At a lost.

[scotslassie]

@jb63. Beautifully put, and worth a lot more than 2 cents. "The Pablo Picasso of your body". Very well said.

 

[Floridason]

Saw a neurologist yesterday. Checked my reflexes which were brisk but tolerable, no Babinski sign, though my left foot isn’t as sensitive as my right one with that test. No clinical weakness, able to pass the heel to foot, walking with toes, and Romberg test. Coordination with the noes to finger test was slightly off but nothing alarming. Nothing noticeable with tongue strength.

So this is the second neurologist who’s telling me he doesn’t suspect a MND. He mentioned possible psychological involvement or vitamin issues, which are much better than having ALS.

I still can’t shake this feeling of weakness. I’ve dropped toothbrushes, nearly tripped, arms get tired quickly when holding them over my head, my bottom lip has little strength, and that NCV/EMG results still bug me a bit. But at least it’s looking to something I can work with.

 

[Anja]

That is good news! Wish i could walk on heels and toes, i can't, but i hope i can join you soon, plan a party! Make sure to eay healthy food and have a good balace between rest and being active, take care and feel happy!

 

[TedH5]

Saw a neurologist yesterday. Checked my reflexes which were brisk but tolerable, no Babinski sign, though my left foot isn’t as sensitive as my right one with that test. No clinical weakness, able to pass the heel to foot, walking with toes, and Romberg test. Coordination with the noes to finger test was slightly off but nothing alarming. Nothing noticeable with tongue strength.

So this is the second neurologist who’s telling me he doesn’t suspect a MND. He mentioned possible psychological involvement or vitamin issues, which are much better than having ALS.

I still can’t shake this feeling of weakness. I’ve dropped toothbrushes, nearly tripped, arms get tired quickly when holding them over my head, my bottom lip has little strength, and that NCV/EMG results still bug me a bit. But at least it’s looking to something I can work with.

You again state "I still can't fake this feeling of weakness"...That's just it what you have is a feeling of weakness not true clinical weakness as your recent Neuor exam showed.
Did your Dr. give you a follow up plan? If so, I suggest you follow it.

The good news is a second Neuro has confirmed you do not have ALS!

 

[trfogey]

I still can’t shake this feeling of weakness. I’ve dropped toothbrushes, nearly tripped, arms get tired quickly when holding them over my head, my bottom lip has little strength, and that NCV/EMG results still bug me a bit. But at least it’s looking to something I can work with.

You do realize that everyone drops toothbrushes (and other small handheld implements). And perfectly normal people trip and nearly fall every day. How long are you trying to hold your arms above your head that it disturbs you when your arms get tired? And, unless you are a professional musician playing either a woodwind or brass instrument, what does it matter how weak or strong your lower lip is? What is it that troubles you so much with that lip -- what are you trying to do and can't do?

Finally, why are you still going on about the NCV/EMG? It was interpreted and confirms the clinical findings of your neurologists (hint: reduced Babinsky sensitivity is on the same side as the radiculopathy -- think there might be a connection there?).

You aren't going to get well until you decide that you want to be well. All of the obvious things wrong with you have been diagnosed. The other stuff you've latched onto like an anaconda and simply refuse to turn loose. When you get tired of being miserable, let that stuff go and live life the way a twenty-something should.

Good luck to you.

 

[Floridason]

@TedH What bothers me about this “feeling of weakness” is that ALS is from my knowledge, a progressive disease. Ones things start feeling weak and you lose ability to do certain things they don’t come back. I was a lot more physically capable and dexterous going on 8 weeks ago than I am now. Thus the panic. I haven’t played sports in a while but I was fairly fit & lean. Suddenly being not able to sprint anymore because of some nerve injury that I never even remember having on a chronic level scared the bejeezus out of me. I think that’s fair right?

