Old 11-06-2008, 10:07 PM #1 (permalink)
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Default I am back and feeling lost, extreme joint cracking

Hi all. Some of you may remember me. For 5 months I have been having migratory pains that will hit one area for a few seconds to hours then move to another spot. They feel like deep toothache pains and usually affect my ankles, toes, fingers, hands, spine. A wk after the onset of this I noticed EXTREME joint cracking. For the past 3 months I have had muscle facscilations ALL OVER my body non stop daily. I feel like a popcorn machine. In addition, I have had buzzing in my left foot, sometimes it tingles. For 2 weeks I have been getting muscle cramps

I have a clear MRI in terms of lesions of head and spine, though no contrast was done. Did see mild stenosis in neck. Also, I had an EMG about 1.5 months ago which was normal.

I went to see a 4th neuro today and at the end of the exam he said my exam was fine. He said normally a nuero when presented w twitching all over is concered about ALS. He said he "doesnt think" I have that because I have pains and nerve type things which are not associated with ALS. However, he did say sometimes its hard to tell early on in the disease. Then he went on to say he didnt think it was MS as usually the issues with MS last in one area for at least a few days non stop vs skipping around my body. He also said usually there is not pain with MS but I know a good amount about MS and knwo pain IS associated.

My joints are cracking non stop still and some areas are popping in and out of the socket-pelvis, shoulders---the neuro heard it today and had no explanation. Is this muscle wasting?



Basically he said we just have to wait and see what changes.

So now I am back to being concerned that I could have ALS. I do not have weakness that I notice. The only new things bothering me is the vibrating/buzzing feeling in my foot, muscle cramps, and also my right pointer finger went numb for 2 days.

He said my cord compression was not bad enough to cause this either.

Feedback greatly appreciated.
 
Old 11-07-2008, 01:42 AM #2 (permalink)
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Originally Posted by k2626 View Post
Hi all. Some of you may remember me. For 5 months I have been having migratory pains that will hit one area for a few seconds to hours then move to another spot. They feel like deep toothache pains and usually affect my ankles, toes, fingers, hands, spine. A wk after the onset of this I noticed EXTREME joint cracking. For the past 3 months I have had muscle facscilations ALL OVER my body non stop daily. I feel like a popcorn machine. In addition, I have had buzzing in my left foot, sometimes it tingles. For 2 weeks I have been getting muscle cramps

I have a clear MRI in terms of lesions of head and spine, though no contrast was done. Did see mild stenosis in neck. Also, I had an EMG about 1.5 months ago which was normal.

I went to see a 4th neuro today and at the end of the exam he said my exam was fine. He said normally a nuero when presented w twitching all over is concered about ALS. He said he "doesnt think" I have that because I have pains and nerve type things which are not associated with ALS. However, he did say sometimes its hard to tell early on in the disease. Then he went on to say he didnt think it was MS as usually the issues with MS last in one area for at least a few days non stop vs skipping around my body. He also said usually there is not pain with MS but I know a good amount about MS and knwo pain IS associated.

My joints are cracking non stop still and some areas are popping in and out of the socket-pelvis, shoulders---the neuro heard it today and had no explanation. Is this muscle wasting?



Basically he said we just have to wait and see what changes.

So now I am back to being concerned that I could have ALS. I do not have weakness that I notice. The only new things bothering me is the vibrating/buzzing feeling in my foot, muscle cramps, and also my right pointer finger went numb for 2 days.

He said my cord compression was not bad enough to cause this either.

Feedback greatly appreciated.
I have widespread pains aswell, along with some cold spots ( like there are icecubes between my fingers ) and widespread twitching.
I have had a clean MRI of my head, but no MRI of the spinal cord. The anxiety is tempting me to get one.. should i?

Ofcourse MS can cause pain.. its a autoimmune disease that attacks the nerves ( both sensory and motor ) so you will experience numbness, cold/hot spots, pains etc. Most neuros do not know this, because their knowledge is outdated. Over the past few years, MS has been well known to cause extreme pain and sensory problems. In a very few cases, MS does not show up as lesions and a spinal tap is needed to get this fish out of the water. However, there is another condition called peripheral neuropathy which can also cause pain and twitches; http://www.mayoclinic.com/health/per...CTION=symptoms


Cracking or popping joints are not associated with ALS. Not at all. Allot of people with BFS and fibromyalgia have it; even some healthy people get cracking joints.. some more then others.
 
