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deniseannette

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I just thought that I would give a little update on how I'm doing. About a week ago I had an EMG test done on my right calf muscle and left arm. I got the news today. The neurologist did not send the results to my primary doctor but he sent an overall report. I wasn't able to get a print out, but the doctor stated that the overall EMG and NVC was "unremarkable".

I felt very relieved until the doctor asked me to describe my symptoms. I told her about my fasiculations (which have now made its way to my tongue, lips and hands) tingling, cramping, stiffness, pressure headaches. I also mentioned the virus I had in April. It wasn't until I mentioned a slight atrophy in my right calf that she got concerned. I showed it to her and she looked worried. She measured boths calves. Come to find out, one calf is bigger than the other! She said that my reflexes seemed fine, but the atrophy was concerning. I got some blood work done to see if I have elevated muscle emyzmes in my blood. If I do, she said that she would refer me to a neuromuscular doctor. They also took a urine sample and checked for my magnesium levels

Right now, I have a whole array of emotions. I'm freaked out. Today I woke up to crazy fasiculations in my left arm. It kinda felt like popcorn sounds (does that make sense?).I didn't really notice it until i stayed really still. I'm hoping that what i have a magnesium defiency. I did some research. Some, if not all of my symptoms do point towards it. I bought magnesium oxide a couple weeks ago. I didn't see too much of a difference which was very disconcerting. So I went to the herbal store today and pick up some stuff called "Natural Calm" Its magnesium citrate in powder form. It disolves better apparently. So, I'm going to try that. The last time I got check for my magnesium levels was in mid April, when I first became ill. I was at the emergency room and they tested it and said it was fine. So, I just dont know. Yesterday I took 250 mg of magnesium oxide and felt a bit ill and sleepy. I'm starting to have doubts that it is the magnesium but its worth the try.


At this moment I can't eat and can't stop crying. I have to wait til Monday to get the EMG results and report. On Tuesday I will get the blood test results. All I can do is pray.

Here is a picture of my calf. I have gross calves I know!

http://i544.photobucket.com/albums/hh359/vanityandlove/IMG_0426.jpg

It is at the top area. I'm not sure if it is muscle atrophy. But the fact that the doctor said that she noticed it scares me. She spent years in the neurology department and has done EMG test. I'm terrified.
 

Alyoop

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I presume it was your atrophied calf that you had the EMG on, if so ,the fact that it is normal points away from ALS. It would have showed up on the test. Sometimes doctors should keep there mouths firmly closed. It could be all sorts of things, just wait till you have been referred to a neurologist before you let your imagination get away from you.
If you went to your primary doctor, then they tend to be very bad at anything to do with neurology.

My legs are not the same size, no ones are. If you have no weakness in the calf and normal reflexes then that's another reason to be calm. The more you stress, the more you will twitch, everyones story on this part of the forum is the same. Widespread twitching is another good sign. Chin up and be patient.
Aly

Oh and your calf photo doesn't look too bad.
 

trfogey

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Oh, good heavens. An unremarkable EMG/NCV means that there are no findings on the test that are abnormal enough to be remarked upon -- therefore, the test is unremarkable, as in boringly normal, with nothing that needs further attention. ALS is off the table, so your twitches are probably BFS and will get worse as you stress out, so quit feeling sorry for yourself and go out and live your life instead of frittering it away on the freaking Internet.

Oh, and stay away from the herbal store and quit dosing yourself with those supplements. They only work if you have the condition that they treat. You don't know what you've got (other than it's not ALS), so leave the supplements alone until a doctor tells you to use them, just in case they do interfere with any tests your doctor needs to run on you or cause side effects of their own.
 

wright

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Unremarkable / Clean / Normal / etc., etc. EMG = no ALS. End of story. You were even needled in the leg that has supposed muscle atrophy, which I'm NOT seeing at all. I have been lifting weights for well over 20 years and my muscles aren't symmetrical. It is incredibly rare to have symmetrical body parts.