Trfogey: I do realize that but, and it’s hard to describe, but you know yourself better than anyone for the most part. And when you’re tripping more frequently, or dropping things, or when you take a sip of a bottled water and you can’t get your lips to squeeze tightly around the nozzle so the fluid spills from the corners or front of your mouth, or feeling silly for saying words with the “f” sound. I could go on. Driving was really bad this morning. The wheel kept slipping out of my hands and my raising my foot to alternate between gas and brake was a chore I’ve never had to deal with before.

Anyway. I’m going to go with the whole vitamin treatment and try to turn my stress levels down. Still, just for additional peace of mind, I’m going to get another EMG and blood work. I just want to be sure. Everyone says als doesnt move that fast but I just want to nip out everything thats treatable before any complications.

 

[trfogey]

Trfogey: I do realize that but, and it’s hard to describe, but you know yourself better than anyone for the most part.

Floridason,

Save the cliched hypocondriac's BS self-justifications for a dumber audience. When you have health anxiety to the degree that you have demonstrated in the past month, you cannot be objective enough to make even simple judgments involving your health. Your lack of objectivity and rationality when the subject is your body means that you don't know your body better than anyone. You think that it's sicker than the doctors do. Prove it.

Your mental picture of your health is so far away from what your doctors objectively verify that if you were my age, your spouse or children would be nudging you to the doctor to get checked for some sort of dementia. And, before you twist what I just said into "Oh, no, I have ALS and FTD", I'm not saying that you have dementia. You do, however, have a really screwed up way of processing things that relate to your health.

Anyone who trusts a medical school student over a fully trained neurologist needs to work on getting their cognitive elevator to hit all the floors, especially the one marked "I'm sick, but I'm not dying."

You keep bleating "But I know ALS is progressive." Yes, that's true. But you don't have it, so whether it will progress in you is the point at hand and the answer for you is simple -- you don't have it, so it won't progress in you.

And when you’re tripping more frequently, or dropping things, or when you take a sip of a bottled water and you can’t get your lips to squeeze tightly around the nozzle so the fluid spills from the corners or front of your mouth, or feeling silly for saying words with the “f” sound. I could go on. Driving was really bad this morning. The wheel kept slipping out of my hands and my raising my foot to alternate between gas and brake was a chore I’ve never had to deal with before.

I have a challenge for you. Take yourself and your water bottle to your primary care physician and demonstrate the drinking problem that you just described. Make a few of those funny "f" sounds for him. If your PCP sees those symptoms, it just get the diagnostic train rolling at a faster pace.

Anyway. I’m going to go with the whole vitamin treatment and try to turn my stress levels down. Still, just for additional peace of mind, I’m going to get another EMG and blood work. I just want to be sure. Everyone says als doesnt move that fast but I just want to nip out everything thats treatable before any complications.

What vitamin treatment are you talking about and which doctor prescribed it?

A clean clinical neurological exam is what you should be putting your trust in. Follow a clean clinical neuro exam with the same results as your previous EMG and it's a certainty that you don't have ALS now. You've already done that and you still don't believe that you need not worry about ALS. So, I'll expect to see you back here after the next EMG with some more new symptoms that the doctors can't see.

See you then.

 

[notme]

Good Lord. Radiculopathy in ONE path means that nerve is affected. ALS would have shown more than one path with a problem--like the entire limb.

You have an untreated spinal injury. There are tons of problems that could be causing you to generally feel weak Vitamin deficiencies are common. B-12, Vitamin D. There are issues that can cause weakness--post viral syndromes.

If your speech was slurred--the neuro would have noticed it. Why in the world you'd want to put yourself through another EMG boggles the mind.

Maybe your dad canceled the insurance to stop your obsession? Though most parents wouldn't take their kids off insurance until they were forced to by age.

 

[seaside]

Floridason,

You wrote:
"Driving was really bad this morning. The wheel kept slipping out of my hands and my raising my foot to alternate between gas and brake was a chore".

Should this dangerous driver be reported to the Florida Highway Patrol ? Or is this just more rambling of the boy who stumbled on the roller coaster that's ALS ?

