Is this ALS? Very Worried!

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tiff74321

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Hi all, thank you for taking the time to read this post and I am grateful for any responses.

I am a 25 year old female and my symptoms first started on February 2nd with a tingling sensation in my left hand (due to ganglion cyst I believe). However, this sensation soon went into my other hand and feet and also muscle twitching of my foot. I went to my GP and they ran some blood test and determined I am deficient in vitamin B12 and vitamin D. After starting both vitamins my tingling sensation went away and a large majority of the muscle twitches went away as well. About five days into taking the vitamins I started to experience muscle spasms (not painful) in my legs and feet and now they are all over my body (including face and tongue) and also a achy feeling in my neck, jaw, legs, and arms. I went back to my GP and they lowered my vitamin D levels and attributed the muscle spasms to stress / anxiety. I now think I have muscle atrophy on my hand with the cyst on it (the cyst came back). However, I don't feel any muscle weakness but achiness in my fingers and hand. It's been over a month so, I have decided to schedule a neurologist appointment. I'm extremely worried and was wondering if these are signs of ALS or is this my stress and anxiety getting the best of me?

Thank you for anyone who responds, I truly do appreciate it!
 

ShiftKicker

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Hello- please make sure to read here: Read Before Posting

It sounds like your questions about symptoms are already answered by what your doctor has turned up! Make sure to read the above link really carefully, as it outlines why the things that bring most people seeking answers to this subforum do not have ALS.

With regards to whether your stress and anxiety are getting the better of you- it's likely! Your doctor has provided you answers already for the sensory issues you're experiencing, but you have doubts that have prompted you to go to the worst disease you can come up with and you are trying to match symptoms to that disease even when you've got answers and solutions.

I hope you can keep working with your doctor to work on getting help for your treatable symptoms and that you will be able to accept your doctor's reassurances.

Take care
 

tiff74321

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Thank you for responding, I truly do appreciate it! I am very happy my sensory symptoms have subsided but what makes me very very nervous is the pain, stiffness, potential hand atrophy and body wide muscle spasms.
 

lgelb

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Um...has anyone recommended removing the cyst [again]?

You are right, your anxiety is getting the better of you. You can't diagnose your own atrophy, and bodywide "spasms" argue strongly against ALS. With no clinical weakness, there is no reason to suspect it. It can take weeks to months to settle into the right vitamin levels, and I would also want to explore why you were deficient in the first place, as the answer could affect every issue you are reporting.

Best,
Laurie
 

tiff74321

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How long should a neurologist test each muscle during an EMG? He said both legs and arms came back clean (which I am very very happy about!) But each muscle was tested no more than 1 or 2 minutes.
 

Nikki J

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That is perfectly adequate. I have had multiple emgs for research. Normal muscles don’t take long at all
 

tiff74321

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Hi Nikki,

Thank you so much for responding! During both emg's (legs and arms) I feel as though some muscle's were even tested less than a minute. Do you think that is adequate time? And I mentioned having a lump in my throat but he said not to worry about it. Knowing that is a symptom of bulbar ALS would something show up on the previous EMG's?
 

Bestfriends14

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A lump in your throat is not an ALS symptom, and from what I read of your EMG description, he tested enough muscles. Honestly, you're really trying to find ways why you have this disease, yet you don't evidence having it at all.

Truly, this is something that should bring you relief. I'm not sure what is going on with you, but the only recommendation I have is to continue working with your docs.

I wish you well and please take good care.
 
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wishmobbing

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I'm extremely worried and was wondering if these are signs of ALS or is this my stress and anxiety getting the best of me?
So you went to see the neurologist, got the EMG and got cleared, which is no surprise for folks here who read your first post. No ALS, good, that's settled.
Now to the second part of your question? Is getting your anxiety the best of you? Pretty much seems like it. So why don't you go to doctor to get that checked out? It's a more likely and more treatable explanation for your sensation. Ganglion cysts are annoying, I had/have some really visible ones on the back of my hands that where causing pain during a stressful period in my mid-twenties. I can tell from experience that there's very much a psychosomatc dimension to them.
If I were in your shoes I would get out of doom-reading neurological disease and focus on reducing stress. Take a look at your working position or hours of smartphone usage. Take care!
 

tiff74321

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Thank you both for responding, I really do appreciate it. My mind is definitely calmer than where it was a few months ago. The question I was asking was how long should a neurologist test each muscle? I previously stated 1-2 minutes for each muscle but I'm pretty sure it was less than a minute each. Is that an adequate enough time for a normal muscle? Also, would bulbar symptoms show up on a arm EMG? Thankfully, I did have the ganglion cyst drained again and a lot of my symptoms with my hands have went away.
 

wishmobbing

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I imagine EMGs works something like this compared to... let's say an autopsy. So a coroner looks at a body to determine if there are wounds that could have caused death.
Looking at the left arm: there is clearly no wound. Check. That went quick. Inspecting the right arm: no wound. Check. Inspecting a shoulder, ah! There's a wound. Now the coroner will have a closer look at the wound. That will take more time, measuring width and depth, looking at the shape that will tell if it's a bullet or knife wound.

If a good look shows nothing out of the ordinary, there's just no reason to look longer at nothing. If there is anything out of the ordinary that's worth more time and a closer look. A short exam doesn't mean your doctor's not thorough. It just means there's nothing there to worry about. (My PALS EMG (and maybe another test with needles?) that led to his diagnosis took about two hours. Not because it was so difficult to find something but because they found something in just about every place they looked at and wanted to be sure before they hit a young guy with a diagnose like that.
Your EMG test was done by a professional. Trust them.
 

tiff74321

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Hi again ,

Unfortunately, I am back again. Like I stated previously, I received two clean EMG's in April on both arms and legs. However, after joining a BFS group some of the members have mentioned only a neuromuscular doctor can rule out ALS. The neurologist who performed both EMG's has over 30 years of experience and has ensured me I do not have this disease. I do not mean to come off any way but is this true? Should I find a neuromuscular doctor to go to?
 

ShiftKicker

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Hello-

If you take a look back at your previous posts, what stands out is a distrust of what medical professionals have told you, despite their expertise. The BFS communities collectively are filled with people who have health anxiety and who are very quick to dismiss the experience of various medical specialists, clinical exams and test results because their anxiety won't let them move on. You've had, as you stated, more than one clean emg and clinical exams by a neurologist who has over 30 years of experience. If you wish to disbelieve that doctor and their extensive experience, no one here will be able to reassure you. If you want to go the route of seeing yet another specialist, that is your choice- will you actually believe them when they clear you?
 

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You should definitely seek medical help.
Not for ALS but for your fixation on a disease you have been cleared of.
But as I read back through your thread here, I realise that you do not trust qualified doctors, instead you want to seek emotionally charged responses from strangers.
Please, maybe keep discussing this in the BFS group where this is a common topic, or see your doctor. We have finished the amount of reassurance we can give you as we will not argue against your doctors advice.
 

lgelb

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Both B12 and D deficiencies can cause twitching.
Ganglion cysts often come back.
When something isn't right in your body, you often focus on it, and then other things that are not really problems.
The answer to your question is no, with two clean EMGs and the lack of clinical impairment you report, you don't need any more visits. And those specialists, as you can imagine, are much in demand by people who have neuromuscular diseases.

If hearing from one is going to really reassure you, go for it. But make a contract with yourself first, that if you hear it again, you'll believe it.
 
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