Old 11-07-2008, 01:48 AM #3 (permalink)
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I know MS can cause pain which is what made me think the dr had no clue what he was talking about!

I am concerned about ALS because my twitching is ALL over, everday and hit several times an hour--even wakes me in my sleep

Have you had an EMG?

What are your drs tell you?

I have also learned w MS a clean MRI does not mean its not MS and I am worried that a clean EMG could mean the same w ALS. It scares me that I have this extreme joint cracking, bones are popping out of the socket too, as well as the twitching and now muscle pulls. I just dont know what to think

I am a 33 yr old female and just feel hopeless
 
Old 11-07-2008, 02:03 AM #4 (permalink)
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Originally Posted by k2626 View Post
I know MS can cause pain which is what made me think the dr had no clue what he was talking about!

I am concerned about ALS because my twitching is ALL over, everday and hit several times an hour--even wakes me in my sleep

Have you had an EMG?

What are your drs tell you?

I have also learned w MS a clean MRI does not mean its not MS and I am worried that a clean EMG could mean the same w ALS. It scares me that I have this extreme joint cracking, bones are popping out of the socket too, as well as the twitching and now muscle pulls. I just dont know what to think

I am a 33 yr old female and just feel hopeless
First, if you have widespread twitching but a clean EMG, then you do not have ALS.
ALS = both upper and lower motor neuron damage. Fasciculations can be a sign of lower motor neuron damage. However, lower motor neuron damage will ALWAYS show up on the EMG. That being said, something else is causing these twitches and its is most likely the benign fasciculation syndrome. Some people with fibromyalgia also have widespread twitching. Sometimes, fasciculations do appear on the EMG. But if there are no abnormalities found ( Clean twitches with no denervation ) then it really is benign.

I never had a EMG. My neurologist did some test and found no abnormalities. He said that ALS has nothing to do with pain and the fasciculations usually appear after weakness. In some of the cases, fasciculations precede weakness but these fasciculations are not all over the body.. and after my follow up to get the MRI results, i still had no weakness which confirmed his diagnosis of ' something most likely benign' . Most neurologists never heard of BFS, apart from the fact that its benign..

When BFS started for me in august, i noticed the intense joint cracking aswell. I guess this goes hand in hand with the muscle twitches.

The last thing you can do is getting a spinal tap to rule MS out. If it all comes out clean then you just have to be happy; no ALS, no MS, and no abnormalities found on the MRI ( so no tumor in the spinal cord pressing on the nerves or something like that )
 
Old 11-07-2008, 02:11 AM #5 (permalink)
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Thanks for your response> I guess I thought one had to have the twitching at the moment of the EMG-I (of course) during the test had no twitching. I also was fearful when the new neuro today said that sometimes it doesnt show up right away on an EMG.

The thing with me is my cracking is not normal.I am SO tired of drs saying "joint cracking" is normal. I know in some cases it is. However, I never had cracks like this until about a wk after the onset of my migratory pains. For example I counted 15 cracks in 10 min, they are loud hard cracks, other times one joint will crack 5 time within a minute, at night when I roll over all you hear are my shoulders. Now my joints are coming out of the socket, mainly the hips, pelvic and knees--the neuro today was somewhat shocked at this...

What do you feel the reason is for your symptoms? Did most just onset all at once? Most of mine did aside from the twithing which was months after the pains and the muscle pulls/cramps which just started happening.

I do not have fibro as I dont have the tender spots. Before my dr scared me today I have been thinking MS, Lyme or some sort of connective tissue disorder (though labs clear)

I think I am going to request an LP as my next step
 
Old 11-07-2008, 02:21 AM #6 (permalink)
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Thanks for your response> I guess I thought one had to have the twitching at the moment of the EMG-I (of course) during the test had no twitching. I also was fearful when the new neuro today said that sometimes it doesnt show up right away on an EMG.

