Very worried that I have ALS: please help

joy2 said:

Is it possible for ALS to start and spread this quickly. Thank you so much for your time and help.
Joy

Click to expand...

One last answer for you, because your questions are no longer worth my time and energy. The answer: maybe you'll be the one.

Hope you're luckier than I was.

Goodbye.

Joy,

You saijd you stopped oogling but ihighly doubt it. You had the mst excepptionajlly brilliant people give you advice for the umpteemth time. You blew it. Your loss, no ggain. People stop responding or jujst plaain iggnore you unttil you go away. I'm sorry we cannot help you. Go to your pcp jfor sojme anti anxiety meds, that's what you need, not us. I'm sorrry.

I am sorry Trfogey and Toto's Dorothy for bothering you and have deep compassion for what you are going through and respect for your opinions. It's not that I disagreed with them, its just that as my symptoms became worse, I got even more scared and looked for help on this forum, never intending to tick anyone off.

I have an update on my symptoms: both of my legs have constant tremors in them, twitches and muscle aches, and I am now finding it hard to walk on left leg, as it feels very weak and stiff from mid thigh to ankle. Going up stairs is difficult. Those symptoms have started in my right leg as well, but just from knee down to ankle. I have gotten steadily worse since mid January and am very worried as to what can be causing this. My neuro appt is on Tuesday. The waiting is very difficult.

All that needs to be said to you has been said. You're just going to have to wait for your appointment and ask her/him. Until then, get yourself under control. You're acting irrationally.

Ditto to Marta post!...Patience is the key, what else can you do but drive yourself crazy.

I had my neuro appt today with an ALS specialist. He did various strength tests and didn't find any of the weakness that I feel and said that my reflexes are normal. Normal brain MRI (yes I know that is usually normal in ALS) and normal bloodwork. However he said that reflexes can change from normal to abnormal as ALS progresses. He didn't seem too concerned that my legs and arms fasciculate and fatigue easily or that they cramp a lot, but has scheduled an EMG and nerve conduction tests. Even though this sounds very positive none of my symptoms have lessened. So more waiting which you all know I don't handle very well. Test isn't until beginning of May.

The neurogist also said that my symptoms sound like west nile virus, which I doubt that I have. Had blood work today for that and also for Lyme disease.

Sure does not sound at all like ALS. A clean neuro exam for ALS is a big big big Clean sign.. It is more than a little thing to be thankful for.. Relax.. I would take ALS out of my mind..

Joy,

That's what you should be doing jumping for joy. Instead, you're still thinking you have als. I believe we have told you weakness before fasciculations. And you yourself said the doctor said no weakness. Unfortunately, you will go insane if you let your mind wander here. This is not where you need to be. Honest. I would trade places with you in a second.

I know people have asked before, but why do you want to put yourself in the als box. All ready you are doubting your neurologist. Your doctor just seems to be thorough. He is covering his bases. You really should put your mind at ease. Then you'll be amazed at how your body reacts.

Good luck to you,

Toto

Hopingforcure and Toto's Dorothy,

Thank you for your kind words and taking the time to respond. My worries heavily pale in comparison to what you are all going through and my heart goes out to you. My post may not have reflected it but I am very pleased with how my neuro appt went today and I am trying to relax. I definitely do not want to put myself in the als box, but knowing me I won't be rest assured until I have the emg.

Joy,

I pray for a normal emg. And that yoyu put als out ouf your vocabulary. Please let us know of your results, we love to hear good news.

I was hoping after my neuro appt went well that maybe some of my symptoms would dissipate or even disappear, but unfortunately this has not been the case. The neuro did resistance tests and didn't notice weakness, but the weakness that I feel occurs when lifting leg up to take steps. The weakness in my legs seems to have spread from both lower legs upward to thighs making my legs feel like there are heavy weights attached to them and I am having difficulty going up and down stairs. My legs feel like they are on the way to becoming paralyzed and I have started getting cramps now in my fingers. I just saw the internal med dr yesterday who is trying to speed up my EMG. He said that it sounds like Guillain Barree but doubts that I have that because he said that in Guillain Barree your symptoms get worse within a couple of weeks and then get better. Sorry everyone, just needed to vent. Still very worried obviously.

Take care Joy, remember that there can be many causes to the symptoms you have. Your docter is right about Guiillain Barree. I hope your emg will take place soon and comes up with good results, something thet can fix! No need to say sorry, can imagine you are worried. But don't panic okay... thumbs up 4 you!

Anja

Thank you Anja, for your kind words. As you can understand, I am very worried. I seem to be getting worse everyday. Walking is very difficult now, and arms feel weaker, have constant buzzing/vibrations in neck, chest, arms and legs as well as occasional cramping and neck pain. I initially had hope when neuro appt went well, but I am a lot worse since then. Whatever is going on is moving quickly and scaring the hell out of me. Sending my support all the way to The Hague, for you. Take care, Joy

joy2 said:

Thank you Anja, for your kind words. As you can understand, I am very worried. I seem to be getting worse everyday. Walking is very difficult now, and arms feel weaker, have constant buzzing/vibrations in neck, chest, arms and legs as well as occasional cramping and neck pain. I initially had hope when neuro appt went well, but I am a lot worse since then. Whatever is going on is moving quickly and scaring the hell out of me. Sending my support all the way to The Hague, for you. Take care, Joy

Click to expand...

I can imagine this is a scary experience for you! Ask 4 thorough bloodwork too, more specific, did your docter also check for arthritis and/or other forms of rheumatism? This must also be checked!

Thank you 4 your support! Now try to relax because being in a panic state of mind won't do you any good. Be gentle with yourself and let the docters do their job, i hope you will start to improve soon! Meanwhile do your best to focus on positive thoughts okay! It is hard, I know, but give it a try and try to find some distraction, things that make you feel good, things that make you smile. It can be as small as a flower or a tree or a book or whatever! This is very important!

A hug from me to you!

Anja

well there love..u says that doc said u might have guillian barre ...but u say u doubt that...then u say doc says u might have west nile thingy..but u doubt that....so u know more than the docs...now i knows precious little bout als....but i think you got what u want...till u find u aint got it, only another 1500 deseases for u to doubt u got...and then u got it.....simples..johnny