Update and more questions

[tcobrien]

After many months of dead ends and no real answers - a few new issues have arisen.  

1. Microcytosis - After a bad spell of arrhythmia and PVC's the ER ran a blood test - and mentioned possible anemia.  Hematologist confirmed Microcytosis due to most likely Chronic Disease.  No Sed Rate to speak of, so rheumatologist would be of no help?  And to go back to the neurologist

2. Muscle loss – left foot all of the flexor digitorum brevis muscles are gone.  Neurologist noted one missing in April and said most likely born w/o or loss due to injury.  6 months later they are all gone.  Large toe flexes independently of others.

The questions are;
1. Can you have an inflammatory immune mediated disease w/o sed rates? If not can the sed rates just be hit and miss – not elevated when they checked the blood?
2. Does microcytosis fit into any of the immune mediated diseases with symptoms that fit mine?
3. If the muscle loss is just an effect of the peripheral neuropathy, what can be done to reduce any additional loss?

Recap of Tests and findings:
MRI – Brain, C, T, L all clean.
LP-Elevated Protein, else clean
Lyme, MGUS, Lead, Glucose, Cytology, SEP, VEP, chest xray – all negative/normal
Only 2 oligo bands
Waiting on results from Athena Diagnostics peripheral panel – anti-sulfatide/anti-hu/anti-mag
Nerve conduction study – absent plantar response bilat
Needle test – one run of fillibration
Microcytosis – W/O anemia

Primary Symptoms:
Pain in arms/legs – aching 4 ½ years intermittently lasting 8-36 hours
Intention  Tremor – 6 months sudden onset
Sensory loss in hands and feet – Novocain numb in feet – glove stocking distribution
Chronic Fatigue – coinciding the pain in arms and legs
myoclonic jerks
facissiciations in legs and feet

Thanks for all of your help (and support :)
Tim

[Lulu54]

Tim,
If I remember this correctly, the presence of the O band in your serum along with in your CSF rules out MS.  MS doesn't show in both - that's why they have to take the blood sample at the same time of the LP to compare.  Sorry if this is a repeat of previous info - I should be off this and in bed by now!!

Keep us posted,
Lulu

PS - you might post the question about the doctor as a separate post - someone might know the clinic there.

[tcobrien]

Thanks Shelly - Doni and Lulu!

They have ruled out many different things: Lyme’s, Diabetes, Lead poisoning, MGUS / Multiple Myeloma, Fibromyalgia, any CNS tumors, brain issues, iron or B problem.  Back has problems, but the areas of degeneration and places where cord touches spine show no increased signal or destruction.  

They say it is not suggestive of MS, ALS, or a MND.
(Sorry although Oligo bands were 2 - interpretation was only 1)
(2 in CSF and 1 matching in serum) - However protein was slightly elevated.

I am starting to wonder if it is a type of CIDP.  Hopefully the test from Athena will shed some light.  They test for specific antibodies that trigger myelin / axon destruction.

Has anyone had experience with Dr. Natan Shaoulian from Cedar Sinai?  He has a clinic in LA - trying to find a second opinion before 2009 - my insurance might change back to HMO :(

Thanks again.  You guys are great!
Tim

[sllowe]

Hey -

Welcome back! Well, it's been awhile since we've seen you and seems like you're still hanging out there in the unknown.

I'm hoping someone can look into this for you here - I'm thinking Sherry - Essidipity? You got any thoughts for Tim?

And, do you know what has been ruled out Tim?

Those diseases that are possible with:
       LP-Elevated Protein
       Only 2 oligo bands

Don't be a stranger. Hope we can get you some more info on this.
ttys,
Shelly

[doni54]

Hi Tim,

Like Lulu, I can't answer the medical questions, but it does sound like you are having some MS symptoms.

Before my journey of seeking a dx started, I never understood how hard it was to dx MS.  I've learned so much from this forum, and read of so many here who have had every test available and still can't get a definite dx.  

It is a sad thing, that in this day and age and in this great country that so many people deal with illness and cannot be dx, therefore can't be treated for their symptoms.

I hope that you will have a dx soon and start to get the treatment you need.

Take care,
doni

[Lulu54]

Hi Tim,
I am definitely NOT the medical person here and can't offer much commentary on your symptoms. I just want to let you know I had read your post and am sure someone more knowledgeable will be along to help answer your questions.   You certainly have a full deck of symptoms to play with there - it sounds to me like you are thinking MS, am i right? I'm sorry you are struggling with this, Lulu