In limbo....body wide and bulbar

[Baseballmom]

Let me start by saying that I have read the sticky...and the information is terrific. Believe me, I've read it at least 25 times.

I am experiencing some type of illness that has me very much on edge. I have yet to receive a diagnosis. I would love to have your valuable, first hand opinion. And I will take it at that. I am a 42 year old female.

I had a sinus infection and other flu type virus mid July. With this brought about tinnitus in one ear and the onset of what I am experiencing today. (had 2 antibiotic/steroid shots and 2 rounds of antibiotics)

Muscle twitching started in one hand, then moved to left thigh. Upon the advice of my doctor, I started taking Magnesium. Twitching seemed better for a couple of weeks. Then BOOM, body wide twitching commenced. Then, BOOM, I googled twitching and up popped ALS. You know the rest of the story.

I am currently seeing a neuromuscular neurologist that has ran a million blood tests - all normal/negative. He conducted an EMG of my lower legs - all normal. I did see another neurologist while waiting between testing. He ran a nerve conduction on my legs and an EMG of my left arm - where I was having the problem that day. This test was about 4 weeks after the normal lower leg EMG. Regular neuro #2 said my F-wave was a tad high...not much out of normal range. EMG on left arm was normal - or BORING as he called it.

I am currently awaiting a lumbar spine MRI from the neuromuscular neuro. The weeks of wait time is agonizing...as I know every single one of you can attest to. His first reaction off the cuff was something post viral..but he is being extremely thorough.

My twitching is body wide, but specific problems have been primarily one sided - left (non dominant side). These symptoms are mild cramping, stiffness (fingers), rubber feeling leg, wide spread muscle pain all over body, periodic nausea, muscle fatigue and overall fatigue. I do admit that some days are better than others. I have experience leg "jerks" on occasion. My upper shoulder and neck muscles are extremely tight and have been the entire time.

I have done the battery of self tests and am strong. Neuro found no actual weakness on clinical exam. I had my thyroid removed 3 years ago. My levels are in range, but lower than what I typically run. I've wondered if this is adding to my problems - if this is immune system related.

What concerns me, is now I am experiencing a lump in my throat, hoarseness, tight throat, tongue twitching and lip/chin twitching and tremor. My tongue feels extremely fat and clumsy. I can swallow and my husband says I am not slurring words. I, however, sometimes feel like I am stumbling on my words. However, I constantly feel like something is hung in my throat and I clear my throat what feels like a million times a day. Extremely dry throat and mouth. Scalloped edges of tongue. I could absolutely just be hyper sensitive to this problem area right now. I am having a hard time being objective and reasonable. My tongue is reasonably still when in the mouth...but it does look like a bowl of jello when I protrude it from my mouth. This has me very concerned. I am now starting to wonder and doubt myself - if this is actually where my symptoms started.

When I see him again, I would like to request an upper/bulbar EMG.

I'm not real confident in my GP. He has reviewed all the tests to date and keeps saying Fibromyalgia. I've always thought this was a waste-basket diagnosis for when they have no idea what is going on.

I would love your input on things to be aware of, concerned about....or just to relax and let my neuro do his job.

I sincerely thank you for taking the time to read my long post.

 

[Vincent]

At no point in my diagnostic process was I ever told everything looks clean, especially EMG. An EMG will show problems with motor neurons long before weakness sets in. Lucky you. Stop worrying about fatal diseases.
Vincent

 

[Baseballmom]

Thank you for your reply Vincent. I very much value your time and input.

 

[Baseballmom]

Two other notes - my uvula seems to be hanging low, but symmetrical. My gag reflex is super sensitive. Off and on burning/scalded tongue feeling.

 

[timg]

Sorry to hear that you don't have a diagnosis. I have been diagnosed with Bulbar ALS. Mine started in Dec 2015, I was slurring my speech but did not realize it. I have been checked for Stroke, MG, i have had a Pet scan, 3 MRI's and 3 EMG's, each test showed clean. My symptoms as I stated stared with slurred speech, then came the difficulty swallowing, i can drink thick liquides fine, but if i take a normal drink of water i will chock, most recently have have had episodes of chocking in bed on saliva. I also have muscle atrophy in my cheeks I continually bit them. My wife is in denial so I am going to see another neuro ALS specialist.

