Arm Pain - Neurology

by cs, Jun 22, 2000 12:00AM

I apologize for adding this onto another post but I have been trying to post a question for weeks.  This is a long but complete history of my husbands problems.  Thanks in advance for any comments you have, especially since I had to post on another question!  We are desperate.
  My husband is a 30 yr. old male who has shown multiple syptoms (symptoms) and seen several doctors with a
diagnosis at one point of monosymptomatic demyelinating disease.  Early in 1999 he began feeling
generally fatigued and ran a mild fever for a few days (came and went).  He didn't think much of this and
did not see a doctor for it.  Also, in early January he went to a local optometrist for a general eye exam for
his glasses and the optometrist noticed a hemorrhage in the left eye.  He referred my husband to an
ophthalmologist nearby who confirmed a retinal hemorrhage due to multiple venous occlusions of the
vessels which were described as being telangiectatic.  He suggested that we wait to see if it would resolve
on its own.  After he was rechecked the hemorrhage had not resolved and he suggest we see an
ophthalmologist at the University of Iowa that he knew.  The visit to the Univ. of Iowa occurred after the
following events.
A few months after the initial feeling of fatigue and mild fever he was shingling the roof of a
house and during the night (he woke up with it in the morning) he noticed numbness in his right
fingertips.  He also noticed a large reddened area that appeared to be an insect bite or bruise on his left
arm, but he did not recall being bitten by anything or hitting his arm that day.  This was somewhat
concerning because he doesn't bruise easily.  The numbness in the right fingertips continued and he went
to see a general practitioner for it.  During the physical they discussed the retinal hemorrhage and the
doctor decided to run an ECG which was abnormal (I'm not exactly sure what abnormality was noted) and
the doctor said it could be from a possible mild heart attack at one time.  He sent my husband to a nearby
hospital to have an echocardiogram performed just to check everything.  The echo was normal and no
further tests were performed to double check the original abnormality.  He has been known to complain of
chest pains off and on (approx. every 2 months or so), not a pain like tightness but a sharp pain.  His
sternum will also 'pop' once in a while (a deep/loud 'thunk') and it will be really sore sometimes.  He does
smoke approx. 2 packs/day.  An MRI was also scheduled at the hospital due to the numbness and vascular
concerns.  The results showed 4-5 white matter lesions, some were located periventricular and I believe
most of them, if not all, were on the left side of the brain.  From here he went to a local neurologist who
performed an EMG on his right arm which was normal (tested for carpal tunnel).  Because of the wait
required before more tests could be done we decided to go to Mayo Clinic taking a chance at a walk in
appointment.  He got to see a neurologist there that day who performed another MRI with similar results
and also the following tests with their results:  Phospho/Cardiolipin AB - IgG phoslipid Ab = neg, IgM
phoslipid Ab = pos. 1:16;  L.P. Observation - Initial pressure = 190 mmH20, Interspace = L4 - 5, Quantity
= 10ml spinal;  CSF IgG Index = 1.09 index, IgG (CSF) = 9.55mg/dl, Albumin (CSF) = 40mg/dl, IgG (s)
= 982mg/dl, Albumin (s) = 4480mg/dl, IgG/Albumin (CSF) = 0.24 ratio, IgG/Albumin (s) = 0.22 ratio,
Synthesis rate (CSF) = 26.99mg/24hrs, unique CSF bands = 2;  CSF tests - Glucose (CSF) = 54mg/dl,
Protein Total (CSF) = 86mg/dl;  Body Fluid Cell Count - Fluid type = CSF, Gross Appear. = clear, Total
Nuc. Cells = 10/ul, Erythrocytes = 0/ul, lymphocytes = 92%, monocytes = 8%.  These were the test results
run.  The neurologist seemed unsure at this point of a diagnosis of multiple sclerosis or some sort of
vasculitis.  I believe he also did an estimated Sed. Rate which was normal.  We informed him of the
retinal hemorrhage and he seemed concerned so he set up an appt. with their ophthalmologist.  This
exam, I feel, was not very thorough compared to the exam performed by our local ophthalmologist,
however they did not see the retinal hemorrhage and, therefore, treated him as if there was not one.  This
was disturbing because we had it rechecked later at home and it was still present and later had to be
lasered.  I am concerned that the finding of the hemorrhage may have led the Mayo neurologist in another
direction.  The neurologist sent my husband to a different neurologist at Mayo who worked more
specifically with MS patients to get his opinion.  This doctor did not examine my husband, a doctor
visiting from Canada under supervision of the neurologist is the one who performed the exam.  The doctor
we were referred to did not even spend more than five minutes with us the whole time and then diagnosed
