Muscle fasciculations

Gabes-Apg · Post by **Gabes-Apg** » Wed Dec 16, 2015 11:43 am

The problem is that when a patient doesn't happen to fit the official diagnostic criteria for known diseases (IOW the difficult cases), most physicians don't know what to do with them. Doctors are flummoxed by the limitations of the system. In essence, the clinician has a choice of "diagnosing" such a patient with "IBS", or declaring that "It's all in the patient's head".

ohh yes, pre MC Dx, one of the top immunologists in a large capital city spent weeks reviewing me, various tests etc and his conclusion for my casemix of symptoms was that I must have had contact with Bat Urine in a cave in Papua New Guinea. here is some Doxycycline we cant do anything else for you... (I had NOT had contact with Bat Urine in PNG)

A colonscopy with biopsies would have bought accurate Dx

BearcatRx · Post by **BearcatRx** » Wed Dec 16, 2015 11:47 am

Gabes-Apg wrote:
The problem is that when a patient doesn't happen to fit the official diagnostic criteria for known diseases (IOW the difficult cases), most physicians don't know what to do with them. Doctors are flummoxed by the limitations of the system. In essence, the clinician has a choice of "diagnosing" such a patient with "IBS", or declaring that "It's all in the patient's head".
ohh yes, pre MC Dx, one of the top immunologists in a large capital city spent weeks reviewing me, various tests etc and his conclusion for my casemix of symptoms was that I must have had contact with Bat Urine in a cave in Papua New Guinea. here is some Doxycycline we cant do anything else for you... (I had NOT had contact with Bat Urine in PNG)

A colonscopy with biopsies would have bought accurate Dx

BearcatRx · Post by **BearcatRx** » Wed Dec 16, 2015 11:55 am

I will say that all of the knowledge I've gained since being diagnosed with MC/LC has been immense. I am able to pass along a lot of information to people whom I see filling prescriptions for digestive problems. Having said that, I'm going to give these supplements time to start kicking in. Hopefully within a few months I'll have some better news for you all.

Gabes-Apg · Post by **Gabes-Apg** » Wed Dec 16, 2015 11:55 am

Synergistic nutrients for B12

Vit A, B1, B2, B5, B6, C, E biotin, calcium, cobalt, copper, folate, iron, methionine, N-acetyl cysteine, omega3 fatty acids, phosphate, selenium

its not just about levels - it is making sure the cell has the right combo of ingredients to USE the B12 etc

Gabes-Apg · Post by **Gabes-Apg** » Wed Dec 16, 2015 12:01 pm

Further from the nutrient bible (text book used by nutritionists/dieticians/naturopaths etc)

Symptom - and the nutrients needed

Muscle Cramps; E Calcium, magnesium potassium, sodium, B5, biotin
muscle weakness; D, isoleucine, leucine, valine, taurine, potassium, magnesium, CoQ10, E, B1, B3, creatine
muscle tremor; magnesium
nerve exhaustion; B1

Post by **tex** » Wed Dec 16, 2015 12:02 pm

Bearcat,

I hope your recovery goes smoothly. We're all pulling for you.

Tex

BearcatRx · Post by **BearcatRx** » Wed Dec 16, 2015 12:07 pm

tex wrote:Bearcat,

I hope your recovery goes smoothly. We're all pulling for you.

Tex

It's definitely a struggle. Just getting the GI issues resolved and on a good diet that works... now the muscle issues! If I learned anything from the Marine Corps it's that you never give up no matter how badly the odds are stacked against you. Except this time the battle is internal!

Gabes-Apg · Post by **Gabes-Apg** » Wed Dec 16, 2015 12:08 pm

internal, unpredictable, vulnerable, aggressive at times....

brandy · Post by **brandy** » Wed Dec 16, 2015 1:50 pm

Hi Bearcat,

Thank you for serving our country.

I am able to pass along a lot of information to people whom I see filling prescriptions for digestive problems.

This is huge for you to give back. Looking back I would have given anything for someone to tell me to avoid dairy and eat an overcooked simplistic diet early on.

I did not have muscle issues but had other issues of brain function and fatigue that took me months to get to the bottom of. Do not give up. You will get there.

Brandy

Patricia · Post by **Patricia** » Thu Dec 17, 2015 5:06 pm

Hi Bearcat,

I am another one with muscle fasciculations. I was first diagnosed with MC in September 2014. In March 2015 I started noticing weird sensations in my right leg (like the feeling of a sock on my foot, tingling, slight pain in my thigh), I also noticed some trembling in my hands. At that time, I began taking the equivalent of Metanx. I switched PCPs in fall of this year as my former PCP was getting quite condescending and did not know what to do about all the various symptoms in my body that did not make sense according to her. The caves in Papua New Guinea did not cross her mind

My new PCP conducted tons of blood tests and also sent me for an EMG and nerve conduction study of the right leg this fall. Believe it or not, two days before my EMG/nerve conduction study, I was working at the computer and my left calf started twitching. It only twitched once or twice or I would have mentioned it to the physician who conducted the tests of the right leg. He told me that both the EMG and the nerve conduction study were absolutely normal. In the meantime, the twitching is quite frequent. Sometimes an eyelid, very often a muscle in either leg, thigh, calf, ankle, even the bottom of the feet, or the torso. There are days when it happens very frequently, and days where it doesn't happen at all. I was freaked out in the beginning, especially when a letter from the ALS association arrived, starting with "have you ever had muscle twitching...?"
There is a great website about muscle fasciculations: www.aboutbfs.com. The topic "why you don't have ALS" is very informative:
http://www.aboutbfs.com/forums/viewtopi ... =3&t=11435

So is the one written by a physician:
http://www.aboutbfs.com/forums/viewtopi ... =3&t=21784
Basically, fasciculations are the least noticeable features for someone with a motor neuron disease, there are many much more severe symptoms that show up first.
Also, he recommended certain blood tests:
CBC, electrolytes (including Mg, Ca, PO4), TSH, B12, Folate, Cr, ALT, cholesterol (good to know anyway) +/- TTG/IgA (celiac disease) ONLY. If all clear, stop investigating and start ‘dealing’ with this annoying (but not pathological) disorder.

