symptoms

Posted by Mindy on June 12, 1999 at 09:28:53
When all of
this twitching started, I wasn't too concerned. After about 2 months, I visited my PCP, who said it
was probably benign and stress related. After 4 months, they were still there. Read about
fasciculations and EMGs in medical books and freaked out about ALS! Found this forum and it has
provided great reassurance. At 5 1/2 months, I had an EMG, nerve conduction and reflex tests. All
absolutely normal--didn't even pick up the fasciculations. Both doctors said "It's nothing really bad".
The doctor who performed the EMG knew how nervous I was and even tried reassuring me that if
there was anything there, he would have picked it up, since he was very acitvely trying to find
something--inserted 15-20 areas, 2-4 times in each area.
I guess what's troubling me most is that I never really received a diagnosis. Just that the tests all
come back fine. I don't have any real weakness--can still carry 60lbs worth of kids up and down the
steps, open jars, heel-toe walk, etc. I have had a lot of stiffness in my right knee and hip, although
probably due more to carrying the kids than anything else.
I'm dealing o.k. with the twitching, which is all over my body from head to toe. However, about a
week ago I noticed a "numb feeling" on the bottom of my right foot. It didn't feel like your hand feels
when you sleep on it all night and I still had sensation in it--could feel the lightest feather touch, but it
just "felt numb". I had no trouble walking, doing calf raises, etc. With a shoe or sandal on, I didn't
sense the "numbness". Has anyone else had this feeling? I'm still a little concerned about MS, since I
haven't had an MRI. What do you think?  Do these symptoms sound like BFS, MS, Fibromyalgia, or something different?
BTW, I'm a normally very healthy, 28 year old female, mother of two.

Posted by CCF Neuro[P] MD, RPS on June 12, 1999 at 12:57:32
Dear Mindy:
What you describe sounds like benign fasciculations.  With all the test being normal, this is what I would call it.  Without muscle weakness, it is almost always not ALS.  
It is difficult to tell you what the parathesias are from, spinal cord, nerve compression for pressure (sleeping the wrong way) metabolic (such as vitamin B12 deficiency), etc.  At this point, I think I would just watch what happens.  If things do not get better within a few weeks then I would have it checked out by a neurologist.  Some times we find that mothers who have large children who like to be held get nerve compressions from the act of holding the child, that will resolve when positions are changed or correct lifting is started.  
Sorry I couldn't help you more.  Enjoy your children and keep us informed.
Sincerely,
CCF Neuro[P] MD

Posted by Razorback on June 12, 1999 at 16:51:35
Hi,
I am so sorry to bother you, and I know that this is way off the subject, but I cannot find much information on the net about this.  I just recently tested positive for the achr antibodies and was told that I most likely have general myasthenia gravis.  I have had other symptoms such as sensory problems and tingling, as well as loss of reflexes.  I had read that reflexes are usually ok with MG.  The neuro told my family doc he did not think it was LEMS (as that is what the family doc thought it was) for a reason, but he could not remember it. I am scheduled for further testing, but do not know what the tests will be yet as it has only been 3 days since I found out.  How would one distinguish MG from LEMS and ALS?  I am very confused and frightened at this point.
Thank you for your time.

Posted by CCF Neuro[P] MD, RPS on June 13, 1999 at 12:17:49
Dear Razorback:
Sorry to hear about your Myasthenia Gravis.  You are correct, usually the person with MG has reflexes.  However, if the process has gone on for awhile, a patient may lose reflexes.  For the most part, this disease is autoimmune in nature.  For some reason you have developed antibodies against the acetylcholine receptor (or other antibodies that inhibit its proper functioning).  The usual mode of treatment is plasmaphoresis if the disease is severe and then medical treatment of an anticholinesterase.  (Antichloinesterase will allow the body to keep acetyl choline at higher levels).  If the disease is not severe, then just medical management.  Some times the patient needs steriods to help keep down the production of antibodies, but this varies.  We will often recommend that the thymus gland be removed.  This operatin often helps lessen the chronic course of the disease.
I would not worry about Lambert-Eaton syndrome.  These patients produce an antibody against a calcium channel in the nerve synapse.  You do not have this antibody.  An EMG would also confirm this difference between MG.  Usually ALS patients do not produce antibodies against the acetylcholine receptor, so I wouldn't worry about this disease either.
I hope your MG is easily controlled.
Sincerely,
CCF Neuro[P] MD

