Atshack's questions and comments

[Atshack1234]

Hello I have had the same exact symptoms as you have been having..Did youbgey any answers..My appt with Neurologist is on the 3rd of Feb.

I have had a EMG only of my legs feet etc.. the doctor claims it was normal..Didn't see one twitch ..Is that all the look for in EMGs. He didn't take up to much time with me And dismissed the thought of ALS..I have a ton of ALS symptoms. started in my right foot and calves weekness and cramping moved up into the back of my knee was getting and twitching all over uncontrollably..then up to my right shoulder my other side with in 2 weeks starred the same process.. My muscles in the front of my neck spasms ,very painful..I bite my tongue,it feels.like aI have a ball stuck in my throat.. Whem trtimg to slrep i habr a jerking in my face clanking of my teeth and jerk limbs ..I choke on my own phelm, I am horse all the time. My shoulders hurt so bad I can't even hang a pair of pants on a hanger with it hurting.. My son stretched my arms back yesterday to give me some relieve and my left shoulder popped and I felt the nerve shoot down my arm to my wrist..I just want answers... I am getting weaker by the day..And not to mention in pain.

Summertime7711 have you been to any appts since your last post or received any answers. I am going through the exact same thing.. I live in VA.Is John Hopkins a good place to start?

Mod note: sorry everyone if this looks confusing. Atshack you have been posting on multiple threads in and out of the do I have ALS subforum which is against the riule for undiagnosed. I have merged your posts and started a new thread. Please ask your questions on this thread. Please also read the sticky thread at the top of this subforum. Read before posting. It contains much information and the posting rules and guidelines. Thank you

 

[Nikki J]

Yes Hopkins neuromuscular physicians are excellent. If that is where you are going you are lucky. They are often the second or third opinion doctors

 

[Vincent]

The fact you are experiencing pain points away from ALS. I can't count the number of times I was asked if I had any pain. I don't have pain, stuff just stopped working. The lack of pain seemed more significant than the other symptoms to the Drs. So if you have pain you DO NOT have ALS.
Vincent

 

[Atsugi]

- twitch...Is that all the look for in EMGs <> Neurologists see very many things in EMGs.
- EMG only of my legs feet...the doctor claims it was normal <> A normal EMG is considered proof of NO ALS.
- dismissed the thought of ALS <> Maybe you should also dismiss ALS.
- ton of ALS symptoms <> You didn't list anything that means ALS.
- right foot and calves, back of my knee weekness and cramping <> Could be many conditions that cause weakness and cramping.
- twitching all over <> Twitches are common in many conditions. Healthy people twitch, too.
- right shoulder my other side with in 2 weeks <> Seems too fast for ALS.
- neck spasms ,very painful <> Overall, just doesn't sound like ALS.
- bite my tongue <> Nothing to do with ALS.
- it feels like I have a ball stuck in my throat <> Not ALS.
- choke on my own phelm <> Not neccessarily ALS.
- I am horse all the time <> Absolutely not ALS.
- My shoulders hurt so bad <> You're a wreck, but not from ALS.
- getting weaker by the day <> Vitamins, diet, virus?
- in pain <> My wife didn't feel any pain at all until she was so disabled she was confined to a wheelchair.
- Neurologist is on the 3rd of Feb <> Good. Keep this appointment.

ATSHACK, I'm sorry you're in such pain, but I just don't see ALS in your future. While you're waiting for your appointment, search for some other more likely cause of your problems. Don't worry about ALS.

 

[Atshack1234]

Mike thank you for your response. I am not sure what is happening to me but just like many you go to the doctor and its a process of elimination. It has been two months..I in the last 9 months have indured several panic attacks..Headaches which ended up being sinuses. I had been very fatigue,dizzy, irritable waking up several times a night,muscle and joints aching. I finally couldn't take it anymore my doctor sent me to a Neurologist due to my headaches that he couldn't get under control. After a month of fighting these headaches Clararin cleared it up thanks to my pharmacist suggesting it. So Neuro doctor did a MRI saw sinus issues and a little bit of white lesions which she dismissed as nothing. Days after leaving. Her office I stated twitching which started in my calves with spams to follow then started twitching on my knees then feet hands belly back buttock you name it.. I also habr muscle spams on my neck. What scares me the most is I can't sleep anymore. I try to sleep and cant fall alseep into the next phase of sleeping I have leg and arm jerks and jaw jerks..Those are really scary. My doctor has put me on Ambien 10mg and still I still can't get to sleep have to take a benadryl or a muscle relaxer along with it just to get to.sleep..And I still wake up several times..Mike I am a mess..I am a Mom of 7 and I am so confused to how all of this came on all of a sudden... Sorry for burdening you guys with my issues just not sure who to ask so many people say so many different things about ALS and the beginning symptoms..Like me being horse along with my other symptoms sound like ALS. Thank you again for a bit of insight on this..Looking forward to a answer.

 

[Atsugi]

Well, first, Atshack, you can put ALS out of your mind. That's not your problem. I think you know that by now. As you said, you're a mess. I understand where you're at.

I know you've been looking for answers in ALS for several weeks now. That's not healthy. I've done something similar myself. One time recently I convinced myself I was dying shortly of cancer. I broke into tears. But the oncologist looked at me just one time real quick and pretty much laughed me out of the office. He was polite, and professional. But I could sense it. I was certain I had found cancer, and he was certain there was no such thing on me. He was right, of course: my "cancer" cleared up within a month.

Now you're in a hard spot. You need to leave ALS behind, but you've let that worry take over. You really need a professional who can understand both the body and mind, and manage meds at the same time. I recommend shopping around for a full-fledged psychiatrist, not a psychologist.

Now I'm also in a tough spot. I want to help and would love to chat, but my time is limited and we must spend our time on people with ALS.

 

[affected]

Gosh a mother of 7 and going through all of this! I'm so sorry.

The great news I can give you however is that these are not anything like how ALS begins, not even a little bit.

I truly hope they can work out what is going on soon, you must be highly stressed.

 

[Grace89]

Atshack,
I am so sorry you are having to deal with all of this. Being a mother of 7 should be enough stress for you! If you are close and can get an appointment at John Hopkins I would definitely do that. In all of my research it is one of the best.

I have more confusion than answers at the moment unfortunately. I went for a 3rd opinion that has completely changed the course for my diagnosis.
Hoping you get answers soon and no ALS!

 

[KimT]

Nope.....not ALS. I wish you all the best getting treatment.