Re: What do you make of this?

Posted By Irene on July 31, 1999 at 09:45:42
Hi,
I have several questions that I would like to ask.  I have a multitude of symptoms and tests which have confused my neurologists.  My symptoms started in my feet mainly twitching, cramps, tingling, and numbness up to my knees.  Progressed to arms, twitching, muscle jerks, occasional numbness under arms.  Numbness in upper inner thighs and buttocks.  Neck spasms occurred recently as well as a feeling of being more tired.  Off balance sporatically as well as increasing weakness in hands ex: dropping things.  Occasional foot drop. I developed tingling in face as in creepy crawly on cheeks, nose and chin.  One episode of l'hermettes when one severe neck spasm occurred.  I have had 3-4 occasions of tongue tip tingling, followed by light tongue twitching.   What has bothered me the most I started having twitching in my left cheek.  The next day the left muscle in my throat started twitching.  The throat happened only once and I believe it resolved within 15-20 minutes followed by a tightness feeling on left side which resolved around lunch time the following day. I have diminished deep tendon reflexes at 0-trace. My mri's are clear, ct of chest clear, all labs including hiv, syphillis (syphilis), b12, homocystine, anything a neuro would test for have been ok.  The only positives that I have had have been a low ana at 1:40 speckled, delayed somatosensory lower extremities more so on left than right, right lower radiculopathy, and positive achr antibodies blocking 0.00, binding 2.52, modulating 94% loss.  My neuro seems to think that I have MS apparantly due to clinical findings only, he thinks that the antibody is subclinical.  My questions are:
1)  Can this twitching that I am having be cause by MS or MG?
2)  I know that sensory problems do not affiliate with ALS, but is there that possiblity?
3)  Can these antibodies appear in MS or ALS due to the disease process and not really be MG?
4)  Can the decreased/absent reflexes be asssociated with the MG, MS, or ALS?
5)  My neuro has told me that if the SFEMG is negative, he will not treat for MG.  If I have a 94% loss of the ACHR's, what will happen if that is not remedied and what could cause the loss of them if it is not MG?
My neuro has told me that I do not have LEMS due to the way the antibody test came out.  My ct of chest is ok, no enlarged thymus and lungs are clear with no nodules.  I have had occasional weakness in jaws, not much.  I am only 37 years old and there is nothing better that I would like to do than to feel better, get my strength back and not have to take a nap when I get home from work.  I used to be a very active person and this has taken a toll on me.  I am sorry for the long posting and I am very thankful for any information that you would have to offer.
Thank you,
Irene

[CCF MD mdf]

Posted By CCF MD mdf on July 31, 1999 at 23:28:30
Your symptoms are sufficiently complex to make it impossible to render accurate diagnosis in this forum. However, perhaps I can give you enough information about MG (and LEMS), ALS, and MS so you can follow along with how your neurologist is thinking.
MG:
MG (myasthenia gravis) is a disorder of the neuromuscular junction. Physically, that junction is where the motor nerve ends and attaches to the muscle. Chemically, there is a complex series of events that takes place, triggered by electrical signal rolling down the nerve, causing release of acetylcholine and binding of acetylcholine at the muscle to initiate electrical events which ultimately result in muscle contraction.
In MG and LEMS (Lambert-Eaton myasthenic syndrome), there is an antibody which interferes with that process somehow (there are very specific differences).
Therefore, in MG, one does not expect sensory symptoms, because the pathology is at the junction between the motor nerve and the muscle fibers. There are certain patterns of muscle weakness expected throughout the body, and certain patterns of fatiguability, and certain findings demonstratable on nerve conduction studies and EMG.
ALS:
ALS (amyotrophic lateral sclerosis) is a disorder of motor neurons. Affected motor neurons are the ones leading from the brain to the spinal cord (upper motor neurons) and the ones leading from the spinal cord to the muscles (lower motor neurons, alpha motor neurons). It is a rapidly progressive degenerative disease. That is, these cells die one by one. In contrast to MG, there is no antibody involved.
Symptoms include weakness (fasciculations are a symptom that many people become concerned about, but you can have those without having anything bad). Here, too, sensory symptoms are not expected.
MS:
MS (multiple sclerosis) is a disorder of myelin in the central nervous system. The immune system attacks this insulating coating around fibers and thus disrupts the communication of one part of the brain and spinal cord to other parts. Despite the involvement of the immune system, no one has demonstrated a specific antibody; the mechanisms of damage are different.
One can get a whole bunch of different types of symptoms, and the general public knows it and people can become very frightened of symptoms which they think might indicate MS (sample numerous questions in our own archives).
The key for the clinician is to link symptoms with suspected damage in the brain or spinal cord which could be demyelination. In specific individuals, many potentially worrisome symptoms can be localized somewhere else and therefore the suspicion of MS can be dropped.
MS is a CENTRAL nervous system disorder. MG is a PERIPHERAL nervous system disorder, and despite the apparent similarity in names, one has absolutely nothing to do with the other. ALS is a mixed central and peripheral disorder which has its own characteristic signature to the experienced observer.
Sorry about the rambling response. I hope this helps. CCF MD mdf.