him with monosymptomatic demyelinating disease based on the MRI results and symptoms (at this time
the CSF results were not back).  He said we would need to wait and see if he has another 'episode' or
'attack'.  The only problem is his symptoms have never gone away and they do not get worse like people
describe with exacerbations.  His symtoms are there 95% of the time every day and he feels they are very
slowly progressing.  I don't physically see progression of his physical neurologic symptom (foot slapping
the ground after walking a while- not real obvious), but he feels more fatigued.  He has horrible mornings
where he doesn't want to get up and then at bedtime is wide awake and cannot sleep, which is likely
contributing to his fatigue.  He says the numbness comes and goes within the day and he will feel pretty
good one time and a few hours later feel like he won't make it through work.  His job involves operating
heavy equipment for a county road department.
While he was at the Univ. of  Iowa for his eye we decided to get a second opinion from a
neurologist there.  A thorough neurologic exam was performed and the test results from the CSF tap were
provided to them.  They ran several additional tests: CBC/chemistries, B12 w/ IFBA, Folate, Rapid
Plasmin Reagin, ESR, TSH w/ free T4 if TSH abnormal, urinalysis, anticardiolipin (1:38 IgM), ANA,
dsDNA, toxoplasma IgM v IgG, ACE for sarcoidosis, Rheumatoid Factor.  All results were normal unless
included by results above.  The IgM was out of range for the anticardiolipin but she said that wasn't of any
concern.  After a lot of tests and several more visits, including visits with a rheumatologist, cardiologist,
and pulmonologist they worked him up for possible sarcoidosis.  Thoracic radiographs were taken and a
gallium scan was performed which resulted with uptake in the salivary glands.  They then performed a CT
scan but could not identify any areas of the lungs to biopsy for sarcoidosis.  He was found to have a nasal
polyp from the very first MRI and so he is supposed to be scheduled to have that removed and analyzed
for any signs of vasular disease or sarcoid.  He also had pressures tested in both arms to compare
differences.  The first time the test was run there was significant difference between the two arms so the
technician ran it two more times with similar results.  After the vascular doctor saw the results he had the
test rerun which was then normal.  He said the initial test must be due to faulty equipment and said there
was nothing to worry about based on the other test performed.  He had ultrasound of his carotids which
were normal also.  The initial pressure differences in his arms is still of concern to us.  The neurologist at
the Univ. of Iowa is still unsure of a diagnosis although she seems hesitant to say he has MS.  She says
she wants to wait for the results from the nasal polyp.  We are very frustrated at this point.  He has been
prescribed amantadine for the fatigue but does not want to take anything until he knows more what is
going on.  He would like to get another opinion if possible and, therefore, does not want to risk taking any
medication for fear it may mess up the results of future diagnostic tests.  He is normally a very active
person, by that I mean he likes to be doing things all the time, he is under a lot of stress and has been for
some time, and he also seems to be somewhat depressed which is understandable to me after all the
frustrations with finding out what is going on.
Within the past year he has shown all the symptoms mentioned throughout the history above in
addition to the following symptoms.  Joint pain (esp. elbows, knees, and fingers), tight feeling in calf
muscle of affected leg, headaches (severe at times although they seem to be less often lately), there was a
period of time where he felt light-headed so we checked his blood pressure at home and it was elevated at
times but not consistently, numbness over left jaw line and on back of scalp on left side (occurred one time
lasting for a few days and hasn't had since), tinnitus (severe at times), red spots which appear and do not
seem to go away (usually pea size on schinns, neck, feet), he had one episode of a vessel on the top side of
his forearm which was raised and hard when palpated - it stayed this way for approx. 3 days and then was
gone.
We are desperate for help at this point and are willing to get another opinion if you feel it will
help.  I don't know where else to turn from here and would appreciate any help in direction.  I apologize
for the length of this message but I felt it was necessary to give a complete history in order to receive the
best suggestion for our next step.  We would have to make a long trip to come to Ohio, but if you feel we
could find some answers it would be well worth it.  Thank you in advance for any help. CS

