Update on condition

[Jric80]

Hi everyone. I wanted to provide an update on my symptoms, and my apologies for starting a new thread, as my prior thread has been closed.

It’s now almost been a year since my symptoms started with the following issues:
1. Upper lip twitching
2. Pain down my entire left leg, calf and foot
3. Muscle twitching in various spots, with constant twitching in calves at rest.
4. Dizziness
5. Pain in right ear, right side of tongue and throat.

I’ve seen multiple doctors, including two neurologists and a neuromuscular specialist. I had a full EMG in NCV test in mid June. The only issue found was on the NCV which showed a small decrease in nerve signal velocity in most areas. The EMG was normal.

I’ve tried to proceed with the Gabapentin prescribed to deal with the nerve pain in my ear, tongue and leg. But it has not helped. I’m still dizzy quite often, and The twitching continues throughout, primarily in calves. My nose at times as well. And I’ve read enough on this site to know this does not mean anything without weakness.

However, the pain in my ear and tongue does impact my speech, and makes me concerned as you can imagine, about possible serious issues like ALS. Also, many people have asked recently that a normal EMG doesn’t necessarily rule out possibilities of diagnosis, as others have posted their tests were normal, until they weren’t. I know that issue scares many of us who aren’t sure what is going on, and provided with little to no guidance as to the cause of what we’re dealing with. This forum, with all of its great people, becomes a critical resource for help.

If anyone can help with thoughts or insight, I would greatly appreciate it! Thank you!

 

[Nikki J]

The reason people with ALS have speech issues is not pain. You have twitching ( non specific) and sensory issues, a normal emg and multiple neuro opinions including neuromuscular that say not MND. As I just replied elsewhere the usual reason for the normal emg first is upper motor onset which would have been detected by the doctors

You have a normal emg, exams apparently not indicating concern for umn disease and symptoms that don’t sound like ALS

I am sorry you don’t have an explanation but since you give us no reason to think you have an MND this is not the place to find answers

 

[Calvin2017]

I was diagnosed with ALS one year ago. I have every symptom you listed.

 

[Jric80]

Calvin2017 - you're saying that you had every symptom I referenced above, including all of the sensory symptoms I have in my ear and leg?? Can you please let me know more about what happened to you, including how you came to be diagnosed? Did you have weakness anywhere else with pain?

I'm sorry to ask questions, but hearing this makes me very nervous.

 

[Nikki J]

You have had a normal EMG and 3 neurologists ( one neuromuscular) have examined you and found no evidence of ALS. If Calvin also had a normal exam and emg and was cleared by multiple neurologists I will be surprised and would wonder how a diagnosis was made without either emg or exam findings.
Hopefully he will come back and explain more fully and you will see differences in your situation

 

[Jric80]

Thanks Nikki. I know that every situation is different, and there could be significant differences in Calvin's diagnosis vs my symptoms. But, I know there are many people including myself who have expressed fear about their symptoms when there's been sensory issues involved.

 

[Jric80]

Again I apologize for continuing to ask questions, and focus on what I've been told isn't there. I know there is something not right, and the tough thing is, not one doctor has provided a reason for what's going on. This forces me to continue down the self-diagnosis road, which is a horrible thing. And I know things like pain/sensory/no weakness all point away from this. But the occasional post that includes those things is scary...

It's been an awful year for us, with 3 little ones at home. My wife is battling cancer, and I just can't seem to get better to be 100% there for her. Again, I'm sorry for all the posts and questions.

 

[Nikki J]

i am very sorry to hear about your wife. Wishing her the best

Being undiagnosed is not that uncommon in neurology. If you have been told this is neurologic then you need to build a trusting relationship with a neuro who will work with you and communicate what is on the table and what isn’t.

If all 3 neuros said not neurologic then your pcp is the right place to start looking for answers.

Even doctors shouldn’t try to diagnose themselves and frequenting forums for diseases that your doctors have not found is obviously not helping. I think this thread shows this.

I really wish you the best but nothing any of us can say will influence your doctors’ plans and diagnosis

 

[Jric80]

Thank you for the kind words Nikki. It's been a difficult year, and my wife is an amazing person.

I understand your thoughts, and will continue to work with my docs. I've been told this is neurological due to the nerve pain and discomfort this has caused. Extensive blood tests were done, and the only things found that were somewhat abnormal was reactivated EBV and Chronic Shingles. I haven't been advised they think either of those issues are the cause of my current symptoms.

The diagnosis from my neuro is polyneuropathy - with no specific cause. And I have greatly appreciated the experienced people on this forum letting me know all of the symptoms don't add up, and I don't need to be on this forum.

It's just concerning when I see someone advising they had similar symptoms. Wouldn't I be faced with noticeable weakness after 10 months of symptoms?

 

[Bestfriends14]

Hi there,

I'm so sorry about your wife. Yes , after 10 months there would definitely be an inability to do things such as, button your shirt, heel to toe step, open water bottles etc.

I'm also sorry that the above poster said what they did I've never seen the poster on this forum nor have seen them post since making a comment on your thread. We have, unfortunately, from time to time some individuals that like to troll the website to see the reaction they get. It's sick, but true. This may be one of those times since there was no elaboration to their claim of having every symptom you have. I'm sorry you were made to feel uneasy by their callous, flippant and reckless remark.

Please believe your Neuro when they say that there is no ALS.

Take good care and I do hope your wife is on the mend very soon. Hugs to you.

 

[Calvin2017]

Jric80. If you’re referring to me the newby on here I guess I owe an apology. I was quick to jump in however I did have the same symptoms and I guess I shouldn’t have said that. I am not trolling and the last thing I want to do is hurt someone. I have bulbar onset ALS. I was diagnosed a year ago by a neuro/muscular specialist at the University of Penn in philly. I can not speak and my disease is progressing. I am in pain and I’m ver scared

 

[lgelb]

Calvin, feel free to start a new thread to introduce yourself.

Best,,
Laurie

 

[Nikki J]

Yes calvin we would like to get to know you and help however we can. Can you clarify a bit though on this thread. If you were diagnosed you must have had abnormalities that were apparent to your doctors on their exams?

 

[Jric80]

Thanks Calvin. I appreciate your response. As mentioned above, I’m hoping g to understand more about how you came to be diagnosed. Did you have weakness is specific areas? Abnormal EMG? You mention you were/ are in pain. Can you elaborate at all on how that progressed? Thank you for any additional information you can provide.

 

[Calvin2017]

I started out with my speech slurring. I was diagnosed one year ago by a specialist at University of Pennsylvania. I did have an EMG after seeing three neurologist. Now I have problems swallowing and using a breathing machine at night. My name is Claire and I wouldn’t make this stuff up. I didn’t get on this site to troll and harress people