Hoping for the best

[Nivs76]

I’m a 41 ur old male. In February of this year, I started to notice fatigue in both arms and legs. I was holding a puppy for a minute when I realized that my arm was extremely fatigued. My knees if not locked will shiver/shake and buckle. I have sever tension/soreness in calf’s and behind knees. On April 28th , I was going about my day when my whole core felt as if I had done 1000 sit ups. (Same feeling with the rest of muscles) The feelings I’ve mentioned above have not gone away and are still with me daily. Last Sunday 5/20/18 I woke up with my jaw muscles very tense and sore. My tongue and under my chin are very tense with a heavy like feeling. My voice is constantly cracking and I’m having to clear my throat constantly and struggling to swallow. My voice is somewhat sluggish and find myself having a difficulty time pronouncing when I’m talking. (Co worker referred to it as sounding tongue tied) Possible Bulbars onset is what comes to mind. Doctor referred me to a neurologist for further studies. Keeping fingers crossed. Any feedback is appreciated, thank you and god bless!

 

[Vincent]

THe sticky at the top of the Do I have ALS forum answers all your questions. What you are describing is a whole bunch feelings. ALSbeing a disease of the motor neurons, it doesn't feel. I have muscles that no longer work but I feel fine. Do you have anything you are unable to do any more? ALS is about FAILING NOT FEELING. Good luck with the neurologist, I just don't see ALS in anything you describe.
Vincent

 

[lgelb]

Hi Nivs, sorry you have had what sounds like a scary few months, but something more acute like a virus or infection seems more likely than what we deal with here. Did you have bloodwork done at the PCP visit?

Best,
Laurie

 

[Nivs76]

Vincent and Laurie,

Thank you so much for taking time to reply! (Laurie, I’ve read some of your responses and I’m thankful that you responded to mine)
I’ve had CBC work , thyroid and checked for autoimmune and negative on all. My CK was only high by 3 points. I’m seeing a neurologist tomorrow at 2 and hopefully getting my some answers.
Vincent and Laurie, thank you again!
God bless

 

[Nivs76]

Update..
Laurie, I just returned from the neurologists office. He did some strength and reflex tests. He said the reflex test on my knees showed just a little bit of excessive reaction. Nothing of concern since it was equal on both limbs he stated. However, he was concerned with my diffulty in swallowing and my aspiration of food and water. He seemed very perplexed and quite sad when he said he would treat it as ALS. He’s ordered a MRI and EMG. He did mention that it was probably too early for an EMG to show any damage to nerves being that my symptoms just started in April. I’m hoping he’s wrong and this is just anxiety manifesting itself.

 

[KimT]

Your doctor is incorrect. Abnormal EMGs can be expected even before weakness occurs and certainly after weakness sets in if it's ALS. If your EMG turns up anything that he cannot interpret, I'd find myself another neuro.

Is he doing the EMG on the muscles of your neck and did he think to order a swallowing test?

 

[lgelb]

I'll trump Kim -- I wouldn't do an EMG with this neuro, as I would not trust it.

Looking at where you are, here's an option in Santa Barbara.

 

[Nivs76]

Kim and Laurie..
Again, I really appreciate you taking time to respond. Your replies are so comforting, I hope you realize how much it’s helped me these last couple of hours. Laurie, I have an appointment set to see a neurologist at the Sansum Clinic in July. You’re the third person who’s mentioned them by the way. It’s just hard to get in there.

Kim, he did not order a swallow test. Would that be a ENT doctor? I’ll call tomorrow and ask them to make a referral. He will be conducting a muscle and nerve test in lower limbs, lower back, neck and upper limbs.

Marv

 

[lgelb]

July is next month, really, considering it's a couple of hours till June.

I would not put myself through two EMGs just to get sub-par results in June.

I would also let docs at Sansom order swallowing and other tests if/as indicated.

 

[Nikki J]

I agree with Laurie to seek the second opinion and get an EMG there if so advised. Aside from other issues we have had members find that insurance would not pay for a second EMG so soon