by cs, Jun 22, 2000 12:00AM

I apologize for adding this onto another post but I have been trying to post a question for weeks.  This is a long but complete history of my husbands problems.  Thanks in advance for any comments you have, especially since I had to post on another question!  We are desperate.
  My husband is a 30 yr. old male who has shown multiple syptoms (symptoms) and seen several doctors with a
diagnosis at one point of monosymptomatic demyelinating disease.  Early in 1999 he began feeling
generally fatigued and ran a mild fever for a few days (came and went).  He didn't think much of this and
did not see a doctor for it.  Also, in early January he went to a local optometrist for a general eye exam for
his glasses and the optometrist noticed a hemorrhage in the left eye.  He referred my husband to an
ophthalmologist nearby who confirmed a retinal hemorrhage due to multiple venous occlusions of the
vessels which were described as being telangiectatic.  He suggested that we wait to see if it would resolve
on its own.  After he was rechecked the hemorrhage had not resolved and he suggest we see an
ophthalmologist at the University of Iowa that he knew.  The visit to the Univ. of Iowa occurred after the
following events.
A few months after the initial feeling of fatigue and mild fever he was shingling the roof of a
house and during the night (he woke up with it in the morning) he noticed numbness in his right
fingertips.  He also noticed a large reddened area that appeared to be an insect bite or bruise on his left
arm, but he did not recall being bitten by anything or hitting his arm that day.  This was somewhat
concerning because he doesn't bruise easily.  The numbness in the right fingertips continued and he went
to see a general practitioner for it.  During the physical they discussed the retinal hemorrhage and the
doctor decided to run an ECG which was abnormal (I'm not exactly sure what abnormality was noted) and
the doctor said it could be from a possible mild heart attack at one time.  He sent my husband to a nearby
hospital to have an echocardiogram performed just to check everything.  The echo was normal and no
further tests were performed to double check the original abnormality.  He has been known to complain of
chest pains off and on (approx. every 2 months or so), not a pain like tightness but a sharp pain.  His
sternum will also 'pop' once in a while (a deep/loud 'thunk') and it will be really sore sometimes.  He does
smoke approx. 2 packs/day.  An MRI was also scheduled at the hospital due to the numbness and vascular
concerns.  The results showed 4-5 white matter lesions, some were located periventricular and I believe
most of them, if not all, were on the left side of the brain.  From here he went to a local neurologist who
performed an EMG on his right arm which was normal (tested for carpal tunnel).  Because of the wait
required before more tests could be done we decided to go to Mayo Clinic taking a chance at a walk in
appointment.  He got to see a neurologist there that day who performed another MRI with similar results
and also the following tests with their results:  Phospho/Cardiolipin AB - IgG phoslipid Ab = neg, IgM
phoslipid Ab = pos. 1:16;  L.P. Observation - Initial pressure = 190 mmH20, Interspace = L4 - 5, Quantity
= 10ml spinal;  CSF IgG Index = 1.09 index, IgG (CSF) = 9.55mg/dl, Albumin (CSF) = 40mg/dl, IgG (s)
= 982mg/dl, Albumin (s) = 4480mg/dl, IgG/Albumin (CSF) = 0.24 ratio, IgG/Albumin (s) = 0.22 ratio,
Synthesis rate (CSF) = 26.99mg/24hrs, unique CSF bands = 2;  CSF tests - Glucose (CSF) = 54mg/dl,
Protein Total (CSF) = 86mg/dl;  Body Fluid Cell Count - Fluid type = CSF, Gross Appear. = clear, Total
Nuc. Cells = 10/ul, Erythrocytes = 0/ul, lymphocytes = 92%, monocytes = 8%.  These were the test results
run.  The neurologist seemed unsure at this point of a diagnosis of multiple sclerosis or some sort of
vasculitis.  I believe he also did an estimated Sed. Rate which was normal.  We informed him of the
retinal hemorrhage and he seemed concerned so he set up an appt. with their ophthalmologist.  This
exam, I feel, was not very thorough compared to the exam performed by our local ophthalmologist,
however they did not see the retinal hemorrhage and, therefore, treated him as if there was not one.  This
was disturbing because we had it rechecked later at home and it was still present and later had to be
lasered.  I am concerned that the finding of the hemorrhage may have led the Mayo neurologist in another
direction.  The neurologist sent my husband to a different neurologist at Mayo who worked more
specifically with MS patients to get his opinion.  This doctor did not examine my husband, a doctor
visiting from Canada under supervision of the neurologist is the one who performed the exam.  The doctor
we were referred to did not even spend more than five minutes with us the whole time and then diagnosed
