Need help finding decent Neurologist in Northern Calif.

[copper]

My first posting to any such site - here goes. I am desperate. I need to find a Neurologist or ? physician that can put all the diagnostic clues together so I can get a formal diagnosis, treatment, and if need be, disability!

My symptoms began a year ago (March 2007) and by September 2007 I showed marked classic symptoms of peripheral neuropathy. I suddenly could not walk normally, had increasing leg and arm weakness, spastic walk, incredible physical and mental fatigue, cognitive dysfunction, pain in my lower back that burns and has since spread from a localized area to the entire lower back, hyper-sensitivity to cold (fingers turn blue), tingling all over my body but especially arms, legs, and lips, now a spastic cramping in my arms, legs, butt muscles. My legs feel like blocks of wood / ice.

So far, I have three specialists and a general physician / internist and no final formal diagnosis. From March 07 to September 07, the Infectious Disease Doctor told me I have antibodies for Herpes, Pneumonicoccus and thought that I was having reoccurring meningitis-like attacks. I have low IGG and IGA and he said I have Common Variable Immune Deficiency Syndrome (CVIDS). When my arms and legs stopped working, he suggested Gamma Globulin infusion.

The Rheumatologist I am also seeing said no I should not get gamma globulin and that he doesn’t think I have CVIDS. He thinks I have a neuro-muscular disorder so I was referred to a Neurologist.

The Neurologist spent 4 months doing 3 things – an EMG, a brain MRI, and a spinal tap. He then said he did not think I had MS or Parkinson’s - turns out that is the only thing he could think of - so he told me I should see a Chronic Fatigue Specialist. Regardless of the test results, my physical condition has continues to deteriorate.

So I went to Stanford Immunology yesterday. It took 3 months to get in. Net result - They do not think I have CVIDS but are testing to see if I have any immune dysfunction. Turns out my Internist didn’t ask them to look at anything except this ONE issue – gee thanks a WHOLE LOT! The Stanford Immunology Clinic hs refered my to a virologist but it will be 7 more weeks minimum before they can see me. I can’t get in to see a neurologist for at least 3 months. Great place but ………….. Maybe I just need to camp out in each clinic???

None of the physicians have been seeing haveeven thought of Transverse Myelitus even though I have all the symptoms and it is slowly getting worse and worse in terms of the pain in my back and the loss of leg and arm function……. This has not been a rapid degeneration – rather a slow and increasingly profound debility but now I am down for he count and I am afraid I will never be able to recover. I am most afraid of breathing and swallowing disability - I have had 3 episodes of forgetting how to swallow and two where I could not remember how to breathe. Each episode lasted for maybe 5 seconds and scared me to near-death but the Doctors scratch their head and point me off in some other direction. Meanwhile I am now off work (last 3 weeks) on sick leave because I can’t work and I am terrified that my condition is going to worsen to some crisis level while the Doctors sit around shrugging their shoulders. I need to move aheadon disabilty paperwork (whether permanent or temporary) so I don't loose my job and then bennefits but I need a diagnosis.......

Does ANYONE know / can name a physician in Northern CA that you recommen will be be able to review my medical records, do whatever tests are needed, look beyond just assessing for MS and Parkinson’s and tell me what I have???. If I get a name I will demand my Internist get me an urgent referral. Someone that can add 2 and 2 and get 4. I am desperate!

[cheesecake]

Margaret "Peggy" Portwood in Sacramento is an excellent physiatrist. I saw her pre-SCI after a work related injury. She didn't write me off as "crazy" but rather found that I had very advanced and severe arthritis into my femur and thus good reason for pain. She also treated me post SCI.

My neurologist was Harley Schear from San Francisco. I believe he still has a practice open, good guy although a bit gruff. He found my cerebral bleed that everyone missed for 18 months. He does not toss in the towel easily.

Hope this helps.

[hlh]

There is an excellent department of Neurology at UCSF. While it can take a substantial amount of time to get an appointment, if your doctor tries to target your referal to a specific physician, you may be able to be seen sooner. Great diagnosticians include Dr. John Engstrom (spine/peripheral nerve specialist) and a newly hired, seasoned neurologist Richard Cuneo (general neurology)

I would not go to a physiatrist to try to obtain a diagnosis for a systemic, and possibly neurologic problem.

You did not mention if the results of any of your neurologic tests are abnormal (EMG, MRI, LP). You should make sure you have copies of all of those tests, and all lab results, when you visit a new physician. Certainly, be sure that a B12 test and thyroid function tests have been done already.

While it sounds a bit aggressive, the best way for you to be seen by a neurologist quickly is to actually walk into the emergency room of your hospital of choice (don't quote me on this...). If either UC Davis, Stanford, or UCSF is closest to you or has more of your records, I would recommend going to that place. Take records with you, and urge the ER physician to have the neurologist come do an urgent consultation. Then do not leave the ER without a timely scheduled follow-up appointment. If the neurologist is quite concerned by your exam in the ER, sometimes you are even admitted directly for further work-up.

Good luck.

hh

[SCI-Nurse]

hlh,

Physiatrist = physician specialist in physical medicine and rehabilitation (PM&R).

What is being discussed above is a physiatrist. They are a very appropriate physician to see for diagnosis of a neurologic problem, and they are much more expert in management and rehabilitation of disabilities than a neurologist.

In my experience most neurologist are interested in the thrill of the hunt (finding the diagnosis) but loose interest when a chronic condition that cannot be easily cured is discovered. I know you are a neurologist, and some of my friends are neurologists, but if I had a physical disability, I would be looking for a good physiatrist for my long term management, not a neurologist.

(KLD)

[hlh]

Forgive me if my response seemed inappropriate. That was not my intent. And I completely agree that unfortunately a neurologist is not usually the appropriate physician for following a chronic problem such as spinal cord injury (unless they are a rehab neurologist).

My point was to give her a recommendation for a doctor to give her a diagnosis. It seems she does not have one yet. I didn't think she should give up yet on not being diagnosed, and accept just symptomatic treatment.