The thing with me is my cracking is not normal.I am SO tired of drs saying "joint cracking" is normal. I know in some cases it is. However, I never had cracks like this until about a wk after the onset of my migratory pains. For example I counted 15 cracks in 10 min, they are loud hard cracks, other times one joint will crack 5 time within a minute, at night when I roll over all you hear are my shoulders. Now my joints are coming out of the socket, mainly the hips, pelvic and knees--the neuro today was somewhat shocked at this...

What do you feel the reason is for your symptoms? Did most just onset all at once? Most of mine did aside from the twithing which was months after the pains and the muscle pulls/cramps which just started happening.

I do not have fibro as I dont have the tender spots. Before my dr scared me today I have been thinking MS, Lyme or some sort of connective tissue disorder (though labs clear)

I think I am going to request an LP as my next step
During the clinical exam, i had no twitches aswell. These little annoying twitchers are really playing tricks on us

If you have fasciculations and if it really is ALS, then it will show up on the EMG. The only thing that will not show up on the EMG is upper motor neuron damage ( bulbar ). Do not be afraid you have that one now and start looking at your tongue. Anxiety can mimic allot of its symptoms and really play tricks with you.

I do not know the reason, but i suspect something; I'm an extreme hypochondriac. Prior to my twitching, i had some intense back pain and muscle spasm between my ribs. During this time i was also coughing for about 6 weeks.. i went to the doc's office about 5 times in a month because i thought it was lung cancer or something. The twitching started right after.. so i guess the cause of my twitching is stress/ anxiety. For some people it is a viral infection.. for others it is unknown.

MS can cause muscle twitches.. but usually not fine little twitches that we experience.. more like electric body jolt twitches that suddenly moves a limb. But these kind of twitches can also be found in BFS, or right before you fall asleep

I have been tested for lyme aswell; lyme can mimic allot of neurological disorders and it sometimes takes years before these symptoms start to take off after you got bitten. These include pains, pins and needles, sometimes twitches, headaches etc.
 
Old 11-07-2008, 02:27 AM #7 (permalink)
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So if one does not have the twitching during the EMG then that can STILL detect ALS?

I have twitching in my upper body too, eye, shoulder, etc.. So is that known as "upper neuron"?

Do you have fascilations nonstop everyday? Can you see your twitches? I see some, some I dont. I can have one little twitch or tons of little tiny ones that feel like its bugs under my skin, or hard heavy ones (these wake me up)

I have tried magnesium and it does not help.

I thought hmm is this stress causing all of this? However, stress would not cause my joint issue and I doubt these heavy pains that I have-literally feels like a toothace. I get nerve pains too.

Have you tried any meds?
 
Old 11-07-2008, 02:33 AM #8 (permalink)
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So if one does not have the twitching during the EMG then that can STILL detect ALS?

I have twitching in my upper body too, eye, shoulder, etc.. So is that known as "upper neuron"?

Do you have fascilations nonstop everyday? Can you see your twitches? I see some, some I dont. I can have one little twitch or tons of little tiny ones that feel like its bugs under my skin, or hard heavy ones (these wake me up)

I have tried magnesium and it does not help.

I thought hmm is this stress causing all of this? However, stress would not cause my joint issue and I doubt these heavy pains that I have-literally feels like a toothace. I get nerve pains too.

Have you tried any meds?
ALS fasciculations are caused by denervation of the motor neurons. You dont have to twitch when you have a EMG. The EMG will show up denervation and lots of dirtyness.. and fasciculations if you have them. Again, if you have BFS then sometimes they will show up.. but with no denervation then you dont have als.

The EMG does not need to be in the affected limb where you have twitches at that very moment to see ALS. ALS is a body wide disease.. it WILL show up on the EMG.

I have good and bad days. On good days, the twitches are barely noticeable. On bad days, i get lots of 'hits and runners' that seem to hit one place then go to the next. I just had a hotspot on my hand for a couple of days that even let me drop a cup of tea because i thought a bug was crawling on my hand

Sometimes, the twitching gets replaced by hit and run pain sensations.. At this very moment, i think the twitching is about 40%, and the pain sensations the other 60%.

I tried vitamin pills; no effect.
I took some benzo's ( temazepam, oxazepam ) when BFS first took off because i was in allot of panic. But the doctors are careful in giving these pills because they are addictive and are not that good for your body. I dont like using them either, because i've read that after a few weeks you have to stop taking them for a while and its like going on cold turkey; you will notice lots of twitching because you were mentally numb all the time when you took them and did not noticed the twitching that much.

