Follow-up ALS question

[cramerb535]

As I noted before in my recent post about my fears of ALS I have a few more concerns. One is that for a month now when I wake up my and my ankle is really sore especially to walk on but after about 10 minutes of walking it off it does not bother me the rest of the day. I read today that ankle instability is symptom of ALS so now coupled with my other concerns I am scared. In addition, my right wrist is pretty tender, most notably when I am bench pressing weights. I am so scared that my joint pains and perceived weakness I feel occasionally is ALS. Most notably after seeing the neurologist I have the feeling that my right leg and right arm are "weaker" than the other side. I have tested them with wieghts and they are not actually weak, but I am not sure if this is disease related or anxiety. The twitching all over my body has gone down alot but now I have this almost weak in the knees feeling in my right side. Should I be concerned? I just find it odd that only a few days after seeing a neuro and still trying to self diagnose myself on the internet I feel this way.

[CCF-Neuro-M.D.-CS]

I wish I could provide you with an accurate diagnosis, but I can not do that over the internet. It seems that this has become a major concern in your life. When this happens I recommend that patients recieve an expert second opinion. This will help to answer the question and allow you to proceed on the correct path. I would recommend that you make an appointment at the closest ALS center for consultation. If you are in the area, Dr Eric Pioro is our ALS specialist, and he is fantastic. Good luck.

[MotherOf two]

Hi..........

I do have ALS and what you are describing does not sound at all like als...ankle instability is weakness and where muscle have wasted away..........you don't normally get pain with Als...and  if you do suffer pain it normally happens at the late stages.

Hope this helps.

[cramerb535]

Thank you very much for your responses. I am really dealing with alot of anxiety and my fears of having a disease at a young age have taken over my life. I need to snap out of this and focus on being ok rather than thinking I have ALS. I honestly will have days where I think I do have ALS but with time hopefully this will subside.

[brookes]

my best friend has als, i worry more about her then she does @ time's. her spirt's are a whle lot better then mind. good luck to all who has this horrible disease, hopefully one day soon they will have a cure for this.

[kendon]

I have a wife whow is 32 and has a rare form os soft tissue sarcoma.  We also have a 15 month old boy.  I have had what was diagnoses as Fibro myalgia since 95'.  This last year I have really had some wierd things happening with my body.  Things that just do not feel the same as the Fibro.  My back, especially in between the shoulder blades consistently hurts. Sometimes. my throat feels kind of lunmpy, sort of difficult to swallow. i was have fasciculations just about every in my body, although those have subsided some what, and do not happen as much as they were. On somedays my arms shake, especially at the elbows.  As well as the elbows hurting.  My right hand feels more tight than usual, mainly in the fingers.  My right foot consistently gets a shooting pain out the bottom, and I have been itching in the same spot on that foot on the bottom for several years now.  I havw done mri of my entire spinal cord. I have had a fusion at the c5 and 6 level.  And there is some herniation at he c4 and 5 and the c6 and 7. I also have had two emg and nvc since Feb of this year.  All have shown to be normal.  I realize that I have a lot of stress in my life, but am obsessed with whether or not I have ALS.  I am not afraid of dying, but would find it unusually cruel to have my son end up with no mother or father. I am 42 yrs of age, and Shanna is 32 yrs.I have lost 22 pounds in the last 2 months because of working out, and doing a cancer diet with my wife.  I am trying to move past the ALS, but I sincerely wish this desease had better prognoses, and I realize that it is a lot like haveing a sarcoma cancer.  Since it does not effect that many people compared to othe diseases, I am appalled at the amount of funding that goes to both for researce.  If you want to email me personally, my email is: ***@****.  Sorry about writing a book.
Stacy Martin

[kendon]

Could someone please respond to my previous post, I did not realize it was tacked onto responses to an original question.  If necessary, I will post it differently.
Stacy

[tarzinski]

wish you all were here and we would have a group hug. listen to what i say. all you people who are having als and ms symptoms better run or wheel yourself to the closet dr. to you that knows about lyme disease. good luck - you'll drive for miles because guess what? - dr's are too dumb in making the connection. my husband was told by two neuros that he had als - duh, he had lyme. you better look at the connection between als, ms and lyme disease. 60 people were told that they had als -- all tested postive for lyme by our lyme dr., that was just our dr. type in google search - als/lyme connection and see what you get. if my stupid family dr. back in 2000 would have known what a lyme bulls eye rash looked like, i wouldn't be in the hell i am right now, and my husband won't be crippled and in a wheelchair. two years of misdiagnoised lyme can do allot of damage. the alsa website does all that view it a grave dis-service. they state that other things need to be ruled out that can minick als, but they dont' say ****** PEOPLE GET A LYME TEST DONE NOW TO SAVE YOUR LIVES ******* NOT ALL LYME TESTS ARE ACCURATE AND YOU NEED TO HAVE THE CORRECT ONES DONE. We went to two neuro's that  ALSA listed as ALS specialist, and both missed the lyme disease. both dr's. was asked directly to run the test, but just didn't do it for some reason. so email me if you want to know anything about lyme. so if your having muscle twitching, muscle wasting, drop foot, problems walking, stumbling, panic attacks, dizziness, irregular heartbeats, brain fog, problems all of a sudden with you eyes, hearing, floaters in your eyes that look like worms, headaches, upper body weakness, bells palsy, joint pains, muscle pains, a pain in the back of the neck (mine is always a little to the left ) your not crazy - you better think about lyme. my husband had 3 embedded ticks from 1991- 2002, but i never did. i got my bulls eye rash up at lake erie from deer fly bites in 2000. president bush signed public bill 107- 116  jan 10, 2002 - to get the cdc off their butts and get the public and the medical community educated of lyme disease. well guess what - no one still knows anything about the 2nd fastest growing infectious disease in our country - 2nd only to HIV. Seems like no one cares. our insurance company fortis health - milwaukee, WI -  will not pay for my husbands antiboitics stating that treating late stage lyme with anitbotics is experimential and nonconclusive. bull **** - it just costs over 200.00 per day for this anitbotic and they don't want to let go of the money. als/lyme - yeah how much money is rasied every year for als research... can you guess how many trillons of dollars - every year - no cure - people die- do the widows, and children get the money ????? so think about it, you can donate blood and not know that you have lyme disease - they don't test donor blood for it - and guess what, you just passed it on. may 2002 - big news - minocyline slows down and or stops the progession of als symptoms in lab mice with als. this is an antiboitic -slows down als. i asked both of the neuro's that told my husband that he had als - please can we start with the abx that helps als ???? both said NO, it's not on the FDA approved protocol in treating als. guess what  ????  you can take the stuff for years if you have pimples on your face, but you can't take it for als that will kill you in 3-5 years. something is wrong with all of this people. why is the government and the medical community trying to hide lyme disease ?????????????