Since I had just had tons of blood tests and everything came back normal except for the vitamin D where I am still deficient despite taking it daily (I upped the dose since), I decided not to further investigate the fasciculations. The tremors have improved significantly. There were also days when I did not have any symptoms in my right leg. But, as Tex mentioned, if I discontinue the active vitamin B6/B9/B12 for a few weeks, I start having symptoms again. And yes, my B12 blood test was completely fine. But I don't think it truly represents the B12 in the cells.

Overall, I feel a lot better than a year ago, thanks to the great and wise advice received by all the wonderful people on this forum. I have no doubt that "all these weird symptoms" are associated with MC, and my hope is, that with lots more healing and time, they will vanish. It seems like one weird symptom goes away and another one turns up. But I try not to get too stressed out about it anymore.

Patricia

BearcatRx · Post by **BearcatRx** » Thu Dec 17, 2015 10:28 pm

Patricia wrote:Hi Bearcat,

I am another one with muscle fasciculations. I was first diagnosed with MC in September 2014. In March 2015 I started noticing weird sensations in my right leg (like the feeling of a sock on my foot, tingling, slight pain in my thigh), I also noticed some trembling in my hands. At that time, I began taking the equivalent of Metanx. I switched PCPs in fall of this year as my former PCP was getting quite condescending and did not know what to do about all the various symptoms in my body that did not make sense according to her. The caves in Papua New Guinea did not cross her mind
My new PCP conducted tons of blood tests and also sent me for an EMG and nerve conduction study of the right leg this fall. Believe it or not, two days before my EMG/nerve conduction study, I was working at the computer and my left calf started twitching. It only twitched once or twice or I would have mentioned it to the physician who conducted the tests of the right leg. He told me that both the EMG and the nerve conduction study were absolutely normal. In the meantime, the twitching is quite frequent. Sometimes an eyelid, very often a muscle in either leg, thigh, calf, ankle, even the bottom of the feet, or the torso. There are days when it happens very frequently, and days where it doesn't happen at all. I was freaked out in the beginning, especially when a letter from the ALS association arrived, starting with "have you ever had muscle twitching...?"
There is a great website about muscle fasciculations: www.aboutbfs.com. The topic "why you don't have ALS" is very informative:
http://www.aboutbfs.com/forums/viewtopi ... =3&t=11435

So is the one written by a physician:
http://www.aboutbfs.com/forums/viewtopi ... =3&t=21784
Basically, fasciculations are the least noticeable features for someone with a motor neuron disease, there are many much more severe symptoms that show up first.
Also, he recommended certain blood tests:
CBC, electrolytes (including Mg, Ca, PO4), TSH, B12, Folate, Cr, ALT, cholesterol (good to know anyway) +/- TTG/IgA (celiac disease) ONLY. If all clear, stop investigating and start ‘dealing’ with this annoying (but not pathological) disorder.

Since I had just had tons of blood tests and everything came back normal except for the vitamin D where I am still deficient despite taking it daily (I upped the dose since), I decided not to further investigate the fasciculations. The tremors have improved significantly. There were also days when I did not have any symptoms in my right leg. But, as Tex mentioned, if I discontinue the active vitamin B6/B9/B12 for a few weeks, I start having symptoms again. And yes, my B12 blood test was completely fine. But I don't think it truly represents the B12 in the cells.

Overall, I feel a lot better than a year ago, thanks to the great and wise advice received by all the wonderful people on this forum. I have no doubt that "all these weird symptoms" are associated with MC, and my hope is, that with lots more healing and time, they will vanish. It seems like one weird symptom goes away and another one turns up. But I try not to get too stressed out about it anymore.

Patricia

I think the most scary part about having symptoms such as muscle twitching and what not is because as soon as you type in those symptoms, the first thing you see is ALS, MS, Parkinson's disease and other rare conditions. I've been examined by a neurologist who I went to with tremors. He said it was a combination between benign essential tremor and physiologic tremor. Based off my physical exam he didn't think I had any sort of neurological disease. Then the muscle fasciculations began and my left middle finger twitches every now and then. So a quick internet search explains how Michael J Fox began to experience symptoms of Parkinson's... a simple twitch in a finger on his left hand. All of this is quite scary and while I don't want to be a hypochondriac, one cannot rule out anything. Though based off my Dx of LC, these vitamin deficiencies seem a much greater probability than something as rare as Parkinson's or ALS especially considering my age. It is definitely scary though. I believe it may be a combination of that and some ulnar nerve issues I think could be probable based off some numbness/pain in my elbow since I spend a LOT of time contorting my elbow in a way that could irritate that specific nerve.