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lsasse15

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First off I’d like to say thank you for the recent acceptance into the community, I have so much respect for all of you who are fighting this terrible disease.
I want to start out by saying that I am a 26 year old male who has been healthy relatively my entire life.
Lately I have been having severe anxiety over a few symptoms that have manifested themselves over the past month. It all started after the super bowl in early February I woke up one night and felt awful with severe stomach and back pain, this persisted for about a week until I was admitted to the ER about 2 weeks ago with severe pain that woke me up out of a dead sleep. The ER performed CT scans and blood work to check for gastrointestinal issues in my colon or upper tract. Everything came back negative after a colonoscopy and scan of my mid section.

I was fine until about a week and a half ago I noticed this cramping in the back of my right knee, it was subtle at first but over the past week it has gotten worse and now it is getting more difficult to walk on my right leg, my GP noted that gallbladder issues can cause back and it band pain in the leg so I went to get it looked at, everything once again came back fine. I was still having some discomfort and cramping in the knee followed by twitching on that side of my leg as well as twitching in my other leg and lower back, a few days ago I decided to visit a neurologist due to feeling worse with each day, the neurologist said my reflexes were brisk but everything else was normal during the ititial physical test after the appointment he ordered a few blood tests and an EMG scheduled for next Thursday, I have always had fairly high anxiety over any health issues since I’ve been healthy for the most part.

What is concerning me is that I have not had any sort of appetite for about 2 or so weeks and I have lost weight as a result, over the last 2 weeks I have had extreme fatigue that has kept me tired at work and made me head for early bedtimes. I have not slept well at night Partially due to shortness of breath that I’ve noticed when lying down without my head raised, I have also felt out of breath walking up stairs. I have had excessive twitching for the last week in both legs as well as part of my mid-section and have had cramping in my right left near the knee and now it is in my left foot as well.

I know I am most likely thinking way too much into this but my neurologist mentioned I could have Guillain-Barré syndrome due to my recent bout with stomach issues. Would the symptoms I’ve been having lately match those of what you would typically see with Guillain-Barre? I continue to feel weaker each day particularly in my extremities, my doctor said to visit the ER if I notice my reflexes beginning to slip however they seem to be fine. If anyone on here has had an experience with Guillain-Barré syndrome I would like to hear about what their experience was like when they first were diagnosed with it, I don’t want to be a hypochondriac and admit myself to a hospital for something that is unfounded at the moment but with the anxiety I have over my health I would appreciate reassurance from the community.

Thank you all for your time
 

lgelb

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I don't see any reason to worry about ALS. GB is pretty rare and doesn't seem to apply very well from your description, but if any suspicion remains after the EMG, I'm sure they will do an LP to clarify.

Meanwhile, I would try to eat and drink what you can, and stay in touch with your PCP as this is not necessarily neurological.

Best,
Laurie
 

lsasse15

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Thank You for the quick response Laurie, because of my anxiety I think the neurologist scared me a bit by saying that even though he was most likely just saying that as a precautionary statement. I think my anxiety over health is trained to think the worst of everything.

I had figured that all of this was progressing too quickly to be ALS but was worried over GB since I read it can occur quickly for a few weeks after an infection or virus.

Regarding ALS, can it cause gastrointestinal issues and appetite loss at onset or does that traditionally come during the later stages? I had appetite loss, weight loss and back/stomach pains before this latest onset of weakness in my right leg, these would not be any sort of precursor to these symptoms correct? The only symptoms that concerned my neurologist when I had a visit was the weakness in my right knee and the twitching.

I guess the EMG will be the teller of what if anything is wrong next week.
 

lgelb

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GI symptoms are not typical in early ALS, no. There can be weight loss but not as you describe yours. Pretend you have the flu and try to work your way back; you want to feel your best during the testing. All the fatigue, etc. can be ascribed to malnutrition/dehydration, and viruses happen, so we can't pass judgment on chicken and eggs just yet.

Let us know what the EMG shows.
 

lsasse15

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Will do, I have it scheduled for early Thursday morning so I'm hoping i can get the results before I head out on a business trip in about 2 weeks time.

Another thing of note my Neurologist was able to give me the write up of his findings from the exam he conducted last week and was able to provide me with the blood tests i had done the other day.

Regarding the Physical Test: Everything was normal other than the fact that my knees were slightly brisk in reflexes and that I noted a decreased feeling of the pinprick test below my shins.

The blood test was normal other than elevated an elevated Creatine Kinase level at 213 U/L and an elevated Sed Rate at 19. They tested for lyme disease, thyroid, b12 ect..... as well and all were normal.