It sounds like your current GP is an alarmist . . . OR . . . you misinterpreted what he/she said and you simply didn't listen to what he/she said. My guess is that you're not really listening. Why? Because you haven't listened to any of us on here.

Relax. You had a virus that caused your muscles to twitch a bit more (they were already twitching, I assure you) and then your anxiety and "internet research" (leading to more anxiety) is only making things worse. Again . . . RELAX!
 
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patricia1

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Try vitamin B complex May help benig twithing .I see a small indenation in your calf but I wouldn't call it muscle wasting as most people calf are slightly different size
You need to get blood test and brain mri and neurologist to review them before you call it ALS
 

Robynnblue

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She doesnt need to call anything about her situation ALS. To the OP, you my dear have BFS, nothing more, nothing less. Oh and some chronic, heavy duty anxiety. Stay away from the "Natural Calm", I tried this as well last year, trying to calm the twitches and myself at the same time and that stuff did nothing for me or the twitches and severely upset my stomach and bowel habits (to put it as mildly as I can), and also did nothing for my anxiety at all. Chamomile tea did help with the anxiety to some extent though, so you may want to look into that. Anything that you can find or do to decrees the anxiety, will lower your BFS symptoms to a much more manageable level, it will even put a stop to many of the symptoms.

If that calf of yours was truly atrophying, there is no way that EMG would have been clean, and I find it hard to believe your doctor would think or tell you otherwise.

You really, really need to stay off of here, and stop reading stuff that sets your anxiety off, this will only give fuel for your BFS symptoms to worsen and make you absolutely miserable.

Please take care and go check out the AboutBFS.com forum. You would fit in over there much better and be able to get the support you need to deal with your BFS symptoms.


Robynn:D
 

deniseannette

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Well, first thanks so much for all of your responses.

@ Alyoop
I was ready to walk out the door when the doc gave me the good news about my EMG test. It wasn't until she looked at my calf that I started to freak again. She DEFINTELY should have kept her mouth shut. It scared me even more because she used to work in the neurology department. She now works at different walk in clinics. But you're absolutely right. My neurology appoinment is next Saturday.

@Trfogey
I do have weakness as well as stiffness in my right calf and left arm. I'm sure the headaches i get are probably not related to ALS right? I get sharp pains in my head as well as tingling of my face and head. I was told by my doctor to take magnesium. Which has not worked so far. The twitching came before the weakness..I would go out a live my life but I feel sick as a dog. I barely have any energy these days.

@Wright
I definitely respect your opinion and think you're extremely knowledgable but dont tell me what I am and am not doing. I was listening to my doctor loud and clear. It wasn't until the doctors saw the dent in my calf that SHE started to worry which made ME worry naturally. I'm just wondering what kind of a virus would cause such a horrible side effect. I've never been this sick in my whole life.

I just bought some Vitamin B complex Patricia. I'm hoping they will help my immune system. So far nothing yet. But its only been two days. I've bought so many vitamins. I hope it wasn't a waste of money. I'm starting to think it was. I've been asking for a MRI for the past 2 months. Every doctor said I didn't need one. This doctor (who mentioned neuromuscular disease!) said she would schedule a MRI if my muscle isn't wasting in my blood (liver emyzes?). I might possibly have MS.

It might be the anxiety that is causing it Robynn. I'm not sure. I've been trying to stay calm but the twitching and tingling is still there. You were right about the Natural Calm. I don't know if I should buy another form of magnnesium. I don't want to waste anymore money. I will talk to you on BFS


My symptoms as of now.

New places twitching (tongue, inside of nose)
Widespread twitching (arms, butt, legs)
Cramping/stiffness of right calf (its been a month, hasn't gotta any better)
Shoulder jerking and twitching
Tingling sensation of head and scalp, forehead
Weakness of left arm/hand (I had an EMG on this limp however
Reoccuring lymph nodes on neck
Fingers of left hand shake. Can't control them
hand jerking
Left hand cramping.
Hiccuping


I feel like a fool for coming back on here, but I thought I would give an update. I hope if it's okay if i come back here if my symptoms continue to progress. Each person's symptoms are different. I know that something is definitely wrong. I would let it be and relax if I was getting better. Even if I was slowly getting better, but I'm not. Yes, this started with a virus. Its slowly getting worse.
Here is a timeline.