Posted by razorback on June 13, 1999 at 22:04:17
Thank you for your answer.  It helped me a lot.  I would like to ask one other question if I may.  My sister called me today and told me that muscle relaxants can give a false positive on the achr antibody test.  I take 10 mg of baclofen at bedtime for severe muscle cramps in my calves and feet, would that drug alter the achr test?  I have noticed also that since taking the baclofen my weakness has increased dramatically in the legs and the arms agravated by heat which causes stiffness and shaking in the legs and arms.  The level of the antibodies was 2.5 per my gp.  
Thank you again.
Posted by CCF Neuro[P] MD, RPS on June 15, 1999 at 11:15:36
Dear Razorback:
Baclofen is an antispasmodic medication.  It acts on the GABA receptors in the spinal cord, and it will make muscles weaker (reduces spasm).  You should feel weaker.  I have not heard of baclofen giving a false positive test for acetylcholine receptor by the ELISA method.
Sincerely,
CCF Neuro[P] MD

Posted by razorback..thank you on June 15, 1999 at 12:10:40
thank you for explaining that to me.
Posted by CCF Neuro[P] MD, RPS on June 16, 1999 at 22:27:39

My pleasure.
CCF Neuro MD

Posted by razorback on June 18, 1999 at 19:08:02
I am sorry to bother you once more, but what are the chances of having a false positive on the achr antibody test.  I know it was performed at a lab at some university setting in utah, and the value was 2.5, which is low.  Is it possible?  Two days prior to the test, I had severe neck spasm, then a pain went from my neck down my back and into my right leg and my legs felt weak for the rest of the night, then the day after that, my thigh muscles were sore like I had worked out, and they felt weak.  I am really upset about all of this. Thank you for your patience and your knowledge.
razorback

Posted by CCF Neuro[P] MD, RPS on June 21, 1999 at 08:53:07
Dear Razorback:
Yes, it is always possible that a test can yield a false positive.  However, since the symptoms line up with the test, it might not be a false positive.  If you are concerned, have them repeat the test.
Sincerely,
CCF Neuro[P] MD,

Posted by razorback on June 21, 1999 at 17:02:17
Thank you for your answer, I guess I should have explained the other issues, you explained to me the loss of reflexes which I understand.  I also have had tingling, twitching, and parathesia.  This all started in my legs and moved its way up to my arms.  I know this is not textbook and I am completely ignorant about myasthenia gravis.  My neuro at Chapel Hill called today and wanted to repeat the achr antibody and have it sent to Mayo for a confirmation, he thinks it may be a false positive but really isnt sure until the test comes back.  Have you heard of these symptoms, even though they are not textbook with myasthenia gravis?  I have had a single fiber emg but it was on the right leg and right lower back, but that was for an old chronic radiculopathy which showed mainly mildly reduced interference patterns on the right medial gastroncnemius, the right short head femoral, the right gluteus medius, and the interference pattern is not mentioned on the right lubo-sacral paraspinals.  It does state few complex and serrated motor units on the g. medius, and the right lubo-sacral, and simple configuration with increased duration and stable motor units on the right medial.  I dont know if that is all radiculopathy or not. On my eye exam they wrote jerky on my saccades, and this past weekend, I noticed a couple of light tongue twitches.  I guess you can see that I am concerned about this whole ordeal and was taken aback when my gp called me. I do not know what my doctor's intentions are if the test comes back positive again or if it comes back negative. He told me he did not want to treat for for mg if it wasn't because the medicines can hurt me, which I fully understand. I hear that this is an awful illness and have been very upset since my gp called me about it.
Thank you for your time and patience.
Razorback

Posted by CCF Neuro[P] MD, RPS on June 24, 1999 at 17:13:02
Dear Razorback:
Wait for the repeat test.  It is difficult to tell from your EMG because of the old neuropathy you had.  However, I think I would undergo treatment if the receptor antibody comes back positive.
Sincerely
CCF Neuro MD
Posted by razorback-update on test on July 03, 1999 at 11:47:50
I thought that I would let you know that the test came back positive again.  It had 2.52 on the binding antibodies, 94% on the modulating antibodies, and the blocking antibodies were normal.  He said that the modulating antibodies were high.  Do you know what those do?  I am scheduled for a single fiber emg and a ct of my chest.  I guess he will start treatment for it after that.
Thank you

Posted by CCF Neuro[P] MD, RPS on July 03, 1999 at 12:24:56
Dear Razorback:
Modulating antibodies are antibodies that bind to the acetylcholine receptor or just around the receptor that alter the ability of the receptor to bind acetylcholine.  Because of this, your muscle does not get the full information to fire or move when needed.  Therefore you become weak.
I am sorry to hear about the positive test.  At least you can start the medication now and resume a more normal life.
Sincerely
CCF Neuro MD