When i have a very bad night, i take a good conversation with my old friend jack daniels. It does not stop the twitching; the benzo's dont stop the twitching aswell.. but it makes you numb so you wont notice them. Becareful with alcohol though.. its just as addictive like the benzo's
 
Old 11-07-2008, 02:42 AM #9 (permalink)
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You sure know alot about this and I thank you for educating me. I did read that fascilations are what you can see under the skin and twitches you cannot. I see my muscles when they get going at times, so that would be fascilations?

See, I twitch/ have fascilations ALL DAY long and while I sleep. There is rarely more than an hr that goes by where I am not twitching somewhere.

Do your pains stay localized, or hit one area for a very short period and jump to the next spot

Sounds like we have some similiar stuff going on aside from my joint issues. Oh my left foot vibrates on and off too, and tingles sometimes...
 
Old 11-07-2008, 02:46 AM #10 (permalink)
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You sure know alot about this and I thank you for educating me. I did read that fascilations are what you can see under the skin and twitches you cannot. I see my muscles when they get going at times, so that would be fascilations?

See, I twitch/ have fascilations ALL DAY long and while I sleep. There is rarely more than an hr that goes by where I am not twitching somewhere.

Do your pains stay localized, or hit one area for a very short period and jump to the next spot

Sounds like we have some similiar stuff going on aside from my joint issues. Oh my left foot vibrates on and off too, and tingles sometimes...
My pains are just like the twitches. Sometimes they stay on the spot for a couple of minutes and then take off to the next.

Do not be afraid when you no longer can see the twitches. Muscles deep in your limbs can twitch too, and it will feel like internal vibrating twitches. They are also very common.

I got all my information from aboutbfs.com and lots of reading.. And the messageboard is a good place to ask allot of questions about your symptoms and see if other people with BFS experience them aswell. Back to sleep now, bye
 
Old 11-07-2008, 02:51 AM #11 (permalink)
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Actually I am afraid when I can see them! I read that with ALS one usually see's the twitching. In fact, two drs have asked me "are your twitches visable". I often have those deep ones too, you described it well.....like little vibrates that go very quick.

The vibrating in my foot is not a twitch though, its like there is a cell phone on it. That comes and goes, or sometimes it feels springy/tingly like when your foot falls asleep

My pains are fleeting too--sometimes last a few seconds, other times pulsates for a few hours then moves on. Right now I have been having this on and off pain at the top of my left ankle. They feel like tootaches. If I press or touch the areas at times it hurts

Wonder if we have the same thing going on...

I assume you have had loads of blood work?
 
Old 11-07-2008, 02:58 AM #12 (permalink)
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Actually I am afraid when I can see them! I read that with ALS one usually see's the twitching. In fact, two drs have asked me "are your twitches visable". I often have those deep ones too, you described it well.....like little vibrates that go very quick.

The vibrating in my foot is not a twitch though, its like there is a cell phone on it. That comes and goes, or sometimes it feels springy/tingly like when your foot falls asleep

My pains are fleeting too--sometimes last a few seconds, other times pulsates for a few hours then moves on. Right now I have been having this on and off pain at the top of my left ankle. They feel like tootaches. If I press or touch the areas at times it hurts

Wonder if we have the same thing going on...

I assume you have had loads of blood work?
Yes, lots of blood tests.. no abnormalities so far ( by that i mean calcium levels, b12, and other stuff that can cause twitches)

ALS twitches are usually tiny little ripples that you can barely see. Most people never notice them and notice the obvious weakness first.. because ALS twitches are caused by dying muscles because they no longer get instructions from the brain and sort of act on their own untill they vanish. Some ALS patients notice them - or cramping.. not 'perceived cramps ' like in BFS, but real cramps where your muscles get really tight and stay in that mode for a period of time. However, the fasciculations that they notice are usually in one spot and not spread all over your body. Some people with BFS have so called hot spots; where twitches will stay on one spot and twitch 24/7 for weeks, or even months. You have been twitching for 11 months now and no weakness, a clean EMG so no ALS. What else could you ask? anxiety causes 50% of the BFS symptoms.. not physical symptoms, but with the anxiety you amplify the twitches. With the anxiety, you will also start doing silly strenght tests and you will have even more pain and fatigue ( or perceived weakness ). Its a vicious cycle of 'mental destruction'

Pins and needles are also very common in BFS. They are not common in ALS because ALS does not attack sensory neurons ( Touch, pain / heat information sent to your brain )
 
Old 11-07-2008, 03:06 AM #13 (permalink)
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Have you been tested for auto immune disorders, your thyroid and lyme?

