Old 04-12-2018, 02:08 AM #1 (permalink)
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Default Vast symptoms... worried about Bulbar onset.

I was recently told by my internist that I most likely have Myasthenia Gravis, ALS, or something similar. She is not thrilled with my care thus far by my current neurologist and spoke with the chief of Neurology at the University of Utah, who specializes in ALS, MG, EMG, etc. He has agreed to see me but I cant get in until the 19th. The worry of ALS is consuming me. I have been suffering for 8 months so far and my symptoms have evolved quite a bit into what now appears to be mainly neurological. I'm hoping you all can shed some light.

I'm 47 with 4 children... My youngest is almost 3. I can't leave her so early as her siblings are boys and much older (21, 19, and 17).

My symptoms are vast and started in August. By November I was diagnosed with glossopharyngeal neuralgia with my neurological exam appearing normal at that time. Around that same time I began having upper right quadrant pain as well as pain in my chest that radiates into back. Slightly before my GPN diagnosis I was feeling like food was getting stuck while eating. A swallow study revealed that I have esophageal dysmotility.

For the glossopharyngeal neuralgia I was put on oxcarbazepine, which is a drug used for epilepsy. It reduced my pain substantially but caused horrible Tremors and a lot of cognitive issues. I was weaned off of it one month later. My Glassopharyngeal neuralgia pain was not bad enough to be put on Neurontin, like originally planned, once I was off the Oxcarbazepine. After coming off of the oxcarbazepine I still had a horrible Tremors. And then it was found that I had hyper reflexes with some clonus in my left ankle. My tongue was shaky and I had a lot of facial twitches. At this time I assumed these were all lingering side effects from the Oxcarbazepine used to treat my Glossopharyngeal neuralgia and was not worried. I was just thrilled to be rid of the horrendous GPN pain (it is still present but to a much lesser degree... totally tolerable).

fast forward a few months... now not only do I have hyper reflexes with 3 beats clonus in left foot, and tremors, I have a weak tongue by the end of the day and my voice goes hoarse on and off. I also have random twitching. While resting or trying to fall asleep at night I'll feel my legs and feet twitch non stop. Also if I'm super tired or extremely stressed I'll get some facial twitches, particularly around my mouth and my eyebrows.

I've recently noticed my hands and feet being sore with some weakness in my arms and legs. They get shaky fairly fast. Just squatting down to play with my toddler makes my legs shake as if I had been doing tons of squats.

I do not have a droopy eyelid and so far the blood work done for Myasthenia Gravis has back normal with Titin antibodies barely elevated into the intermediate range. This makes me fear ALS even more so.

My brain and cervical spine MRIs done in November were normal. I'm waiting on insurance approval for a repeat brain MRI in addition to a thoracic spine MRI. These were ordered by my existing neurologist, the one who diagnosed me with GPN. She has not ordered an EMG, nerve conduction testing, or spinal tap. She seems to be taking her time, which is why my PCP referred to another neurologist.

My fears is bulbar onset ALS... My voice goes hoarse quite quickly, my tongue is very weak (its difficult to control it when trying to clear food out of my teeth, especially towards evening, my speech seems unaffected when comparing it to the description in the opening post. I have difficulty swallowing and feel it is worse now than it was when I had my swallow study done in December (that test revealed esophogeal dysmotility). My tongue hurts on occasion, like it has been scalded and I have pain under my tongue, kind of in the submandibular salivary glands areas. I get quite phlegmy after I eat.

I Also get winded quite fast and have a lot of pain across my back at the height of my shoulder blades. I wear out extremely fast. If I go to the grocery store, I'm shot for the rest of the day... hoarse voice, weak tongue, shaky, twitches, and pure exhaustion. I just want to lay down and cry.

One last thing I should mention is, I wake in the morning VERY weak and shaky. Once up the shakiness subsides some. If I nap I experience the same shakiness upon waking.

Does anyone with bulbar onset recognize any of these symptoms. I know I have a ton of symptoms... so many that my neurologist referred to me as 'Pandora' s Box'

Thank you for reading such a long post. I'm hopful that I didn't leave many of my symptoms out.
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Old 04-12-2018, 11:12 AM #2 (permalink)
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Default Re: Vast symptoms... worried about Bulbar onset.

MG is an autoimmune disease. Did they try a round of steroids to see if there was any difference in your symptoms or an injection Tensilon?

There's a possibility that you have more than one thing going on but I'm sure your neuromuscular neurologist can systematically sort it out.

I'm glad your pain subsided but Neurontin is a pretty safe drug, if it becomes necessary.

I'm glad you got in this month. There are so many possible diagnoses at this point, the only person who will be able to sort it out is your neuro specialist.

Hoping they find something fast and that it's curable.
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Old 04-12-2018, 12:15 PM #3 (permalink)
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Default Re: Vast symptoms... worried about Bulbar onset.

I've not been given any meds to see if they help. If I understand correctly,they might help if MG but not if ALS???

My voice and tongue weakness vary depending on how tired I am. Can that happen with ALS ? Or once the voice goes hoarse, does it stay that way? And would my tongue function better after a good night's sleep if it were ALS? The 2 diagnosis seem to have a lot of overlap in symptoms.
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Old 04-12-2018, 08:43 PM #4 (permalink)
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Default Re: Vast symptoms... worried about Bulbar onset.

