on-going painless asymmetrical weakness could it be TOS?

[Oldaugie]

Last Summer and fall (2006) it became apparent that the finger extensors were not working properly in my left hand. Later it became apparent that my wrist was also incredibly weak. I had a neck MRI, blood tests and a neurological examination where they found weakness in my hand and wrist. I've had fasciculations in the left forearm evem before last summer.

I had am EMG which showed no response from the elbow down. That led to an elbow MRI which revealed nothing. the Orthopod did a nerve compression release on my left forearm in December. That seemed to permit mobility in my hand once again - for about a week. Then it started all over.
I also have felt some weakness in my left quad and lower leg. This was found through testing by a followup visit to an orthopedist. At times my legs ache so much that I have to sit down and put my feet up to get some relief from the pain.
I got in to see a neurologist who did some testing and said that he found little or no weakness in my legs and that he thought it was my shoulder (TOS perhaps).

The neurologist found only Lower motor neuron signs - no upper ones at all.  My hand is really working poorly and it interfers with typing at work, cooking at home and almost everything I do. What else should I be looking at/for.

[Cleveland Clinic, MD]

I'm glad you already have a diagnosis. CIDP sounds less likely because it's typically a symmetric involvement of both sides, has sensory components (numbness, tingling, neuropathic pain), course is more progressive with periods of relapse.

let me take the opportunity to talk briefly about multifocal motor neuropathy.

Multifocal Motor Neuropathy (MMN) is a condition characterized by slowly progressive asymmetric weakness that typically involves the upper extremities, might involve the legs at some point. it's usually presented as muscle weakness, atrophy, cramps and fasciculations. this means it's a lower motor neuron disease rather than an upper motor neuron disease i.e: disease process involves the peripheral nervous system not the central nervous system. it's unique in the lack of cranial nerve involvement (no difficulty in swallowing, breathing, talking, vision...etc) and lack of sensory symptoms (rare cases have some element of sensory involvement; numbness, tingling..etc). course is typically indolent and evolves over months to years. hallmark on electrodiagnostic testing is conduction blocks in motor nerves (hence the name MMNCB, or MMN with conduction blocks). anti-GM1 antobodies are present in 80% of patients, though can't be used as a sole measure for diagnosis.

The treatment for MMN is immunosuppressive therapy with IVIG, given at a dose of 400 mg/kg per day for 5 days, response usually expected within 2 weeks of infusion and lasts for around 2 months so subsequent maintenance boosters are needed. it was shown that adding oral medications like cyclophosphamide helps reducing the frequency of IVIG boosters needed. typical side effects for IVIG include allergic reactions (especially in patients who are deficient in IgA), headache, rash, fever, blood pressure drops, flu-like symptoms. more serious adverse effects might include fluid overload, heart failure, kidney failure. if there is no response within 1 month of initial dose usually a 2nd dose can be tried and if still no improvement the diagnosis needs to be reassessed.

Good luck! I hope you feel better soon.

[mike1105]

your issues may be all Myofascial-- sepecially considering you had relief with "nerve compression release" ( I am assuming that what you had was really myofascial release). I'd visit a site by John Barnes (Myofascial Release) and perhaps consider a visit to his clinic in Paoli, Pennsylvania.

[Oldaugie]

Myofacial requires pain doesn't it?  I've had no pain, just weakness !  But I'll look  into it thanks.

[mike1105]

yes you are right, forgive me for misreading your post. afgter re-reading it, i think it is doubtful that you your problems are of a myofascial origin.

[Quixotic1]

Has your neurologist considered CIDP Chronic Inflammatory Demyelinating Polyradiculopathy?  It's a demyelinating disease of lower neurons.  The defect is usually motor greater than sensory, but can be mixed or purely one of the other.

Older descriptions of the group of diseases that are included in CIDP state that this is always symmetrical.  But newer articles describe assymetric (one sided) variants.

The thing to remember is that it is a disorder of peripheral nerves, NOT the CNS or the spinal cord.  And that it has enormous variation in how it presents, how it may progress and that it often shows a relapsing pattern.  The other thing that is critical to know is that some forms are quite treatable.  Thus, it is important to keep this diagnosis in mind.

Here are some links:

http://members.shaw.ca/btillieribm/cidp.htm

http://millercenter.uchicago.edu/learnaboutpn/typesofpn/inflammatory/cidp.shtml
http://autoimmunedisease.suite101.com/article.cfm/cidp

The 3rd one is probably the best desciption.

