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bluedog

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I saw an ALS neuro at Cedars Sinai last week. He said the exam was completely normal, with no UMN or LMN signs (I have brisk knees and atrophy... but he said normal). He said that even though I had two normal EMGs followed by three abnormal ones (large motor units), he is 99% sure I don't have ALS. He didn't do an EMG.

So that is at least 6 top ALS neuros over the last 9 months saying they are 99% or 100% sure that I don't have ALS. But my symptoms persist, and some are getting worse.

My complete list now is:

-Problems swallowing some solids (need to wash down with water).
-Weak, nasal voice.
-Right facial wasting.
-Wasted left triceps (painful where wasted).
-Bodywide twitching.
-Stiff hands.
-Burning muscles (lactic acid burn feeling) with any acitvity, even crossing my legs.
-Drop things with either hand.
-Arms and legs feel weak and heavy.
-Tremor everywhere.
-Continual pre-cramp soreness in hands and feet, with some actual cramping.
-Insomnia (wake every hour) but no C02 headaches.
-Poor balance
-Anxiety
-Increased sweating.
-Shortness of breath.

The swallowing issue started about 18 months ago, and everything else about 9 months ago.

There is a huge disconnect between my symptoms/EMG results and what the neuros are saying. I still don't see how they can be right. I hope they are, of course, but it still makes no sense to me. I still think that I'm 1 fib or psw on EMG away from ALS.

Does this disconnect make sense to anyone? Could the neuros be right?
 
After 6 neuros you should believe. Do you have something wrong? Possible. You can cross als off your list, but the list could be long. Some MD diseases fit what you are describing. Maybe look into that.
 
ENTERTAINMENT, Oh yes, YOU know who YOU are!
 
I don't know what you have but the pain you're experiencing I don't have.

Wasted left triceps (painful where wasted).
Burning muscles (lactic acid burn feeling) with any activity, even crossing my legs.

Maybe a neurologist isn't the right doc? The ones I have seen are very narrow and are just experts in their field. They rely on my primary for anything else.

Its good news that you do not have ALS. Accept that at least for now. Its really hard not having a diagnosis can't really fix the problem. See if you can do something about that lack of sleep. That can affect a lot of body systems. Good Luck to you.
 
Thanks for the replies Vickim and R9. I am in a really bad place right now and can use any glimmer of hope.
 
Of course they're right. It's not ALS. What did they say they thought the problem is?
 
Ms. Pie, when my EMGs were still normal, they said it was anxiety. Now, they are not saying what the problem could be.

Seems like it is ALS or nothing. Some said radiculopathy. But they always say that when you have large motor units without spontaneous activity, even with no evidence of radiculopathy whatsoever. The Cedars neuro even said that radiculopathy wasn't the case because the large mups are in many muscles. Would have to have radiculopathies at multiple levels, and on both sides for that to occur. He kind of laughed off that hypothesis.

He thinks that if I get on some anxiety meds and SSRI, I might start to feel better. He seems to think people can have large MUPs and it not be a worry.
 
sounds like anxiety to me, and many of your symptoms just don't indicate ALS

anxiety can do many things to a body, I agree you should maybe be looking to different medical specialities, the Neurologists are not going to finally say ALS if you simply go to enough of them
 
Bluedog I am sorry for your suffering. I agree to trust the neuros. Stop obsessing about ALS and those MUPs. Did all those neuros see the signs you report? If they did how did they explain them? Your question to the doctors needs to be what is wrong with me not do I have ALS. As my attorney friends say "asked and answered". If they say not neurological ask for direction for specialist. If there are true signs( as opposed to symptoms) there is an answer beyond anxiety. If no one sees the signs besides you then maybe you need to accept the anxiety diagnosis and really address it.
Good luck
Nikki
 
Bluedog, Have you ever been checked for Chiari Malformation Syndrome?
 
