Old 02-01-2019, 12:12 AM #1
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Default Terrified Bulbar or Limb Onset? Varying Symptoms

Hello,

I've been reading this forum for a few weeks now and I've held back from posting my symptoms but it seems to be progressing so I'm more anxious.

I'm 28 year old male and I'm extremely worried that I might have early symptoms of Bulbar or Limb onset ALS. It all started about 7 months ago with severe twitching in my groin area for about a month. After that, I started having sharp stabbing pains all over my body (like someone was cutting me with tiny blades), burning feet, and feeling of ants walking on my skin and head and constant twitching that episode lasted for about 3 weeks. Then I just had constant twitching all over body including muscles I never knew existed with no weakness for months and intermittent fatigue then recently new symptoms started to appear.

Now, I have a feeling of tightness around my neck and when I eat or drink, it feels like there's a lump in there but I can still swallow but my throat feels fuller after eating. My neck and shoulder are also weaker because they ache when in standing position for more than 10 minutes and I also have sharp pain on the right side of my neck when I tilt my head forwards. I also stumble on my words occasionally (not sure because I'm anxious and always watching my words to check if I'm slurring). The fingers in both my hands also seem to tire quicker than before, like it moves a tad bit slower after been used for a bit, for example typing (spasticity?). They also feel slightly weaker when I wakeup in the morning but normal during the day. I also have frequent palpitations.

The most scary bit is a few weeks ago, I have a feeling of tightness in my lower left leg (calf to ankle) but recently I noticed the calf in left leg is smaller than the right leg (1/2 inch), the right also seems to have fuller muscles, I also have slight weakness / pain in my knee but I can still do the same leg strength training like usual but I can feel the awkward tightness there when I walk (asymmetry?) I also have a constant ache in that thigh for a few days now.

I spoke to a neuro over the phone and he said it doesn't sound like ALS, but likely a issue with my cervical and lumbar spines. I've also seen my family doctor and she did some strength tests, did some blood work (CK: 283, Creatine: 133), heart tracing (for palpitations) and she said it's just anxiety not ALS but wanted me to see an Internist about my elevated kidney function. She referred be to a CBT therapist, Internist and Neurologist to ease my anxiety (2 months out: debating getting on Xanax to cope until then).

My symptoms and elevated CK is having me worried. Is it possible for a muscle to atrophy by 1/2 inch with no major weakness? Does Bulbar onset start this way (mild weakness in neck)? Lastly is it possible to have both early Bulbar & Limb onset like this affecting multiple areas at the same time? I know ALS is about failing not feeling but I'm just anxious about the early symptoms because this is a progressive disease.

Thanks in advance
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Old 02-01-2019, 12:44 AM #2
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Default Re: Terrified Bulbar or Limb Onset? Varying Symptoms

Hi there- I'm hoping you've read the http://www.alsforums.com/forum/do-i-...-symptoms.html post. It addresses things like pain, sensation issues, etc. You report symptoms that are all over the place and do not fit into the ALS pattern. Sounds like you have a great doctor who has provided you the proper referrals.
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Old 02-01-2019, 12:47 PM #3
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Default Re: Terrified Bulbar or Limb Onset? Varying Symptoms

Thanks for your reply, I've read the sticky. I'm just concerned about the tightness in the throat with neck and shoulder issues because I've read some PALS on this forum where there initial symptoms where similar to that.
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Old 02-01-2019, 08:23 PM #4
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Default Re: Terrified Bulbar or Limb Onset? Varying Symptoms

Rocky, I don't know what you think you've read where, but perceived tightness in the throat or anywhere else is not a harbinger of ALS. Bear in mind that any kind of pain in one area of the body can hop around and seem like new pain. You have a number of different hot spots, which can mean anything or nothing but not ALS.

When are you seeing the internist about your kidneys, etc.?

