Constant muscle fasciculations for over a month - What is going on?

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Alright so my story is long. Bear with me.

I am a 26 year old male. About 6 months ago I lost 30 pounds without trying, although I had just gone off of Paxil 40mg for the first time in 8 years.

About 2 months ago I developed random muscle twitches throughout my body, about 1-2 twitches per minute, so I didn't think much of them.

About 1 and a half months ago I had some sort of gastrointestinal virus with symptoms of extreme stomach pain, low-grade fevers, dry-heaving, chills, shaking chills, cold hands and feet, nausea, dizziness and loss of appetite which led to another 20 pounds lost in about 2 weeks.

Near the end of this gastrointestinal virus I developed constant muscle fasciculations in my calves as well as the random twitching found elsewhere throughout my body. Along with tremors in my hands, arms and legs. My stomach also growls many times throughout the day, I'd say 20-30 times for about a minute of growling each time. My arms and legs also get numbness and tingling from time to time.

About a week ago I also developed constant muscle fasciculations in my feet as well as my calves now with the random twitching found elsewhere throughout my body. The tremors in my hands, arms and legs are also there.

My doctor has ordered blood, urine, thyroid, electrolyte testing and everything comes back normal, except for a slightly low Vitamin D level. She thinks it is all related to anxiety and has since put me back on Paxil 40mg along with 5000 IU of Vitamin D3 daily.

The fasciculations, twitching and tremors all persist and I have hyperreflexia. She has now ordered an EMG, but I have to wait over 2 months to get that done. I have definitely felt weaker, with not not as much energy as I used to have and not as sharp as I should be.

Is there any other testing I should be requesting? I asked about an MRI and she said she wants to do the MRI first to see what it shows. I feel like something is being missed here and I'm afraid waiting 2 months just to get an EMG, I will continue to deteriorate more during that time.

What should my next step be? I definitely don't want to wait 2 more months just to get an EMG done. I feel like this is more urgent than that seeing as my symptoms have been  getting worse at a somewhat alarming pace.

What seems to be going on with me?

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10 Replies

  • Posted

    Mild guillan Barre. I had something similar after two vaccinations. This was 15 months ago. I was more sick than you but very similar. I had emg it was normal after three months. A spinal tap should have been done the first few months. To look for elevated protein. I didn't get one and so they told me autoimmune response to virus caused the twitching. That is what mayo clinic diagnosed. I was put on celexa. I had lost 20 pounds from gastroparesis. I hadnthe shaking weakness tingling numbness. I found a neurologist 9 months later who said it was GBS no doubt. Could have killed me. I was lucky. My twitches slowed after 8 months but never fully went away. They went from all over every minute to handful a day. It took me almost a year to ride my bike again and exer use normal but when I over so it I get really fatigued and the twitches increase but after rest they slow back down. Best of luck. I had lucky with eating more protein taking alpha lipoic acid and selenium vit d3 mine was deficient too. Other labs beside my esonophils were absent were all normal. Good luck let me know how it goes. If they do emg let me know. They should habe done it soon because after 3 or 4 months you may return to normal and there will be no trace. My first one showed axonal issues but I went to mayo 3 months later and it had resolved so they wouldn't trust the first emg. My neurologist said I recovered quick but will have these weird sensations and twitches up to 2 years or maybe forever unless the damage wasn't permanent.

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    • Posted

      I'm sorry to hear about all that you have gone through. sad My GP has scheduled an EMG for me, but it is 2 months away. Which will be almost 4 full months after most of my symptoms hit me. I am trying to get into see a neurologist as soon as possible, but the waiting lists are so long in my area.