Quix

[Quixotic1]

Your asked if TOS could be responsible for your symptoms.  It ABSOLUTELY could NOT explain the symptoms in your legs. Period.  I meant to add that in my post above.  Quix

[Oldaugie]

Update:

Brain MRI was clear as was the Chest xray.  Neurologisyt found significant abnormalities in the tricep and bicep upon new emg exam.  He feels it is TOS and has recommended Physical therapy - that the leg problems are completely unrelated.  My Orthopedist still thinks TOS is not the whole picture and that he found a weakness inthe left leg.  

Plan now is to do PT for two months to see if it will allow movement to be regained in weak hand.  

Not sure who to believe at this point - I feel legs are a problem but it could be simple aging or something else - pain in legs in muscles not joints.  Just some more food for thought.

[Quixotic1]

So it sounds like the nerve conduction studies found problems in the left arm and left leg.  You also said your legs bothered you.  Do you have pain in both legs?  Is the right leg also weak?  Have you noticed any problems in the right arm or hand?

It seems a little odd to diagnose TOS and ignore similar problems in the leg.  That would invite two separate diagnoses.  That's not impossible, but we usually try first to answer all the problems with one diagnosis (which is more common) and then settle on two when we have to.

If you, indeed, have problems in both legs, I  would still suggest that your doctors consider CIDP.  This is a demyelinating disease of peripheral nerves.  This means the MRI's of the brain and spine won't show lesions, but the nerve studies will show diffuse problems - exactly what you have.  Typically you see slowing in nerve conduction velocity.

Part of the diagnosis of this disorder is a spinal tap which will show increased protein in the fluid.

Quix

[frustrated vet]

For 2 years I have expierenced progressive weakness , stiffining , and my gait down now to about 6 inches. I had an MRI done on the upper cervical with negitive results. As I do have occassional leg tremors I have been prescibed baclofen which has made me extremely  more tired. After more than 30 blood tests , so far negative and no pain in legs or back( never have had any), The V.A.  still has no answers  Do you have any posible answers

[Oldaugie]

Went back to Neuro.  He no longer believes TOS but thinks a pinched radial nerve in upper arm - above elbow but below shoulder.  Apparently only the radial nerve is involved.  He see no real evidence in any other area of my body. - The leg symptoms may be my own creation of anxiety.

[Oldaugie]

Another update : .  I've been sent by the neurologist to Mass general to see orthopedic surgeon...I've jsut noticed that I seem to have fasciculations of the tongue...Still no upper motor signs.  I'm thinking this is more than a nerve compression between the shoulder and elbow...

[Oldaugie]

I'll pursue the CIDP - I'm thinking that it could be either that or lyme disease...Thanks for your above answers.  They were most helpful.

[Oldaugie]

FWIW - I finally have a diagnosis.   Multifocal Motor Neuron Disease!

[Cleveland Clinic, MD]

I'm glad you already have a diagnosis. CIDP sounds less likely because it's typically a symmetric involvement of both sides, has sensory components (numbness, tingling, neuropathic pain), course is more progressive with periods of relapse.

let me take the opportunity to talk briefly about multifocal motor neuropathy.

Multifocal Motor Neuropathy (MMN) is a condition characterized by slowly progressive asymmetric weakness that typically involves the upper extremities, might involve the legs at some point. it's usually presented as muscle weakness, atrophy, cramps and fasciculations. this means it's a lower motor neuron disease rather than an upper motor neuron disease i.e: disease process involves the peripheral nervous system not the central nervous system. it's unique in the lack of cranial nerve involvement (no difficulty in swallowing, breathing, talking, vision...etc) and lack of sensory symptoms (rare cases have some element of sensory involvement; numbness, tingling..etc). course is typically indolent and evolves over months to years. hallmark on electrodiagnostic testing is conduction blocks in motor nerves (hence the name MMNCB, or MMN with conduction blocks). anti-GM1 antobodies are present in 80% of patients, though can't be used as a sole measure for diagnosis.

The treatment for MMN is immunosuppressive therapy with IVIG, given at a dose of 400 mg/kg per day for 5 days, response usually expected within 2 weeks of infusion and lasts for around 2 months so subsequent maintenance boosters are needed. it was shown that adding oral medications like cyclophosphamide helps reducing the frequency of IVIG boosters needed. typical side effects for IVIG include allergic reactions (especially in patients who are deficient in IgA), headache, rash, fever, blood pressure drops, flu-like symptoms. more serious adverse effects might include fluid overload, heart failure, kidney failure. if there is no response within 1 month of initial dose usually a 2nd dose can be tried and if still no improvement the diagnosis needs to be reassessed.

Good luck! I hope you feel better soon.