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Old 04-22-2015, 08:13 AM #1
Ragtop262 Ragtop262 is offline
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Originally Posted by twitchwitch View Post
Hi everyone - I really need to ask for your support here. I am in a very bad way and have some questions about your twitching/fasciculuations.

I am having a hard time with my twitches, I keep thinking they are due to MND. I have a diagnosis of plexus neuritis, but it is going to be double checked this week by two different neuros, tomorrow and Friday. I have some questions and would like to see if I am alone. I have had random, widespread twitching for 2 years now, but these twitches in my affected arm are different.
  1. Has anyone else had this fear with their twitching - that it could be due to something even more sinister than neuropathy?
  2. Is twitching a very common symptom of neuropathy, or just somewhat common?
  3. Do you have twitching in one spot, or several spots, that are like "hot spots" - where in that particular spot, the twitching is more constant? I have this area on my forearm that keeps acting up.
  4. Are they constant, meaning non-stop, or do they break/pause, but then start back up again? Mine break/pause.
  5. Do you have weakness with the twitching? I do.
  6. If yes, is the twitching in the weak area or different areas?
  7. Does anything aggravate seem to aggravate the twitching? Mine seem to act up after lots of movement.
  8. Do you have pain in the area of twitching?
  9. Do your twitches stop when using the muscle, or do they just keep going? Mine do both.
Twitchwitch: I know what you are going through - I was in a very similar place several months ago. I did so much research on ALS/MND and BFS that I could probably write a book on it. Go to your doctor appointments this week. Tell them your fears. Then listen to what they tell you. Hopefully they will be able to reassure you that you don't have what you fear.

But ultimately, time may be the only thing that will convince you. I'm sure you have done your research, so you know that MND is almost always relentlessly progressive. So every day, week, month that goes by without your weakness getting worse should ease your worries more and more.

Do your best to stay calm. Spend time with your family and friends - this will help you keep your mind off of the things that trouble you. Remember: Stress and anxiety will make your symptoms worse - especially twitching (the two leading triggers for BFS are stress/anxiety and physical illnesses virus, etc.)
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Old 04-22-2015, 08:23 AM #2
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Thank you, I am sorry you went through this but it helps to know that someone knows what this is like. I also have said that 'I could write a book'...
My neuros know my fears, and one of the 3 so far says "no to ALS" because of the pain and sensory issues. I did have pain in this arm, big time, in December...since then the pain has died down, but is still there, but the weakness and twitching got worse.

So that is why I wanted to know how common twitching is with neuropathy and characteristics of the twitches people with neuropathy experience.
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Old 04-22-2015, 08:39 AM #3
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Twitching may be a reaction to SSRI drugs. If you take antidepressants or Cymbalta you may be have side effects called extrapyramidal signs from them.

You may get twitching from any stimulant, decongestants for nasal congestion, or even high caffeine intake. Stimulants for ADHD or recreational cocaine will cause twitching. Your own adrenalin levels may be elevated by fear, or being high strung and these can cause twitching.

Poor potassium levels and poor magnesium levels may cause twitching. Rapid changes in calcium levels also may affect the muscles. Elevated thyroid activity and disorders of the parathyroid glands will affect the muscles as well.

Low blood sugar spells. These are common in pre-diabetics. You may test out in a 2 hr glucose tolerance test as normal, but a 4 hr one will show the low spells.

There are DNA tests for MND:
http://www.nhs.uk/news/2011/09Septem...e-disease.aspx

I have corrected the broken 2nd link, and posted the title of the article too... below. Sorry...
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Last edited by mrsD; 04-22-2015 at 11:25 AM.
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Old 04-22-2015, 09:26 AM #4
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Quote:
Originally Posted by mrsD View Post
Twitching may be a reaction to SSRI drugs. If you take antidepressants or Cymbalta you may be have side effects called extrapyramidal signs from them.