 

[lgelb]

Not at all unusual to have delayed reactions to repeated rounds of abx/residual infection/2nd infection and the best things for all that are sleep, stretchy exercise, nutrition and calm. It sounds you are in good hands in terms of testing. FM is a dx of exclusion and should be made by a rheumatologist. That might be your next stop assuming the future EMG is negative, as I imagine it will be.

Best,
Laurie

 

[Baseballmom]

Thank you, timg and Laurie. I appreciate your time and responses. Timg, thank you for sharing your initial symptoms with me.

 

[Baseballmom]

Any further comments or observations would be welcomed.

If not, I will follow thru with my doctors and only return to this site if warranted by an ALS diagnosis.

Again, THANK YOU for your time.

 

[affected]

Follow through with your doctors, the members here are dealing with a terminal illness for real, many can only use their eyes to operate their computer.

You had 3 people answer you already.

 

[Baseballmom]

Sorry if I seem needy or if I offended...especially to you Tillie. I have valued reading your responses on previous posts.

Please just know that my post came from a dark place of fear. If I feel the need to return to this site, I promise to limit myself to the 'sticky'.

Thank you, repeatedly, for taking the time to read and answer.

 

[Atsugi]

i'm responding to the OP's personal invitation.

Baseballmom, after reading your post with your symptoms, I don't understand why you ended up here. Also, after you read the sticky, I'm surprised you still wonder if you have ALS. I think it's pretty obvious that you shouldn't be focusing on ALS. I don't see it in you at all.

If your tongue or mouth is on fire, look up "Burning Tongue." If you are getting a jumpy leg, look up Restless Leg Syndrome. Also, see your PCP.

Here's a clue that got my attention, when you wrote : "[GP] has reviewed all the tests to date and keeps saying Fibromyalgia. I've always thought this was a waste-basket diagnosis..."

You might have the most brilliant GP in the world, but if you don't have confidence in them, you might want to ask to be referred to someone else.

I think Tillie, Greg, et al, have given the best advice.

 

[Baseballmom]

Received official report on lower bilateral legs: 1. Moderate sensory demyelinating polyneuropathy. 2. Normal EMG of the lower limbs.

Neuro performed upper NCV/EMG which included needle sticks for multiple back muscles and neck muscles. Preliminarily he said the muscles looked good - no fibs, sharps, fasics. He said he would need to study the NCV .. So I'm guessing similar upper sensory issues.

Lumbar and brain MRI's were completely normal.

I'll report back if there is anything different. I would like to say that I was completely unaware of the amount of anxiety I was crippled with. I am taking Klonopin now and it has made all the difference in the world - including reducing symptoms and making some completely go away. THANK YOU for the anxiety slap in the face.

Not sure what diagnosis I'm headed toward...maybe even not one. I just have to reconcile my mind with being ok with that. My neuro did suggest a referral to UTSW with a neuromuscular/neuropathy specialist. He said it was just to check it off my list....not that he felt it was warranted, just to ensure for myself that he didn't miss anything. Guess my anxiety was overwhelmingly transparent !

All the best.....

 

[Baseballmom]

Back to report the Upper NCV/EMG results: 1. Mild carpal tunnel in right hand 2. Unremarkable EMG of arms, back and neck muscles.

My 2nd neuro looked at the NCV/EMG reports and disagreed with the lower leg NCV findings (moderate sensory demyelinating polyneuropathy). She felt that the results pointed toward Axonal Sensorimotor Polyneuropathy.

Since the EMG needle sticks were clean/normal....am I correct in assuming that the NCV results still point away from ALS?

I think my neuro's referral to UTSW for an evaluation has just sent me down the "dark rabbit hole" again. Sorry to intrude and ask another question....I just value your opinion and recommendations tremendously.

And I know....keep the anxiety under control. It's just been a tough diagnosis battle with crossover symptoms.

 

[affected]

That's all great news! Congratulations - no sign of ALS, not even a tiny little bit

Now they just have to figure exactly what kind of neuropathy you have, but notice the sensory involvement in both diagnoses so far - whatever the final diagnosis ends up at, it is not ALS.

Let us know after your next evaluation.

 

[lgelb]

Mom,
These results definitely point away from motor neuron disease. There are neuropathies that encompass both sensory and motor neurons, and these are not anything like ALS. UTSW sounds like a good next step. You might want to read the 2nd opinion sticky and plan your questions.