyper".

So a hoarse voice, weak right calf, widespread fasciculations, and 'hyper' reflexes --- how concerned should I be?

The doc is going to refer me to a Neuro and ENT but I may be waiting several months before I get in to see them. In the meantime I need to figure out how not to worry. Thanks for any advice or thought regarding my symptoms.

 

[joelc]

Honestly?

Not At All.

Also, what amount of worrying will help? That is not a trick question so please try to relax as stressing about it will cause you problems!