You may get twitching from any stimulant, decongestants for nasal congestion, or even high caffeine intake. Stimulants for ADHD or recreational cocaine will cause twitching. Your own adrenalin levels may be elevated by fear, or being high strung and these can cause twitching.

Poor potassium levels and poor magnesium levels may cause twitching. Rapid changes in calcium levels also may affect the muscles. Elevated thyroid activity and disorders of the parathyroid glands will affect the muscles as well.

Low blood sugar spells. These are common in pre-diabetics. You may test out in a 2 hr glucose tolerance test as normal, but a 4 hr one will show the low spells.

There are DNA tests for MND:
http://www.nhs.uk/news/2011/09Septem...e-disease.aspx

This is a very interesting article too... has a nice diagnostic graph in the beginning:

nnp.bmj.com/content/74/suppl_2/ii3.full
Thank you, I definitely have twitching due to nerve/muscle denvervation, confirmed by EMG. The other BFS twitches are probably due to whatever, but this in my arm, where neuritis was diagnosed, are different. No magnesium or other vitamin deficiency, no hormonal problems...the meds I am on, I have been on for awhile and they are not SSRI. I don't drink coffee, etc.

So this is why I want to know - if neuropathy itself (without those other factors) can cause twitching and how common? Like, do most cases of neuropathy cause twitching? What are the characteristics, like constant, all over, hot-spots, etc. I've read articles that yes, twitching is a symptom of PN, but I want to know from those who actually have PN, what do you say?

Also, MrsD - that second link you posted does not work for me.
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- Mar 2015 - Spine herniations at C5/C6 and C6/C7
- Apr 2015 - L. Shoulder/Arm Neuralgic Amyotrophy/Plexus Neuritis

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Old 04-29-2015, 04:48 PM #5
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I don't know how common the twitching is for neuropathy or what it even means. I have everything on your list except for the weakness while twitching. My whole body especially my arms are weakened from what ever happened/is happening to me, but the twitching is random and migrates everywhere.
My neurologist hasn't said anything about it. He asks me if it is still happening when I see him and he just puts in in his computer. I think he is just waiting to see what happens with me.
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Old 04-29-2015, 11:03 PM #6
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I was in the military when an outbreak of mono happened on base. They screened everyone & I was positive for Epstein Bar. I didn't have mono as a kid, but obviously I was a carrier. I think EB is also responsible for my positive screen for Lyme. Western blot is neg.
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Old 04-30-2015, 08:48 AM #7
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Originally Posted by Healthgirl View Post
I don't know how common the twitching is for neuropathy or what it even means. I have everything on your list except for the weakness while twitching. My whole body especially my arms are weakened from what ever happened/is happening to me, but the twitching is random and migrates everywhere.
My neurologist hasn't said anything about it. He asks me if it is still happening when I see him and he just puts in in his computer. I think he is just waiting to see what happens with me.
I have it everywhere, even my eyes, like where they wanna pop out, and I have no weakness. And waiting to see a nueroligist for 8 months now.
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Old 04-30-2015, 08:48 PM #8
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Thankfully I've loved sardines since I was a little boy. Sardines are packed with Omega 3. I also really like mackerel which is high in Omega 3 as well. I eat about two cans of high quality sardines a week and mackerel once a week. Love them with hot sauce!
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Old 05-01-2015, 09:44 AM #9
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Thankfully I've loved sardines since I was a little boy. Sardines are packed with Omega 3. I also really like mackerel which is high in Omega 3 as well. I eat about two cans of high quality sardines a week and mackerel once a week. Love them with hot sauce!
That hot sauce could be aggravating your PN symptoms.
Some people react to the nightshade veggies (peppers are part of that family.) I'd avoid it for a month and see if things get better without it.

The fish are good... but the hot sauce may not be agreeing with you now.
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Old 05-02-2015, 08:29 AM #10
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The magnesium i take is oxide and the dr said nothing. Think I should change it??
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