Late March:
- Pain in ankles on waking ( overlooked, I am overweight)
- Off and on vertigo
- Smell strange odors, others couldn't smell

Early April:
- Weird sensation in both legs
- Tingling, kind of numb like feeling in legs
- Stomach pains
- Weight loss
- Constipation
- Sharp pain in buttock
- Vertigo continues

Mid April:
- Came down with virus
- No appetite
- Severe abdominal pain
- GERD - started taking nexium'/ Zantex (little relief)
- Headaches
- Legs shaking/quivering
- Ultasound (normal severely constipated)
- Diagnosis- severe pain due to constipation. Prescribed meds--felt better for 24 hrs
- Also, very dehydrated.
- twitching in legs and shoulders blades only. (thought it was due to virus)
- Internal tremors upon waking
- Wake up out of breath


End of April:
-Cramping of right calf in morning
- Wake up out of breath
-Twitching of legs, shoulder blades continue
-Legs shaking constantly (especially upon standing)
- Pressure headaches
- Daytime sleepiness
- Chest xray (lungs slightly compressed due to "weight")
- Lung capacity test (okay..doc said due to weight)

Early/mid May:
-Internal tremors continue
-Pressure of head, nose, sinus area
-Twitching continued (no weakness yet however)
-Back pain
- Felt a loss of control of right leg for awile
- Xray showed C3-C5 forminal stenosis
- L5-S1 Degenerative Disc Disease.
- Electrical zaps in head- felt like the left side of head was splitting for the right side.
- Involuntary musle jerking ( right leg)
- Went to Sunnybrook ER for second opinion (according to them No forminal stenosis of cervical spine. Early sign of Disc degeneration in lumbar spine. I'm pretty sure is due to weight.
- Electric shock type shock through right leg. Had to dragged my leg around 1 night. That went away. Happened twice.
- Pulsating type feeling up right leg to knee.


Late May:
-Frequent headaches( from moderate to severe to cluster to complex) you name it, I had it.
-Internal tremors continue
- Feeling like a can't breath.
- Sometimes I can't breath laying on back or side.
- Stiffness in right calf
- CT scan of brain normal
- Twitching now spreads to stomach and back
- numbness of left arm (went away)
-Off balanced
- Fingers in left hand shaking
-Heart palpatations


Early June:
-Muscle aching
-Feeling unable to breathe
-Twitching continues (of course)
- Reoccuing palpable lymph node on back of neck
- Spasms and charlie horses on right leg in the morning
- Small twitching I can't feel seen on right calf
- Tingling of face (mainly on left side)
- Feeling off balanced
- numbness of left arm (went away)
- Dizziness

Mid June to Now:
- EMG said to be normal (have not recieved report)
- Twitching now on almost every part of body (arms, legs, calf, shoulder blades, tongue, face, kneecaps, lips,butt..even up my nose.
- Cramp of hands
- Pain in left hand
- Slighty atrophy in hand (could be in my head though)
- Dizzness. especially when sitting down
- Tingling of scalp and face. (very debiliating and disconcerting)
- Loss of appetite.
- Dirreaha (you really didn't need to know that I'm sorry) probably due to Natural Calm and that awesome time of the month!
- Swollen lymph node right side of neck.
- Fingers in left hand continue to shake.
- Feeling a loss of control in entire left arm
- slight pain in entire left arm.