Nikki, thank you for your kind words as always. The neuros see the facial wasting, and three of them said to follow-up with my ENT or a dermatologist. They don't consider it ALS wasting for some reason. When I followed up with the ENT and asked him about it, he looked at me like "are you kidding me, your neurologist said to see an ENT for muscle wasting?" And he didn't even look at it. So that didn't go anywhere.

The same with the triceps wasting. The neuro tested my triceps strength by having me push against his hand. And he said you're strong and didn't look at the wasting. They see the twitching and then say they twitch too or don't think it is an issue. So they see the signs and don't appear to be alarmed in any way or have any answers.

I am going to address the anxiety by meeting with a psychiatrist this week for a follow meeting about meds. First met with him about a month ago.

Clearwater Al, my brain MRI didn't show a Chiari Malformation. The only abnormality was a partially empty sella, of all things. 98% of people with that are obese women, so I don't know why I have it. It can mess up your hormones though, and I had some bloodwork taken last week to check hormone levels and other things that could be affected by the empty sella. I get the results tomorrow.
 
Did any of them mention BFS? Sounds like it could be possible except for the wasting of course. I think muscle wasting and actual atrophy seen in ALS could be different though. Not sure what yours looks like but atrophy is pretty clear in the stories I have read about ALS. I have a lot of the symptoms you have and my EMG was clear as well as clinical exam. My diagnosis from the neuro was post viral CFS/ME and by my gp it was fibromyalgia. I do not have any wasting though. So it could be something other than ALS. Especially if 6 neuros are telling you that and you have lost no function after 18 months of symptoms. I think it is good to address your anxiety and see if it helps improve your symptoms some. If it does great, if not you can always try again with your doctors..
 
Bluedog,
I know that I have been very irritated with you in the past, but this post is so pathetic I just had to write. I feel very sorry for you, you have been given a pass by 6 specialists and still YOU are SURE you have ALS. I am glad you are going to see a psychiatrist, print out this post and let them read it. You are just not acting normal--you are obsessed with ALS and can not see the truth.

I know that you think the truth is that everything points to ALS, but 6 neuros say no, and everyone on this site agree based on what you have told us. that list of symptoms? It is not a big ALS red flag to anyone but you. In fact, that list is a big red flag for NOT ALS. I had almost every one of those symptoms when my husband was first diagnosed--they were from stress, fear, grief, worry and anxiety. Since I am not a hypochondriac, I saw it for what it was and not something more insidious.

I really think you need to take control of your life and health. stop going to the doctors (especially Neuros) and stop going on line about health related issues and your growing list of "symptoms". stop coming on this website and any other health forums you are involved in. Take a break--for at least a year. see your psychiatrist regularly and take the anxiety meds that they prescribe. Start practicing yoga and meditation. take up a new hobby that gets you out of the house--maybe join a club or a church. make a regular habit of volunteering your time to helping others like at a food bank or an animal shelter. make some friends and live.

I am saying this because you need to change your life before you piss it all away worrying about a disease you don't have.

the Pals that I know are living their lives to the fullest that they can everyday and appreciating what they do have. they are not pathetic, they are strong. they do not obsess about their symptoms, they think about what they can do to get around the issues and live as normal as possible. They don't even go to the docs as often as you.

We don't want you here, because you don't belong here. That is a GOOD thing. the title of this forum is "Do I Have ALS?" and the answer to that question for you is NO. you are the only person who can't see that.
 
bluedog my emgs were same as yours and muscle biopsy revealed mitochondrial disease . I was having difficulty walking
have you asked about mito
 
Barbie, thank you for taking the time to respond. If I could start feeling better instead of worse every day and didn't have those damn large MUPs, I think I could start to move on. Maybe the anxiety/depression meds will help.

oscar, no doc has mentioned mito or any other disease. I saw in one of your posts that you can walk for 15 minutes. Is that improving at all? Are you taking a mito cocktail or anything that is helping you? Hope you are doing well.
 
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