Odd, my dr said with ALS the twitching is all over the body? Actually two drs said that.The dr today did say there are no sensory things with it as you mentioned, ie pains, etc.. Still I cant help but worry.

I prob see about 30% of of my twitches the others are the little deep ones that feels liek there are bugs moving around in my muscles

My other dr did say that usually with ALS the twitching is in later stages after atrophy, but in some cases it can be the first symptom

I have not noticed any weakness, I lift the same weights at the gym with no bigger struggle so I assume that is a good sign?

I wonder if stress could cause the tendens to get stiff hence cause joint cracking. I am grasping at straws. The best bet would if it were all stress! A lot of this started after my dad was diagnosed w end stage PC -he lived 2.5 months after diagnosed. However, I was having some of the pains before, like burning/nerve feelings and the eye pressure pain that I get.
 
Old 11-07-2008, 03:12 AM #14 (permalink)
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Have you been tested for auto immune disorders, your thyroid and lyme?

Odd, my dr said with ALS the twitching is all over the body? Actually two drs said that.The dr today did say there are no sensory things with it as you mentioned, ie pains, etc.. Still I cant help but worry.

I prob see about 30% of of my twitches the others are the little deep ones that feels liek there are bugs moving around in my muscles

My other dr did say that usually with ALS the twitching is in later stages after atrophy, but in some cases it can be the first symptom

I have not noticed any weakness, I lift the same weights at the gym with no bigger struggle so I assume that is a good sign?

I wonder if stress could cause the tendens to get stiff hence cause joint cracking. I am grasping at straws. The best bet would if it were all stress! A lot of this started after my dad was diagnosed w end stage PC -he lived 2.5 months after diagnosed. However, I was having some of the pains before, like burning/nerve feelings and the eye pressure pain that I get.
Body wide twitching in ALS is during a very late stage of the disease. You will have major issues by then for sure.

I have been tested for lyme. Getting results next week.. i have been bitten by a tick when i was 12.. never had the well known red spot. Sometimes it takes years for neurological symptoms to show up on the surface. I get pains in my eyes sometimes aswell, i have no idea what these pain sensations are or if they are related to BFS. Thats why im doubting if i should go for another MRI of my spinal cord to rule out tumors and MS.

BFS is not related to ALS. You do not have a higher risk of getting ALS; your like any other person. BFS is a chronic disorder while ALS is another disease.. Even someone with MS can have ALS; although never reported i think.. but when it comes to diseases, no one gets the lucky card. We should enjoy life until then
 
Old 11-07-2008, 03:20 AM #15 (permalink)
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Did you get tested through a standard lab for lyme or a specialized lyme lab. I know a good amount about lyme these days. If you test through standard it will likely come back neg. Even if you test through a specialized lab it may not be accurate. So often one needs to go to a LLMD, they will test for co infections and will rule out all other things before diagnoseding lyme. I tested pos for one lyme band and in the middle on two. The CDC changed the testing standards..it use to be if you tested pos for one then you were positive, now its two. So I saw a LLMD who has tested me for co infections. I will find out in two wks. I too was bit about 15 yrs ago in Ct (very high lyme) I have read sometimes with chronic lyme it can take YRS for some of the symptoms to show (usually neuro) and is often set off by stress or illness. Anyway about a month before this I did have a 5 bumps on my stomach that looked like bites, I went to the doc, he gave me meds (not knowing what it was but being careful) two days later I had a bad cold then a month later all of this. Not sure if its connected.

With MS twitching usually would not onset by twitching all over, its usually a localized spot.

I have been getting bad muscle cramps the past 2 wks. Its like my muscle ( usually arm, or thigh) will lock up then it will release...its pretty painful. Is this the type of muscle cramp with ALS?
 
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