Battling something not sure if it's ALS

[LovetheLord]

Hi everyone,

God bless you all. I wanted to ask some questions. I have been dealing with medical issues since Feb. of 14. It started with weakness, I was admitted into the hospital April of 14. I had MRI, Spinal Tap, Lyme Test, MS test, Muscle tests, ANA's. They haven't found anything. I have been to Neuromuscular specialists, and he said my EMG/Nerve conduction study was normal. That was June of 15. I have been having EMG's and NC studies all along the way. 6 total, all saying normal. I have been tested for rare muscle diseases, to MG, and back. My symptoms have gotten really bad over the past month. My left ankle got weak, then it went into my knee, my thighs, up to my stomach, into my arms, and my neck. I fell very weak, but I am not showing clinical weakness. I am having issues feeling like my food just goes down my throat, and I feel a little water come out of my mouth on the right side when I drink. I am able to walk and move, but it feels like I get very fatigued if I type or walk, or stand up to much. I have many muscle fasilations, and I almost feel like my body is floating if that makes sense. I did have a lot of pain when these new symptoms started a month ago, but that seems to have gone. I've been scared for the last 1 1/2 years this is ALS, but no doctor can give me a diagnose for some reason. Do you guys have any advise or thoughts?

 

[affected]

You need to read the sticky at the top of the Do I have ALS section.
I'm happy to tell you that ALS is just not on your list of possibilities at all!

Maybe join a faith forum somewhere to help take your mind off this as you are talking yourself into believing something that simply isn't so.

 

[LovetheLord]

Thanks for the reply affected. I did read it, and I am honestly not here to cause any trouble, or make anyone dealing with this awful disease feel bad. It does seem my symptoms are ALS. When I try to do anything with my hands they seem like it's hard to coordinate them. When I wake up and stretch I no longer feel any muscles waking up. I am having some issues with getting air in, and that has been verified by my pulmonary doctor. When I type for a bit, my arms feel very fatigued. Has this happened to others? Or maybe someone reading this may know of a direction I can have my doctors look in? I can't play tennis anymore, run, or do the things I loved. There is something going on, and my Neurologist has said he can't 100% rule out ALS.

 

[LovetheLord]

I would really appreciate any thoughts. Thank you. Tracey

 

[Nikki J]

None of what you describe sounds like my experience and with normal EMGs and no clinical weakness it does not seem like ALS is high on the list. If you have not yet been to a neuromuscular specialist at a major medical center like Emory you should

 

[LovetheLord]

Thanks Nikki. I appreciate the advise.

 

[LovetheLord]

LovetheLord
Today 12:08 PM - permalinkLovetheLord
Hi maybe you guys can help me. I have had muscle weakness since 2/14, I have seen doctors and had tests for everything. My EMGs have come back normal, but I haven't gad one since these symptoms have really hit me hard. I had Botox done July15 and ever since then I have had muscle fascinations all over my body. It's extremely hard to breath, when I swallow the food and drink just goes down, almost chocking on it. There is extreme muscle weakness in my chest upper back, left upper arm, neck, stomach, and in my upper legs. It progressed so fast, and I am waiting to see a specialist in Emory. I have been taking Ativan and Small amounts of pain meds to help me. But my breathing is getting worse. Do you guys think the Botox 40 units could have set off ALS? I have also noticed my sinuses are very stuffy when I wake up, and then my sinuses get so dry during the day. I can't do much, and when I try to walk I am extremely weak and off balance. Is this ALS?
Report

 

[LovetheLord]

Something is progressing fast. Maybe someone can help me with answers?

 

[Nikki J]

Since botox is used to treat a couple of problems in people with MND I do not think it triggered ALS and your symptoms started before July anyway. Again multiple negative EMGs and no clinical weakness do not sound like ALS. Either go back to your neuromuscular specialist or go to one at somewhere like Emory

 

[LovetheLord]

I do have clinical weakness now. I am waiting to get into Emory. Just hoping it's not to late with my breathing it's so difficult to get a breathes in and out. I went to the ER and they said nothing they can do for me. I just want to know what has gotten me to this point. Doctors have not helped me at all.

 

[Atsugi]

Love, thanks for writing such a detailed account. Glad to see you're getting into Emory.

ER doc's are trained and equipped only to stabilize the patient's life so they are alive long enough to be discharged or sent to another doctor. Go to them when your breathing is seriously compromised, but don't expect them to diagnose you.

A diagnosis of ALS is unique; it is a death sentence and there are many expensive medical and cash benefits given to patients to make their lives less tortured as they decline. It is one of the hardest diseases to diagnose; there is no test for it. Doctors from several specialties must rule out many other diseases before a neurologist who specializes in MNDs can put his license on the line and diagnose you with ALS. Even then, you should still get a second opinion from another neurologist who specializes in MNDs.

You mentioned a whole lot of symptoms that have nothing to do with ALS. Tillie and Nikki are VERY well qualified in ALS, more than most doctors, seriously. I'm not a doctor so I can't diagnose what you have, but I know ALS fairly well.

You said two things that mattered (all the rest have nothing to do with ALS). First, you said you now have clinical weakness. We call it clinical because it has to be determined by a doctor. Any GP can do a simple but surprisingly thorough exam for clinical weakness.

The weakness of ALS is not like any weakness you've ever felt. In fact, you don't feel it at all. There's no feeling of weakness in ALS. This is how it works:

ALS is all about motor nerves in the brain and brain stem. They get destroyed, one by one in serial order. The sensory nerves are not involved, so you don't feel anything; you don't feel any sensation of weakness. Just a motor nerve in the brain is destroyed, so it cannot send a signal to its corresponding muscle to contract. So the muscle cannot contract. It stays limp, useless, paralyzed. It never recovers; it never improves.

Here, I'm tempted to ask which muscle is paralyzed, but the second thing you said that matters makes that question moot (at least in regards to ALS).

You said you had several clear EMGs that found no ALS. An EMG is a very comprehensive look at the electrical activity between your brain and your muscles. In MNDs like ALS, this activity is terribly, obviously abnormal, MONTHS before the patient can see any symptoms. If you have ALS, the EMG knows it. If the EMG is clear, you don't have ALS. Believe the EMG. Be relieved that, whatever you have, it isn't ALS.

Sorry we can't diagnose you over the Internet. Some very smart and well informed people have told you that you don't have ALS. Don't waste your time (or ours) chasing ALS. Go to other websites if you feel Dr Google is more qualified than your neurologist. The best use of your time is to seek comfort, probably from your clergy, while you're waiting to see the experts at Emory.

 

[LovetheLord]

Whatever is happening is happening in my chest neck throat and breathing. Thanks for your reply.