At a lost.

[notme]

Ask the doctor when you go for your results.

 

[Floridason]

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

English Major, originally for journalism but I've considered changing it to something more practical in the workforce like business or computers.

Anyway no, I wasn't joking. Again, since I've refused to look up any more conditions, symptoms, or terms I didn't know what difference they made between a compressive nueropathy or a radiculopathy. Thanks for clearing that up.

 

[Toto's Dorothy]

Just my 2 cents, but go for the computers technology route. A business degree won't take you too far in this bad economy. My SIL graduated 2 and one half years ago, with a degree in Business, Finance and Marketing. He still hasn't gotten a job close to where he should be. JMO

 

[notme]

With an English major--if you like kids--consider teaching Getting a special license to teach with 3 years to complete the rest of the certification. FL is one of the states desperate for teachers.

I taught English in high school while I finished my coursework for my teaching certification several years ago. No matter what the world does--we will always need teachers.

 

[Floridason]

I can't take it.

The chances of me having ALS at my age is what? A million to one or something? ALS doesn't attack the whole body at the same time as it's doing me right? It just doesn't make sense. The hallmark of ALS that it doesn't come and go, but it seems my speech has episodes where I talk just absolutely fine and then I sound like all of my words are muffled and wet. Even my mother noticed it now.

I'm twitching all over in places where there isnt atrophy. Face, ears, stomach, and other places. I've tried testing my own knee reflex. They were brisk before, where they would make Bruce Lee proud. Now they're kinda dull. But I can still walk, even jog a bit before I nearly fall over. My lips are so stiff right now. I can barely pucker them, whistle, wrap them around a straw.

There's no way that Two neurologist, Two general physicians, a Pain Doctor, and their various aides/assistants, would miss something like ALS in a patient. No possible way. Even if you didn't know what to look for, you'd at least see something was definitely wrong.

Does anyone know what's going on or heard of anything moving like this? This is way beyond just "anxiety symptoms". So far the only encouraging things I've haerad from my GP is that my vitamin D was low as well as low testosterone, which I've heard can leadto muscle weakness. But would it be this profound? I just want to be alright and move on with my life, but now these symthoms are starting to worry the folks around me

 

[Toto's Dorothy]

Fl, I don't want to sound harsh, but the people around you are probably worried about your sanity! You need a grip and a reality check. I don't think we can help you, although we have tried.

Good Luck to You and Especially Your Doctors,

 

[Floridason]

So when people come to these boards and post, is the usual method of approach is to just belittle them into the ground?

You don’t sound harsh, just inconsiderate.

There is atrophy on my hands, ankles, and calves. My voice is horse and my swallowing issues are coming back up, my lips are stiff, fingers have lost both dexterity and coordination, my wrists are floppy, even toes are weak. My jaw is weak and it’s taken me much longer to chew foods.

My tongue can move though my mouth, but hardly with the strength it used to. How do I measure that? Because there’s a chipped tooth in the back of my mouth I used to be able to reach and now I struggle to.

I have no Hoffman sign, no Babinski, no Jaw jerk, no clonus. My knee reflexes were brisk, but now they’re fairly diminished. I can still stand on my toes, walk on my ankles, and do a few pushups. But everything is moving in slow motion.

I used to be a great sprinter and even able to pull off some free-running maneuvers. Tried that this morning-absolutely impossible. Not that I was clumsy, I just could not do it. I tried getting into a sprint and was not able to get my toes, stride, or even my upper body to the position of being able to.

These things point towards the direction of a terminal illness that statistically, should be like one in a million chance of me getting before 40, even more so without any family history. Top it all off, these symptoms are progressing faster than any of the cases I’ve read about.

And I’m in the wrong for being scared/nervous/hysterical? I need a grip and reality check?

I just want to know what could be causing all of this, how to treat it, and so I can get on with my life. That very life that I’m obviously so paranoid in preserving. My doctors are unresponsive and take forever to give me any kind of feedback other than "I'll look into it." or "come in for testing next month."

If there’s anything shaking my sanity, is that I simply don’t want to die. At least not at 23 years old from a rare disease that typically targets middle age persons that has no cure and diminished quality of life until it ends.

 

[laurel]

It could be a virus. Lots of GBS patients had a viral attack. That is the most likely scenario.

 

[jb63]

I have to add my opinion here.....

EMG did not mention MND which shows up before most people have symptoms.

Stop playing doctor, you cannot objectively test your reflexes.

If you concentrate on body parts and systems long enough you are bound to see, feel, etc things that happen everyday to people who are not sick. We ignore them.

We are not rude or harsh, just trying to give you directions and advice. You seem to be beyond hearing us, so some of us are hitting you symbolically on the head to knock some sense in you. BONK

Your symptoms could be several things going on that are not related.

 

[seaside]

It appears you've started aquiring new symptom ideas from watching television. Those late night tv ads for testosterone pills promise muscle building, but you've reversed this premise to support your "atrophy" by way of low T. After reviewing the side effects of a testosterone shot I was shocked that you would go ahead with this treatment. Did you get the shot on Thursday? Another new wrinkle you've added is this "free-running" ability you seem to have lost. I had to look up free-running, and when I found the alternate name parkour I remembered seeing that on Comedy Central's Tosh.0 not too long ago. Any chance this is where you got that idea? I'm asking because coincedentally the program was rebroadcast just last night.

 

[Floridason]

I’ve asked the doctors to check my blood work for viruses and such, when I got my results regarding my vitamin D, they said they didn’t find anything. Though I don’t know which ones to press them to look after. I'll ask them again though.

Jb63

I understand about that, where if you look for problems and deformities long enough you’ll start perceiving things. The mind playing tricks on you and all that. I REALLY want that to be the case for me, but evidence is pointing towards that it’s not.