The main concern in his writeup was for GB given the quick onset of my symptoms over the last 2 weeks and i think that is why he had the EMG/NCV test ordered so quickly. I was initially worried about this test because of the urgency that he ordered it with being the next week following my initial appointment with him, my anxiety this entire week was making it hard for me to focus on work or anything other than the symptoms that i have been experiencing. I was worried this was something MND related but this all came on suddenly in about 3 weeks time so i figured it was a little soon to be related to something like ALS. I have noticed that the cramping in my right leg has moved into my thigh now and there is some in the ball of my left foot as well as well as constant twitching day and night mostly in my right leg but here and there all over.

I'm anxiously awaiting the EMG on Thursday so i can get the results back to at least help my anxiety over this. I've always been unable to manage my anxiety over health poorly.
 

lsasse15

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Quick update: I was able to eat a full meal again today for the first time in about 2 weeks, took it slow and finished it in full, improved my mood quite a bit.

I’m still having cramping and twitching issues in both my left and right legs, the cramping has shifted to my thighs in both legs and I’m feeling fatigued when walking around now, noticed I’m having trouble stopping and going on a dime while walking. This cramping onset has come on in about a week, I’m still having twitching as well in both legs and in most of my mid-section. Also noticed I’m feeling very cold quite easily. All of this seems like it’s progressing very quickly and I’m quite worried about it, I’m worried about the EMG on thursday now. I know I’m supposedly young for this but I can’t help but feel awful about this
 

lsasse15

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PALS/CALS or anybody really that’s had an EMG I have a quick question.

I had my EMG done yesterday by a tech with no neurologist/doctor present, i had questions during the process but was not able to get answers due to the absence of a neurologist at the test. I tried to ask him about the test and he said the neurologist would interpret the results and contact me once they were reviewed, when I asked him if he noticed anything being off with the test he said “it’s not too shabby”. Are the techs legally not allowed to answer questions about the tests or was he withholding information after it was done? I’m assuming they can at least interpret results since they know how to administer the test, my anxiety is kicking into overdrive since I have to wait to hear results after the weekend.
 

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I think they are not allowed to offer their own interpretation. Similar to having an xray or a scan. Radiology techs usually know what they see but can’t say anything to the patient.

Even when emgs are done by emg specialists who are MDs they may not be allowed to give results depending on the policy of the institution

This is your anxiety talking
 

lsasse15

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Thanks for the reply Nikki, the neurologist that saw me and initially ordered it was out of town this week, there was another neurologist that was handling my case until the other one got back. I guess I was assuming there would be one present for the test.
 

lsasse15

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Well I haven’t physically received my EMG/NCV results yet by my doctor called me and said the EMG was normal, I have a follow up appointment with him in a couple of weeks. He tested the two legs I was having cramps and twitching in as well as my hips and lower back. I’m still having some twitching and cramp like pain in both legs mostly in the thighs.

He did say he wanted to discuss my MRI results when I saw him in a few weeks because I guess they found minor multi-level disc bulging in my cervical spine and a fairly significant disc herniation in my lumbar spine. He also gave me a referral to a neurosurgeon if there’s any steps I need to take there but I don’t really think I’ll need surgery at this stage. I’m relieved that this looks to be a cause of a lot of the issues I’m having.

I guess I’m just a bit surprised that herniated/bulging discs can have the same type of symptoms that many neurological diseases have. Thank you to all of you on here who have responded and read my posts, I will post an update if anything comes back with the follow up appointment.
 
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lgelb

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Thanks for checking back. You are not the first person who didn't realize that disk issues such as herniation can relate to problems in the arms, legs, hips and neck, to name a few. Nerves in the spine connect to nerves that control movement and feeling in all those places and more.

Back surgery is less common than it used to be as there are many other therapies and approaches to try. I am sure that some will reduce your symptoms.
 

lsasse15

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Quick question regarding the EMG test I had done. When I had the test they tested pretty much my belly button to my feet on both sides of my body, recently within the past week I noticed that my left arm is feeling fatigued when lifting or holding items.

Would the EMG have picked up anything neurological going on elsewhere in my body other than the lower areas it was tested in? This development in my arm was recent and I noticed it while at work the other day when having to put items on a shelf. My neurologist did not mention anything significant with disc/spine issues in my cervical spine so it doesn’t seem like anything is causing it there. Just want to make sure the EMG wouldn’t have missed issues going on elsewhere in my other limbs they didn’t test since this was a recent development.
 

lgelb

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ALS is a disease of all the voluntary motor nerves, and no one tests all of them as there would be no point in subjecting anyone to that. The hallmark of the EMG in ALS is to show damage to areas that don't show weakness as yet. You are in the clear.
 

KarenNWendyn

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Thanks for sharing your EMG results. It is completely normal and rules out ALS. You can now let go of ALS and move on.

Best wishes,
 
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