You acknowledge your anxiety, you're having palpitations, and you know that it can cause/worsen physical symptoms, so what are you doing about that? When you are less wired, it will be much easier to see what, if anything, is left to worry about. These things feed on themselves.

If you had significant loss of strength or atrophy, your doc would have seen that, don't you think?

Stretching, swimming and walking are all ways to release energy and calm your over-wrought muscles as well. You could get a lot of miles in before your appointments.

Best,
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Old 02-05-2019, 08:17 PM #5
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Default Re: Terrified Bulbar or Limb Onset? Varying Symptoms

Just wanted to follow up with a quick update. I finally got too see a neuromuscular specialist today after calling their office everyday. I told him my symptoms and expressed I'm scared I have ALS. He said he didn't think so and asked if I have any muscle failure / weakness (can't hold my head up, can't lift my leg, can't lift cup, choking, etc); I said no, he then said I don't have ALS or symptoms of it, he also said my symptoms are all over the place which is not how ALS works, he said 99% of the people coming to him scared about ALS don't have it. Said my calf isn't atrophied, and that's not ALS atrophy looks like. He then proceeded with strength, reflex tests (normal) and NCS & EMG (I didn't know it was that painful). He said my CK level is normal since I'm AA and most scale cut off is for white males.

NCS came back abnormal (CTS in both hands), EMG was clean. He said it's BFS, prescribed me Flexeril and referred be to a Psychiatrist.

My question is, does it matter if he tested my neck, shoulder or not for Bulbar ALS? Since I'm having fasciculation everywhere, he said it didn't matter and proceeded testing the dominant side with the most fasciculations. He said the tests was sensitive and ALS would show up regardless if I've started having fasciculations in that region.
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Old 02-05-2019, 09:20 PM #6
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Default Re: Terrified Bulbar or Limb Onset? Varying Symptoms

Your doctor was right. No need to second guess him with a bunch of strangers on the internet! He's the neurologist with both the schooling and the experience who examined you in person, conducted an EMG and NCS, took the time to explain his exam results and gave you a proper diagnosis and treatment plan.

Glad your appt went so well and you were cleared of ALS.
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Old 02-09-2019, 03:05 PM #7
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Default Re: Terrified Bulbar or Limb Onset? Varying Symptoms

So scared, brand new symptom. I couldn't sleep at all last night, every-time I close my eyes to sleep it feels like my breathing halts and I have to gaps for air, have constant palpitations (skip beat), chest is burning. I couldn't even get the sleep process started. Reading the symptoms online it seems to be "Central Sleep Apnea". I was at the ER all night yesterday and they can't find whats wrong, all the tests came back normal (blood, ct scan, ekg, x-ray, etc). I'm lost I don't know the next step to take. Please advice
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Old 02-09-2019, 03:11 PM #8
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Default Re: Terrified Bulbar or Limb Onset? Varying Symptoms

Your latest symptom is classic for anxiety.

Look, you have a clean EMG and were cleared of ALS by a neuromuscular disease specialist. That’s it. You do NOT have ALS. Period.

It is not fair to throw additional questions and symptoms at us because we are not a general health forum and we’re not here to babysit your anxieties and neuroses.

Sorry to be so blunt, but that’s how it goes.

Best of luck.
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Old 02-09-2019, 03:16 PM #9
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Default Re: Terrified Bulbar or Limb Onset? Varying Symptoms

This is not a general health advice forum. Please speak with your doctor about your next steps. You have been cleared of ALS- this is a forum that exists to support those with ALS and their caregivers and does not have the capacity to provide support for health anxiety or provide diagnoses.

You can not diagnose yourself with complex neurological issues via Dr Google. If you have new symptoms that concern you, your family doctor really is the person to consult.

Please understand the people here don't exist to provide you support for your anxiety- it really is important to work with your doctor. Please take care of yourself and start working on your health anxiety using the recommended treatment by the specialist you have already visited and who cleared you of ALS.

This thread is closed. Please don't open another.
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