[Irene__0__0]

Posted By Irene on August 01, 1999 at 09:19:13
Thank you for your clarification of the diseases.  I have done much research about them and I appreciate you putting them in laymen's terms for me.  I have been really concerned about this and have a hard time following what my neurologist is thinking.  I really dont have any positive tests for MS, and I can assume that he is thinking it is MS due to my symptoms and the fact that my brother has secondary progressive MS.  Then we had the antibody test that came back positive, which shocked my GP and my neurologist.  Again, confusion, as my GP told me he had spoken to my neurologist and he said that my neuro told him that he said that he thinks I still have MS, and added that if that be the case, then he will have to explain the positive antibody test.   Of course that is a concern for me after reading about MG and the horrible things that can happen if you are not treated.  Then we have all the symptoms that dont fit either of them as the twitching, loss of reflexes, etc.  The two MG and MS do have their own set.  Then I read that the AChR antibodies can somtimes come up positive in ALS, ok then I got really concerned, especially about the twitching.  Needless to say the symptoms alone have been upsetting, to be walking along and have your right leg stay behind and stop momentarily and then start back up walking, that would freak anyone out.  I have read that the modulating antibodies are considered a loss of the acetycholine receptors.  That is why I am concerned about that one, what happens if I am not treated to get those back?  I know there are many factors involved here symptom wise, test wise, etc.  That is why I asked those specific questions.  Maybe they were not appropriate questions.  I would much appreciate if it is at all possible to address some of those, especially regarding the loss the of the AChR's.  Thank you for your wonderful site and knowledge.
Irene

[CCF Neuro[P] MD RPS]

Posted By CCF Neuro[P] MD, RPS on August 01, 1999 at 17:02:03
Dear Irene:
Sorry about your problem.  What were the results from your CSF study?  Did the EMG study indicate anything about amplitudes?  Anyway, MS does not give a patient loss of reflexes. Most of the time there are CSF changes such as oligoclonal banding and myelin basic protein in the CSF. There are usually no sensory changes in ALS.  In MG, there are antibodies and muscle weakness and occasionally some paraesthesias.  The symptoms in MG can wax and wane throughout the day.  It really does sound like you have MG.  Let us know how things work out.  
Sincerely,
CCF Neuro MD

[Irene__0__0]

Posted By Irene on August 01, 1999 at 17:38:10
Thank you for your response.  The CSF was fine, and as I stated above all tests for MS have been normal. I have not had the SFEMG, that is scheduled for Wednesday.  I am fully aware of what you have written above.  My problem is trying to understand why he thinks that I have MS and that the antibody is subclinical to it.  He told me that if the sfemg is negative, he will not treat me for MG.  That the antibodies can change.  I have been told that the twitching is not associated with MG.  The biggest concern that I have is the effect on my body and possible damage done due to the loss of the modulating antibodies with no treatment.  I understand that you cannot make a diagnosis from here and I never asked for that.  I asked those questions, trying to help me get clarification on the situation so that I may be prepared to approach the doctor, if in fact my SFEMG is negative.  I really feel that I have been bothersome, and I am sorry for that.  Thank you for your help.

[CCF Neuro[P] MD RPS]

Posted By CCF Neuro[P] MD, RPS on August 02, 1999 at 12:37:13
Dear Irene:
The diagnosis of MS is clinical, with multiple episodes of waxing and waning muscle/nerve symptoms such as weakness, numbness, etc.  We have seen a few people present with symptoms without any additional positive tests such as increased CSF protein, oligoclonal bands, myelin basic protein, and changes on the MRI.  However, in all these people there have been upper motor neuron signs such as hyper-refexia, spasticity, etc.  You do not have these signs, and if anything all your signs and symptoms are lower motor neuron/peripheral nervous system.  I would find it difficult to give you the diagnosis of MS based on what you have told me.  Maybe, your neurologist sees something in the physical exam and I am just not connecting with.  Your neurologist is correct and antibodies can change in level.  However, they are not normal and they have to be explained in context of your symptoms.  He/she really needs to explain why they are there and how they are not causing your loss of muscle function.  The EMG will help him/her in how they think about what you have.  Let us know how it turns out.
Sincerely,
CCF Neuro MD

[Ed__0]

Posted By Ed on August 06, 1999 at 18:47:46
Can you really have good reflexes that go to nothing in your arms and legs and have als?
Thanks










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Re: What do you make of this? CCF Neuro[P] MD, RPS 8/07/1999
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