 

[Floridason]

Should this dangerous driver be reported to the Florida Highway Patrol ? Or is this just more rambling of the boy who stumbled on the roller coaster that's ALS ?

:\

Really?

Alright. I made a mistake posting here. Good luck to you all.

 

[TedH5]

Floridason...your mistake was not in posting here it was in failing to heed the advice of your Dr's and the good people here who have tried to help you.

 

[Floridason]

Alright I’m back.

No, I didn’t go and get any results. I just called my nuero and arranged a follow up appointment shortly.

I’ve done a lot to get my anxiety levels down and I would say they’re pretty mild in comparison to where they were before. My symptoms haven’t improved or rather I believe they getting worst but I’m going to have the doctor determine that.

My reason for posting back is just some feedback on concerns of mine and I’ll do my best to present them in the most logical/rational manner I can.

Last week I was getting ready to make some inquires about my left leg weakness and the s1 radiculopathy. Since it was mentioned before, that’s likely the case of a pinched nerve. But what tossed a red light to me was that the emg report mentioning no evidence of a compressive neuropathy.

I’m no doctor but that seems contradictory. I’ve tried following back up with them but I wasn’t able to get any answers. Does anyone know what that might relate to? I rather not do any more google searches of fear of stumbling into something else more dramatic than I’ve already put myself through.

In other news, my general physician called and mentioned my testerone levels were extremely low, which can lead to muscle weakness as far as I’m aware of. I’m due a shot this Thursday.

-My hands are still weak and coordination is lost out of them but I’m able to snap my fingers, touch each of my digits with my thumb and open bottles. The changes I’ve noticed are that movement of these fingers are slower and far from as dexterous as before, but that could be related to the weakness I mentioned.
-Legs are really heavy but I can walk, I feel often unbalanced, even with the wind. I can stand on my toes and walk on my heels still though not as precisely as before. I’ve tried running. A jog is possible, a sprint without stumbling is difficult and I’m much slower than I was before.
-Face is still weak and I caught myself drooling while talking. Everyone thought that was funny but it bothered me. But one case isn’t something to get alarmed about. My tongue still feels stiff but no complaints about my articulation yet. I can still swallow liquids and solids without any major problems other than it feels like there’s no muscles working to bring them down. They just ‘slide’ through.

I’m still twitching all over and I’m weak. Though I’m probably only clinically weak in my fingers, which could be attributed to other causes.

I have the occasional legs, arms, and joints burn mildly, which points away to ALS. But does anything else know other causes of that?

 

[Ms. Pie]

Of one thing I am almost positive. You do not have ALS. Hope you feel better soon!

 

[seaside]

I’m no doctor but that seems contradictory. I’ve tried following back up with them but I wasn’t able to get any answers. Does anyone know what that might relate to?

Perhaps they too have grown weary of the repetition without recognition.

 

[trfogey]

Last week I was getting ready to make some inquires about my left leg weakness and the s1 radiculopathy. Since it was mentioned before, that’s likely the case of a pinched nerve. But what tossed a red light to me was that the emg report mentioning no evidence of a compressive neuropathy.

I’m no doctor but that seems contradictory. I’ve tried following back up with them but I wasn’t able to get any answers. Does anyone know what that might relate to? I rather not do any more google searches of fear of stumbling into something else more dramatic than I’ve already put myself through.

You are joking here, right?

The neuros use the term "compression neuropathy" when they are talking about a pinched nerve out in the peripheral nerves, like carpal tunnel syndrome. When the entrapment or compression occurs in the spinal column, they usually call it a radiculopathy, especially if it is accompanied by pain that seems to radiate out in the body.

You have evidence of nerve impingement in both your upper and lower left leg. That's why the prospective diagnosis is a radiculopathy -- the impingement has to be closer to the spinal cord than the nerve segments that show the symptoms. It's like kinking a garden hose -- below the kink, reduced flow of water.

You've got to be a law student. Only lawyers torture language like you do to make a case. (sorry, rcharlton)