I woke up this morning with my left hand curled up. Waited for blood to come to them. I want to believe that I slept on it wrong. I'm really not sure. I feel weakness in my left arms as of now. I have a hard time holding my cellphone in my left hand. I think I might of had the EMG too early. A doctor that I went to prior to having the EMG test done, said that it was to early in the game, to have an EMG done. That its usually one of the last things you do. Now weakness has started to set in so I'm thinking maybe I should get it done again?

I'm not really sure as to what steps I should take from here. I have an appointment with another neurologist June 25. I will ask for another EMG on all four limbs. I don't know if I should ask for maybe some sort of viral antibotics? Some of the symptoms are weight related but I have lost quite a few pounds due to this whole ordeal. I went from 237- 217 from March to June.

I'm not really sure what i should do from here. I'm scared. Like I said before, I wouldn't be as freaked out if my symptoms were slowly going away. But they either plateau or they get worse. I don't know what to do. I'm here alone in this. Not knowing is what's so scary.


sorry for any spelling mistakes. My Grammar sucks!
 

Alyoop

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I think you have answered your own question, you have another neurologist appointment in just 5 days. Just wait and see what the new doctor has to say. I think you have done what many people do, and that is take every little thing happening to your health and try and lump it all together. That makes it very near impossible for a Doctor to sort it all out. If you go demanding tests , then you will be labelled as over anxious, whether there is any truth in that or not. If the neurolgist thinks you need a test, then he will order it. If not, then be happy about it.

The question about the EMG being done too early, is constantly asked, and the answer as always is a big fat NO. If you have symptoms or signs that point to an issue requiring the EMG, then there will be signs on the test, if done competently and thoroughly. Think about it.........

You are scared, but you have done the right thing in getting a second opinion, so as to reassure you. Listen to the Doctor, Believe the Doctor, If you dont, you will be back here again, getting no where.
 

HelenL

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I think I've mentioned this once or twice on this forum, but have you been tested for LYME disease? Very good at hiding in advanced cases, and you would need to take the Western Blot test, NOT the Elisa. Read up on it on the Lyme forums.

Aly is right though about the EMG... AND, not only is she VERY knowledgeable in her own right, she is married to a neuro.

I've learned that EMG's will pick up stuff that is wrong BEFORE you even start noticing them, and yours seem not to be picking up stuff after you're noticing it. That means the problem isn't there. Good luck with the doctor, but let him/her do the talking and listen to not only what they are saying, but what they aren't.
 

trfogey

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deniseannette,

Did a doctor tell you that you have weakness (as in clinical weakness) or is this something you feel (perceived weakness)?

And, no, you did not have the EMG done too early. It's simply a test of your nerve function, just as a throat culture is a test for bacterial causes of a sore throat. When a throat culture comes back negative, you know you don't have strep throat, so you look for another cause for your sore throat. It could be a viral infection. It could be some kind of irritation from smoke or spicy food or shouting too loudly in a loud environment.

You simply know it's not strep throat because the throat culture was negative, so you move on to the next most likely cause that accounts for your sore throat. You don't keep insisting that you must have a strep throat and 1) the culture was done too early, or 2) the doctor didn't swab your throat in exactly the right place, or 3) you've heard or read about other people that had negative throat cultures and developed strep throat sometime later in their life, so it is still possible for you to have strep at some stealthy subclinical level.

The same thing goes for the EMG/NCV study and the clinical neurological examination you've had. The "unremarkable" EMG/NCV test you've had rules out lower motor neuron problems as a cause for your current condition. The clinical neurological exam was apparently just as unremarkable because the only result you've reported from that is myokymia, with no clinical manifestations of either lower motor neuron problems or upper motor neuron problems.

If you don't have lower motor neuron problems and you don't have upper motor neuron problems, you don't have a motor neuron disease (MND). And if you don't have a MND, you don't have ALS.

That having been said, it doesn't mean that you don't have something (or, more likely, more than one thing) wrong with you. It just means that MND isn't what you have.
 

notme

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A lot of your symptoms sound like sleep issues...headaches in the AM, etc. If you are overweight sleep apnea is always possible. O2 levels off can cause all sorts of issues. No doc has suggested a sleep study?