I was diagnosed with progressive pulsar palsy in late January. Many of your symptoms were not in my body, but for several months before the diagnosis, I found that mornings and early afternoons, my speech was better. When I tired, my voice was so slurred, I was difficult to understand. The earliest symptom was hoarseness that came and went a full year before diagnosis. Hope an autoimmune disease is a result of Your upcoming ng appointmen
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Old 04-12-2018, 10:01 PM #5 (permalink)
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Default Re: Vast symptoms... worried about Bulbar onset.

Thinking of you and here’s hoping for an autoimmune issue, odd as that sounds. If it’s any comfort, your story seemsinlike those I have heard in ALS.
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Old 04-12-2018, 11:38 PM #6 (permalink)
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Default Re: Vast symptoms... worried about Bulbar onset.

The ultimate test for MG is most often a special kind of nerve testing (RNS). If MG is really the prime suspect, I would have thought that would already have been scheduled. While only ~1% of MG is negative for all the antibodies usually tested, there are similar syndromes like Lambert-Eaton that merit consideration and for which the blood tests are a little different.

In sum, I think your internist is on point to refer you elsewhere. Like the others, ALS is not the first thing your history calls to mind, but without an EMG, I hesitate to pontificate in this case. The 19th is a week from today, so I would expect you will know more soon. Enjoy your family, and know that they (even your youngest) will be strong support for you whatever you face.

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Old 04-12-2018, 11:38 PM #7 (permalink)
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Default Re: Vast symptoms... worried about Bulbar onset.

Thank you all very much for your time and input. I absolutely love the internet because of groups such as this... it is so nice to get information, support, and comfort from complete strangers♡♡♡
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Old 04-17-2018, 01:13 AM #8 (permalink)
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Default Re: Vast symptoms... worried about Bulbar onset.

The past few days the twitching in my legs and feet have been almost non stop. In addition to that my leg muscles feel super tight... like I'm nervous and can't get them to relax. I'm also having charley horses like crazy tonight.

Thursday can't get here fast enough as that is when I meet with the chief of Neurology at the U of U. The waiting and worrying are so difficult.

I'm convinced I have bulbar onset as my tongue is weak, voice goes hoarse very rapidly, tremors, twitches, hyper reflexes with clonus in left ankle, chronic cough. Shortness of breath with rib pain, and I struggle with phlegm after I eat.

Thank you for letting me vent and listening to me. I don't have anyone who understands. The other day someone made a joke about their eye twitching and teased they probably had ALS since I complainef about twitching. I felt it really rude and heartbreaking. I have many more symptoms than twitching that are worrying me. In fact, the twitching and cramps are fairly new. The hoarse voice, weak tongue, difficulty swallowing, and phlegm have me the most worried. Not to mention the reflexes and clonus..

Please keep me in your thoughts and prayers... I'm am emotional wreck on top of feeling like crud.

Thank you all for listening♡♡♡
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Old 04-17-2018, 01:34 AM #9 (permalink)
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Default Re: Vast symptoms... worried about Bulbar onset.

Hang in there, Missy. People do not mean to be cruel, of course. Sometimes they are just plain clueless or uncomfortable.

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Old 04-17-2018, 08:35 AM #10 (permalink)
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Default Re: Vast symptoms... worried about Bulbar onset.

Only a couple of more days to go. Please let us know how things go.

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Old 04-18-2018, 09:03 AM #11 (permalink)
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Default Re: Vast symptoms... worried about Bulbar onset.

I was diagnosed with progressive bulbar palsy. Hoarseness was one of the first things I noticed although it came and went. Doctor felt it was related to an allergy since I had no other symptoms. It actually took 6 months before anything else showed up. Sincerely hope you avoid becoming part of this forum.
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Old 04-19-2018, 01:38 AM #12 (permalink)
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Default Re: Vast symptoms... worried about Bulbar onset.

I'm a nervous wreck... I meet with the chief of Neurology tomorrow morning. I've read mixed reviews... some love him, others do not. I read tonight that I'm being seen at one of the top 5 neuromuscular clinics in the US. I pray I get answers but nothing that will take me too soon. My toddler needs me. Please send prayers and/or positive thoughts.

I will update you all tomorrow.
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Old 04-21-2018, 01:07 PM #13 (permalink)
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Default Re: Vast symptoms... worried about Bulbar onset.

Missy, You have been in my thoughts and prayers.
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Old 04-22-2018, 08:44 AM #14 (permalink)
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Default Re: Vast symptoms... worried about Bulbar onset.

Praying that the answers give you hope and peace.
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Old 04-24-2018, 06:15 PM #15 (permalink)
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Default Re: Vast symptoms... worried about Bulbar onset.

Based on listening to me talk for an hour and checking me out neurologically, Dr. Bromberg does not think I'm dealing with ALS. He told me to continue with my current doctors and to go home and have a glass of wine. He had no explanation for my bulbar weakness, hoarse voice, etc but did not seem the least bit worried. He agreed with my glossopharyngeal neuralgia diagnosis but had no explanation for the additional symptoms. I was so thrilled when he told to not worry about ALS that I didn't even think to question him further on my symptoms. He agreed to see me strictly to check for ALS. I think since he didn't see anything that concerned him he was comfortable sending me back to my original neurologist.

I still feel like crap, but my stress level has reduced since seeing him. If no answers locally before mid July, I will be seen at The Mayo Clinic in Arizona. Sooner or later something will show up, I've been sick for over 8 months now.
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