Now I'm scared

[laurel]

Peripheral Neuropathy

I thank all of those that have recently written to me in this thread . . . BUT . . . I am doing relatively fine.

I started this thread nearly 10 months ago back in January. This thread was just resurrected by L4dybugg a couple of days ago (again L4dybugg, there was absolutely nothing wrong with that). It was my second post and my knowledge of ALS and all that goes along with it was still subpar at the time. My symptoms had just started and I had no diagnosis.

I have since been diagnosed with a rare peripheral neuropathy (this happened some months ago). It did present itself initially in a similar manner as ALS but it turns-out it wasn't: I had painless weakness (later I suffered from neuropathic pain . . . and I still do), followed shortly thereafter by muscle atrophy and fasics. All I need to do is simply be patient and wait to heal.

Thanks again for all of the concern, though. That is certainly one of the things that makes this site so wonderful.

Hi Wright,
Are you getting any treatment? IVIG, steroids, etc.? If not, does this mean you had something like a virus attacking and it is not ongoing like an autoimmune disease? If I'm being too intrusive just ignore me.
Laurel

 

[jd10]

Ive seemed to have lost my post on this thread?

 

[wright]

Laurel

I am not getting any treatment at all. They're not sure what causes the neuropathy I have but it isn't really progressive (flare-ups can occur and they certainly have), so it is basically treated by being patient. The leading theories are viral or autoimmune but nothing has been proven. It's no picnic to have it but I won't complain given what other people are going through on here. Thank you for asking.


JD10

I think Al replied to your post by saying it doesn't sound like ALS. I would have to agree with him. Go get evaluated by your physician and I'm sure he/she will point you in the right direction.

 

[jd10]

Hi JD. Welcome to the forum. I have not been Dx with ALS but have found this place a saving grace. How long have your symptoms been present and do you have any other symptoms? If it was sudden onset I would suspect it to be a viral or autoimmune process...those of course are only guesses. Are there any free clinics in your area>?

Cindy

ive had the constant leg twitching for about 2 weeks now. How would you explain Sudden onset? just one day i noticed my legs twitching every second. It doesnt stop at all night or day. I guess other sypmtoms would be small lesions on the leg that wont go away. they will scab over but wont go away.

How would you all describe Weakness? would it be described as the feeling you get after lifting weights?

i was diagnosed with the herpes virus about a year ago, but i take my meds for that but the fascs dont slow up any.

 

[jd10]

i found my first thread lol...

It gets hard to even do work aroung the house without my knees and legs feeling week

 

[jd10]

Hope Everyone had a good weekend.

 

[BethU]

Smoke

Hi ... I'll highjack this post to say that the air is really getting bad in L.A. We're about 4 miles south of the Porter Ranch fire, and the smoke is ghastly. I don't know how you firefighters do it! All our little feral cats are covered with ashes. You can't see the ashes in the air, but everything gets covered with them. Tried to get the kitties into the studio, but they have their little hiding places.

PDaddy ... I imagine you're getting a lot of smoke from the Little Tujunga fire. You OK?

Back to the thread:

Someone asked: How would you all describe Weakness? would it be described as the feeling you get after lifting weights?

For me, weakness isn't a "feeling." My arms and hands feel perfectly normal, and it's a surprise every time I find something new that I can't do that I've been doing all my life. It's a constant adjusting downward ... I find that I can't lift a full kettle of water any more, so I only fill it half way. Can't lift my big fry pan, so use a smaller one, etc.

I've done a very little lifting weights, and I would describe that feeling as being tired and sometimes achy afterwards.

Maybe it's different for other people ...

 

[Zaphoon]

Beth,

Good explanation on the weakness thing. Lifting a gallon of milk or a full 12 cup pot of coffee has become troublesome for my right arm. Lifting things above my head, even light things is difficult.

How about this for a definition of weakness: You just aren't as strong as you used to be. Hence, you are weaker. :-D

Zaphoon

 

[lydia]

on weakness

I also have difficulty with the gallon of milk and the full coffee pot. And the laundry detergent. And the 2 liters of pop. Have to use two hands. Can no longer lift a 40 lb bag of soil, but can drag it (until bag breaks all over driveway ). Have not been able to go up one lousy step with a laptop bag on shoulder-it is like the straw that broke the camel's back. Do these difficulties even matter to doctors? or does it all boil down to whether or not you can resist their pushing exercises in their office? My doctor (three months ago) described my weakness as subtle, when I think it is profound. I know it can get worse, as described by many on this forum, but how bad do you have to be before they go 'oh my you really are weak'....I think it was Robert who described those exercises with neuro as being ones he could "win" even on a really bad day; especially when his neuro is this little bit of a thing. I feel like this is just getting ridiculous...how bad before they really really believe it? My first neuro and I are about the same size and both women. My new neuro is over 6 feet and male. I wonder how I'll fare on the latest strength tests...

 

[BethU]

You know what's crazy about doctors and the concept of weakness ... with myasthenia gravis (my 3rd diagnosed), doctors discount any patients who report that they feel tired or exhausted. If you don't specifically describe your problem as "weakness," they simply discount that symptom. Or so I've read on a MG forum ...