Am I out of line - Multiple Sclerosis Message Board

duttin · 04-01-2006, 03:36 PM

After a recent attack,heat induced I was left with the ability of not being able to use my right arm or leg,bladder problems and visual distortion.This lasted about 12 days,repeated calls to neuro and none returned,except to verify my appointment on Monday.
I am still with no diagnosis,I called the Cleveland Clinic MS Mellon Institute and they give me an appointment in 3 weeks.I talked to a physican assistant there.All my recent medical records are on file there because my neuro sent me to a neuromuscular specialist,stating that leg cramps and spasticity is not a clinical symptom of MS.
Well every possible neurological and immune disorders have been ruled out except MS.The spasticity is just one of the many symptoms I have.I'm at my wits end.I know MS can take years to diagnose.
This neuro won't even get updated MRI's.I've had a LP.Myelin Basic Protein is really high,which shows an attack of the central nervous system and there is one lesion on past MRI.
See neuro optimologist on tuesday,made that appointment myself to.I got new glasses in January and now they are not strong enough.
Am I out of line scheduling these appointments,should I tell the neuro.I really like him,He cares about his patients,I think MS is just out of his league.Any imput would be appreciated.
Toni

lestoby · 04-01-2006, 04:19 PM

Thank goodness you must have a PPO like I do!

I made my own appointments with an OD, ENT, and I now have an appt with an MS specialist at UCSD. The neuro that my GP sent me to was nice, but not all that helpful.

I still do not have an official dx, but I am still searching. If I do not have any success or more testing done with the MS specialist, then I will give up and let time take its toll. The only testing I have had done is CAT Scan and MRI. CAT Scan showed "infarct" and MRI showed 2 lesions.

I saw an OD, because my eyes are driving me crazy. Result, no optic neuritis, but vision rx got worse and blind spots increased.

I saw an ENT, because of the osteoma and sinusitis that appeared on the MRI and because the OD recommended I should see one. Not much accomplished here, but compared to the lesions on my brain, I'm not too worried about the osteoma, unless it starts getting bigger.

I have not had any of the other neurological tests done that others describe on this board. I was just told "I don't think you have MS" by the neuro and sent on my merry way. So, on my merry way I went to make a bunch of other appointments. If it wasn't for my mother's constant nagging to find a new neuro, I probably wouldn't have done so, because I really did like the guy. So, during mother's recent visit, I placated her and I called the National MS Society and got a referral for 3 local neuros and I got an appt (May 1st) for the doctor I really wanted to see.

You're lucky you live near the Cleveland Clinic. I've heard a lot of "raves" about them on this site.

duttin · 04-01-2006, 06:11 PM

Lestoby,
Aren't mothers wonderful,mine lives 2 blocks over.I enjoy having her around.
I have had so many test latly,mainly blood,every thing points back to ms.My first attack was in 1998 I lost my vision,couldn't speak,couldn't use my hand or rt leg.Symptom free until 18 months ago.Neurosurgeon told me in 1998 I had ms symptoms.I ignored him I was young and didn't really know anything about MS.
This time symptoms havn't left and can't be ignored.
I have had MRI--6 months ago--1 lesion
2 EMG/NCS---radiculopathy--could be MS related
EMG/NCS---deep muscle and nerve--negative for myopathy
EEG ---no epilepsy or migraine
LP---high elevation myelin basic protein---attack happening
positive romberg
absent reflex entire rt ankle
minimal reflex in rt elbow
attacks right side of body---synonamous with MS
Tested for---lupus,lyme,sarcidosis,sjorjens,myopathy, neuropathy,vitamin b12,thyroid,fibro,arthritis,rheumatory,c ancer,ALS-----all negative

Family Dr. says to pursue it.No my insurance stinks,but I'll deal with that later.
The Cleveland Clinic is awesome,they listen and the quality of care is outstanding.I'm a few hours away,but worth it.
Keep us posted on your journey

Toni