him with monosymptomatic demyelinating disease based on the MRI results and symptoms (at this time
the CSF results were not back).  He said we would need to wait and see if he has another 'episode' or
'attack'.  The only problem is his symptoms have never gone away and they do not get worse like people
describe with exacerbations.  His symtoms are there 95% of the time every day and he feels they are very
slowly progressing.  I don't physically see progression of his physical neurologic symptom (foot slapping
the ground after walking a while- not real obvious), but he feels more fatigued.  He has horrible mornings
where he doesn't want to get up and then at bedtime is wide awake and cannot sleep, which is likely
contributing to his fatigue.  He says the numbness comes and goes within the day and he will feel pretty
good one time and a few hours later feel like he won't make it through work.  His job involves operating
heavy equipment for a county road department.
While he was at the Univ. of  Iowa for his eye we decided to get a second opinion from a
neurologist there.  A thorough neurologic exam was performed and the test results from the CSF tap were
provided to them.  They ran several additional tests: CBC/chemistries, B12 w/ IFBA, Folate, Rapid
Plasmin Reagin, ESR, TSH w/ free T4 if TSH abnormal, urinalysis, anticardiolipin (1:38 IgM), ANA,
dsDNA, toxoplasma IgM v IgG, ACE for sarcoidosis, Rheumatoid Factor.  All results were normal unless
included by results above.  The IgM was out of range for the anticardiolipin but she said that wasn't of any
concern.  After a lot of tests and several more visits, including visits with a rheumatologist, cardiologist,
and pulmonologist they worked him up for possible sarcoidosis.  Thoracic radiographs were taken and a
gallium scan was performed which resulted with uptake in the salivary glands.  They then performed a CT
scan but could not identify any areas of the lungs to biopsy for sarcoidosis.  He was found to have a nasal
polyp from the very first MRI and so he is supposed to be scheduled to have that removed and analyzed
for any signs of vasular disease or sarcoid.  He also had pressures tested in both arms to compare
differences.  The first time the test was run there was significant difference between the two arms so the
technician ran it two more times with similar results.  After the vascular doctor saw the results he had the
test rerun which was then normal.  He said the initial test must be due to faulty equipment and said there
was nothing to worry about based on the other test performed.  He had ultrasound of his carotids which
were normal also.  The initial pressure differences in his arms is still of concern to us.  The neurologist at
the Univ. of Iowa is still unsure of a diagnosis although she seems hesitant to say he has MS.  She says
she wants to wait for the results from the nasal polyp.  We are very frustrated at this point.  He has been
prescribed amantadine for the fatigue but does not want to take anything until he knows more what is
going on.  He would like to get another opinion if possible and, therefore, does not want to risk taking any
medication for fear it may mess up the results of future diagnostic tests.  He is normally a very active
person, by that I mean he likes to be doing things all the time, he is under a lot of stress and has been for
some time, and he also seems to be somewhat depressed which is understandable to me after all the
frustrations with finding out what is going on.
Within the past year he has shown all the symptoms mentioned throughout the history above in
addition to the following symptoms.  Joint pain (esp. elbows, knees, and fingers), tight feeling in calf
muscle of affected leg, headaches (severe at times although they seem to be less often lately), there was a
period of time where he felt light-headed so we checked his blood pressure at home and it was elevated at
times but not consistently, numbness over left jaw line and on back of scalp on left side (occurred one time
lasting for a few days and hasn't had since), tinnitus (severe at times), red spots which appear and do not
seem to go away (usually pea size on schinns, neck, feet), he had one episode of a vessel on the top side of
his forearm which was raised and hard when palpated - it stayed this way for approx. 3 days and then was
gone.
We are desperate for help at this point and are willing to get another opinion if you feel it will
help.  I don't know where else to turn from here and would appreciate any help in direction.  I apologize
for the length of this message but I felt it was necessary to give a complete history in order to receive the
best suggestion for our next step.  We would have to make a long trip to come to Ohio, but if you feel we
could find some answers it would be well worth it.  Thank you in advance for any help. CS