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    • Posted

      I am sorry about yours too. I am so sorry they are going to take so long to do your emg. I was so upset with mine that I thought I developed ALS because of the constant twitching all over but I was so scared I wasnt using rationality. Mine was a sudden onset all over while no was ill. Mayo has said people can develop ywitching in muscles after a autoimmune illness or illness. Many doctors will say it is anxiety but I believe the twitching causes the anxiety. If it was the only thing that was the precursor. I am sure you will have a autoimmune response to a illness that caused yours becauae you sound similar to me. They may not call it guillan Barre but no know it probably was and whether the tests show it or not. Until you get to a doctor focus on your immune system take supplements antioxidants and vit d3 and do some light exercise. Let me know how you feel. I will always respond and check in.
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    • Posted

      Thank you for your reply. Yes, I hate to wait so long and I also fear I have something such as ALS as I started having random twitches about a month before I had the stomach virus I believe. But the constant fascinations didn't start until the end of the stomach virus. Immediately after I had some extreme trouble walking and standing too. I still do. But it might be progressing some. It's hard to tell because I'm so fatigued. I've been trying to do some light exercises and have been taking vitamin D3 daily in addition to some very light exercises and walking.

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    • Posted

      I understand the worry about ALS. I am older than you much. I am 43 and all this started 15 months ago. So my age scared me with the symptoms. It is more common in men older than 50 but can start at 40. It is rare for someone your age. I wont lie to you and say no possibility but rare. I can tell you sudden onset of weakness all over is not a symptom. Mine was like that and as the no the went by my weakness disappeared. It did take however 6 or 7 months. Most people I talked to said they just went to iae their arm or leg hand foot and it just wouldnt do anything. They felt fine just wouldn't listen to the commands their brain was giving it. I can also tell you twitching is a symptom of ALS but not the only. I can help you by telling you to take the alpha lipoic acid I take 600mg or more a day but be careful you may want to start at 200 mg work your way up it is only antioxidant but it will help your energy. Eats bananas nuts everyday Brazil nuts or if you like supplement with selenium 200mcg a day. I read this is a study of some one who had the same symptoms and it worked. From the national institute of health. The only thing is it said if you jad silver fillings fet5rid of them I have two so when I see my dentist next I will ask to remove them. It can't hurt but it may help. Keep taking your vit d3 even after your level returns to normal mine was a 12. I am now a year later at 40 it should be like 60 or 70 for best results though 30 is considered normal. Tell me about your twitches and hiw long you have had them. I can tell you that my neuromuscular neurologist says twitching isnt important in als it is a secondary symptom to the disease. He says some people get few some get a lot some don't get them at all and they always stop in als. So he says everyine twitches to some degree even healthy people. He said he had a guy come in with then all over he could see them on his chest just everywhere and they did emg it was completely normal. He never developed anything. So they dont know why people just start having them. Maybe an illness but rarely a disease like als. Though it can happen. The most common is people come on for the issue that they can tie their shoes or button their shirt anymore. The weakness comes on graduallu not suddenly. It worsens over time. Let me know. Whet are you if tour in the US dont wait call the neurologist and insist of earlier appt. Tell them how weak you are. Ask for waiting list of cancellations. Who you really need to see is a neuromuscular neurologist. They do good emg that you can trust.

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    • Posted

      Well before the illness I would get a random twitch in my biceps or calves a few times a night. But around the 6th day of having the gastrointestinal virus I started the constant twitching in my calves. Along with random twitching all over my body. And then about a week and a half ago the constant fasciculations went into my feet as well.

      I am on a cancellation list to get the EMG and trying hard to get in to see a neurologist as soon as possible. I keep testing my strength daily to see if I notice any actual clinical weakness that I couldn't do the day before. Currently, I've been able to stand on my toes and on my heels. Stand on one leg and then the other for the past month. But I definitely don't feel up to doing anything at all really. While I haven't fallen down yet, I fear that I will because of the weakness I feel.

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    • Posted

      I am thinking you had a mild case of Guillan Barre. It happens from gastrointestinal illnesses influenza and surgery. Your body just goes haywire and doesn't know what to attack and attacks your nerves. It can range from mild to serious. My neurologist says you can fall anywhere on the spectrum from very mild to almost dying. If the neurologist doesnt believe it is Guillan Barre they will call it a autoimmune response to a virus.

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    • Posted

      You get really weak in arms legs from the nerve interruption. After few months to 6 month you will feel better. Then notice you will improve. The twitching may or may not go away. Just start building up your immune system and see if it helps. B12 will give you energy.
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  • Posted

    Hi there. Just wondering how you are getting on?

    I’ve had these muscle twitches all over. I had a viral infection for two months and just when I thought it was over, I got these twitches. I keep focusing on them all the time! Did you get your EMG?

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