As said already. EMG was not dome too early. Things show up on them before symptoms would.
 

deniseannette

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I haven't been here for a while. I took all of your advice and tried to go out and live my life and get some much need sleep. Unfortunately, I'm still quite ill. I'm about 70 percent sure it's not ALS but I thought I would come back here and get some advice as to what next step I should take. My symptoms now:


Muscle twitching: widespread
Aching muscles: different parts of muscles on my body ache "hot spots"
Bone crack: very severe not painful at all except my hands
Head pressure
Head Parathesia ( goes away while im showering,creeps back up)
Head twitching (front of forehead, very scary, hard to deal with)
Headaches (everyday, different spots on my head CT scan normal)
Eye pain (more frequent now, comes and goes)
Stiffness in right calf muscle
Clogging and unclogging of ears.
When I walk I can hear my spine (cervical mainly) cracking. its sounds like it's tearing
Slight weakness and tingling pain in left hand
Wetness/dripping in head, mainly in back of head (happened tonight, completely terrified.)
Stomach aches. (ultrasound normal, thinking of getting a CT scan)
Dizziness
Easily startled

I got my blood work test results back. I was diagnosed with iron deficiency anemia. I was prescribed a drug called Euro-fer. I started to have heart palpations so I got off it. I also believe that I might have vitamin D deficiency. I avoid the sun like the plague (I swear I'm a vampire:p) I have a darker skin complexion and when i do go out in the sun, im usually wearing long sleeves. I'm praying that that's the reason for my symptoms.

I asked my doc about vitamin d. I would have to pay 50 dollars to get it done. She said there is no point cause most Canadians are vitamin d deficient anyways. I would still like to get it done. Just for peace of mind-sake. Do you think I should? My calcium and B12 levels are normal. I'm now taking 1000 IU of vitamin d and vitamin B complex. No results yet.

After nine weeks of this, I went back to work. Everyone was shocked by how much weight I lost. I lost about 20 pounds in 9 weeks. My co-workers were telling me to keep up the good job and keep going with my weight loss. I'm scared it might be because of an illness or something.

I'm getting about 5-6 hours of sleep now. I'll wake up about every hour to 2 hours and then fall right back to sleep. i occasionally get some jerking but it's getting better. i dunno if I should still get that sleep study done.

I'm praying that this is all post viral. I was deal with a virus/some sort of infection (ER doctor didnt tell me what exactly). I'm still trying to get my EMG report. The docs at the clinic refuse to give it to me, due to their new policy. Getting a MRI is like pulling teeth. So I don't know what steps to take. I'm just scared and fed up.
 
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ysato

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Hi... Iʻm pretty sure itʻs not ALS... but whatever it is you need to find the right MD for whats going on... My MD sent me to do PT in regards to my concern, My PT notice that it was something more then back pain and weak legs... My MD then sent me to a Ortho specialist who wanted to do surgery on my spine to clear the problem but he insisted I see a Nuro first... and that was a yr 1/2 ago... did all the crazy testing which concluded ALS, I also reconfirmed it by going to Mayo Clinic in Minnesota per my Nuro referral... yes... this sucks but we PALS do the best we can each day we are given... Have a cup a Tea and try and relax... I wouldnʻt waste my money on Vitamins just yet... you are blessed...believe it or not... We are dealing with what we are given.... Go for a walk, run, ride see a movie laugh and wait until your MD appt... Ohh... donʻt let fear get the best of you... itʻs not worth it... hang tough... aloha, yo
 

deniseannette

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Thanks for your reply and aloha! I have been to two neuros. The first one was really nice and said that I had mykomia (sp?). The second one wasn't too nice and was very quick to push me out the door cause he couldn't see my twitches. The first doc said that it might be related to my iron deficiency and to come back in 4 months. I don't feel gravely ill but I'm not getting better. The head twitching, tingling and wetness is what scared me the most. It's very debilitating.
 
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