by sjb, Jun 22, 2000 12:00AM

CS, I have waited a very long time also to post my question on this site, I think adding your question to another thread is just going to confuse matters, and it states quite simply 'this
form is for REPLIES and will not be answered by the staff'
I think if you want your question answered you should hang in there, like Im sure many of us have until you get your chance to post your question. Good luck
SJB

by larissa to karen, Jun 23, 2000 12:00AM

Dear SJB,

I also think that the cervical MRI should be next!!   I've never quite understood my own EMG results - - seems when I have the ultimate worse herniations and cord compression, the EMG is just not always reliable for detetecting these problems..  Sometimes they are, but not always.

The next appropriate step in your case sure sounds like a C-spine MRI.   And don't forget, if you won't be seeing your doc within a few days of the MRI, you can certainly retreive your own copy of the radiologist's report as soon as it's done.  Generally, within a to 3 days the typed report of the MRI is done and at least you can go get a copy of this!

PLease get that MRI --- there's a good chance that it will be very diagnostic!!  And take care !!!!!

by sjb, Jul 18, 2000 12:00AM

Thanks for your comments Larissa, I am awaiting an appt for an MRI...there is up to a 1 year waiting list!!! Could be a long wait, and Im terrified of losing my job in the meantime...I'm at 5 months now and still have arm pain, its so strange to have this pain, and not have a clue what the problem is.
All I can do is hang in there :)
SJB

by Margie Re:to patti, Aug 14, 2000 12:00AM

I have had the MRI, CAT SCAN, Physical Therapy, EMS and EMG.
All I can say is hang in there.  Get physical Therapy.
I am on year 4 and have had to adjust to my new life style.
NO LIFTING over 10 pounds.  I cannot rely on my left arm for
strength and it goes numb.  I am currently being considered
for Epidural Steriod Injections.  These sound frightening to me.
If you have any information on them please email me at
***@****

YOU DO need the MRI and Physical Therapy helps a lot!
Good Luck to you!

by kathy@jccteam.com, Aug 18, 2000 12:00AM

Where in your arm does it hurt? Did you fall on your arm?

by sjb, Aug 21, 2000 12:00AM

Margie, Its august now.....been a very long 6 months, I cannot even imagine YEARS of this pain, especially when most days its severe. Still awaiting the MRI. My dr has never sent me to physio, and he has now stopped me seeing th chiropractor. All he gives me is pain pills, and they barely work anymore anyway.
I do so wish I knew where this pain is coming from.
I start back to work Sept 1st, unrestricted duties, and I will be lifting everyday 10-100 pounds. Im very very worried, but need my job desparatly.
Do you have a diagnose? and no, I dont know anything about steroid injections....but I hate needles!! However if it gave me a pain free day I'd go for it I think!
SJB

by P.__, Sep 11, 2000 12:00AM

Hi, Living with pain is something I do on a daily basis. I have what is called RSD (Reflex sympthetic dystrophy) Also know as CRPS (chronic repetative pain syndrome) I have had it for 7 years now. I got it as a result of carpel tunnel surgery. I have limited use of my hands and have also heard that rsd can result from a fall. Please read up on this disorder, not many doctors or nurses are aware of it. I'd write more, but due to my limitations I can't today. Hope you have a pain free day.



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