I’m really trying to listen to everyone’s advice, don’t get me wrong. I come back to this thread or others to read that I should have nothing to worry about, get on with life, and enjoy things as I used to. I’ve had two neurologist tell me they don’t suspect ALS in the least when I had my clinical exams and the person who did the EMG didn’t suspect ALS either.

I just don’t know why my symptoms are progressing “like” ALS but at a rate that’s unheard of. And my doctors won’t give me any answer but, and I mean literally “Well, if things don’t improve in a month, come back and see me.”

Really :|

I may be terrified and such, but not so much to the point where my scope of reality is so skewed that I can’t tell the difference between difficulties caused by anxiety and a gradual loss of function/capability because of something potentially malicious.

Seaside: What are you talking about?

My doctor told me I had a T level of 120. From what he, the GP, told me, that’s really low and could cause complications. He, not me reviewing the internet, told me that could relate to my muscle weakness. Didn’t say how severe, but that was from his words-not mine.

Why did I go with the treatment? Because I want to get better. I want to stop being weak. Make sense?

And no, I don’t even know which program you’re talking about. I haven’t watched comedy central on a regular basis since the Chappelle show was taken off. Are you that adamant on trying to devolve all my complaints into mentally acquired symptoms from television and imagination? I have videos and pictures of my own stunts. Why in <insert religious figure here> would I remotely peel that from a television reel?

In any rate, as long as this isn't ALS(or something equally malicious) I'm fine. I just desperately want to know what's ailing me, how to fix it, and then I'm out of everyone's hair. If folks have suggestions on what that may be, if anything so I can push my doctors to find out and get my treatment, I'd appreciate it.

 

[jb63]

Florida,

It is a waiting game.Iget told to come back in 3 months for eval. That's how they works. They watch for progression. It took my doc 12 months to give me a diagnosed and even then it changes. It is doubtful you will get an answer soon.

 

[Luke]

Hang in there, man. I'm in a similar boat, albeit with clinical weakness in my tongue, neck and diaphragm. Remember too, that no matter how scared we are or how bad we think we've got it, the audience we're addressing on these boards is largely of people who truly do have the debilitating disease we're worried about, and it's selfish of us to look to them for reassurance of our health worries. I made the same mistake here myself and quickly realized it. Fortunately, the community here is very welcoming and still provided words of support. Bottom line is, I'm more calm and collected now, in the face of a potential for actual illness, than I was before. That part is a mental game, and it takes work. Maybe in realizing I might actually have something this time, it kind of sobered me up. If this turns out to be the real deal, I'll regret wasting my youth worrying, so try to learn from that. If this turns out not to be something serious, I'll consider it the most terrifying rollercoaster of my life but also the greatest lesson in the world. Good luck.

 

[trfogey]

I understand about that, where if you look for problems and deformities long enough you’ll start perceiving things. The mind playing tricks on you and all that. I REALLY want that to be the case for me, but evidence is pointing towards that it’s not.

Really? Which symptoms, identified and verified by which doctor, point to ALS? Which doctor has specifically identified ALS in his/her differential diagnosis and what was that doctor's specialty?

The same arguments that you use to point away from a mental problem are the same arguments that point away from your condition being ALS. It's your insistence that you have ALS that is the problem. You have at least one problem -- probably several problems -- that you are trying to tie together into a single explanation: the proverbial square peg in a round hole.

I’m really trying to listen to everyone’s advice, don’t get me wrong. I come back to this thread or others to read that I should have nothing to worry about, get on with life, and enjoy things as I used to. I’ve had two neurologist tell me they don’t suspect ALS in the least when I had my clinical exams and the person who did the EMG didn’t suspect ALS either.

Three medical professionals who are trained to recognize the symptoms of ALS tell you that you don't have it. Yet you want to keep making the argument that it is ALS. As in:

I just don’t know why my symptoms are progressing “like” ALS but at a rate that’s unheard of. And my doctors won’t give me any answer but, and I mean literally “Well, if things don’t improve in a month, come back and see me.”

That's not the only answers that your doctors have given you. Your symptoms are not progressing like ALS because your doctors have told you that you don't have ALS. Those symptoms are progressing like they should for the condition(s) that they represent -- unknown at present, but not ALS.

How about "your symptoms are progressing like an S1 radiculopathy, complicated by BFS and an extreme case of health anxiety".

I may be terrified and such, but not so much to the point where my scope of reality is so skewed that I can’t tell the difference between difficulties caused by anxiety and a gradual loss of function/capability because of something potentially malicious.

As long as you continue to insist that your current condition relates in any way to ALS, your grasp on reality and your capacity for rational thought are questionable. But it's your body, so do as you please with it.

I've done all I can (or will) do to help you, so I'm signing off with you and I suggest that other members do the same. The only advice you need right now should come from medical professionals who have done the requisite tests and examinations to support the conclusions that they give you.

Good luck to you.

 

[TedH5]

So when people come to these boards and post, is the usual method of approach is to just belittle them into the ground?

You don’t sound harsh, just inconsiderate.

You have a post in the Do I have ALS forum that has gone on 5 pages. Your Dr's have told you that you do not have ALS. People with ALS or dying loved one's have answered your questions over and over again, you refuse to listen, you come back with new symptoms constantly that do not make sense to us and you feel we should have all the answers because we have ALS or have loved one's who are dying or have died fom it.

Since you are not really interested in our answers, let me ask you a question, given what I and others have outlined above who is truly the inconsiderate one?

We can't make you listen to us but we are not going to allow you to insult our members because you refuse to listen to your Dr's or to are unprofessional opinions and can not seem to control your anxiety.

Perhaps you are spending too much time in the Florida sun...