Author Topic: UCLA Neurologist...Now What?  (Read 3110 times)

lindar

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UCLA Neurologist...Now What?
« on: July 17, 2009, 09:48:11 AM »
I was dx with Sjogren's a few years ago.  My rheumy prescribed Plaquinil.  I began having neurological symptoms last Nov.  After brain MRI and PET scans they found white matter lesions & abnormal right lobe functioning.  I have neuropathy in my feet and hands and attention and memory issues.  My neurologist here believes that my Rheumy here is not treating me aggressively enough for the Sjs. 
My insurance company finally sent me to UCLA medical center.... neurology dept.  I went yesterday.

Basically the neurologist said that my brain lesions were probably from chronic high blood pressure and were a perfectly normal sign of aging (I'm only 56).  Then he asked if I was having "financial problems or had a child move home with an unwanted pregnancy"..... HUH???????? When I said no, everything was fine, he said he thought this was all caused by depression and suggested I go on a strong antidepressant.

I'm sure many of you know how frustrated I am right now.  I really believed that if I saw "an expert" they would know something about the neurological problems associated with Sjs.  My husband and I left there feeling so frustrated. 

My husband said it was like Dorthy going to the wizard of Oz... we had such hopes for some expert help and instead I was written off as being "depressed".

This is the only large medical facility my insurance company will pay for me to go to.  Where do we go next? 

Maybe I would like suggestions... but I also think I just need support from those who have sjs and fight a similar battle.

Thanks!

Chickpea

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Re: UCLA Neurologist...Now What?
« Reply #1 on: July 17, 2009, 09:58:12 AM »
Oh Lindar

You must be so angry about this!  It's good to hear that your husband was supportive and just as shocked as you were by this neurologist's comments.  I have to say that your experience isn't unusual.  I wish it was!  I travelled 150 miles to see an 'eminent' neurologist who told me to 'go home and give myself permission to be well'.  Surprisingly enough it didn't work!  Like you I have white matter lesions on my MRI scans which is why my neuro first thought I had MS.  Nobody ever said anything about them being caused by depression so that's a new one to me. 

I'm in the UK so I don't know about how US insurance companies work but I have a few thoughts: 

Is there another neuro at the UCLS medical centre you could consult?

OR

Could you consult another neuro by email?  I'm thinking of Dr Birnbaum at Johns Hopkins in Baltimore who is happy to hear from SjS people with neuro symptoms.

OR

Could your neuro treat you more 'aggressively' as he thinks the rheumy should be doing?  They could work together on a care plan, as mine have, which involves immunosuppressants.  Lots of us here have experience with these treatments for SjS neuro symptoms and we'd be happy to support you with any advice you'd like.

Thinking of you - Chickpea


Wynter

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Re: UCLA Neurologist...Now What?
« Reply #2 on: July 17, 2009, 10:03:23 AM »
Hi Lindar,

I had the same experience, and you will find many on this website do. My husband and I drove 4 hours to Cleveland Clinic only to have the rheumy tell me I am depressed and have fibromylagia. He prescribed me a antidepressant and told me to go home and get my saliva and lacrimal glands working again. WHATEVER. I don't have the neuro problems, so for now, I am accepting my situation. Since you have the neuro issues, you should persue it more.

I just got my bill from Cleveland Clinic, and it as $6800.00. Insurance covered 80%, so I have to pay 1300.00. Plus the cost of travel which was around $600.00. All that for the stupid doc to tell me I am depressed. I still can't imagine what would cost so much, with the blood tests and stuff. It wasn't worth the $2000 I am going to have to pay.

JenJen

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Re: UCLA Neurologist...Now What?
« Reply #3 on: July 17, 2009, 10:15:58 AM »
Yep...same experience.  ::)

My head MRI was clear, though.  I have had tongue/throat parasthesias since late January, along with muscle twitching.  I went from my local neurologist to a University-based one that is an MDA certified hospital.  I had high hopes that I would at least get some answers on what was wrong.  Instead, I was told I am anxious and depressed.  And guess what?  After 4 1/2 months of being on medication and counseling for that, my tongue/throat problems are still very much here.

Personally, I think any anxiety/depression I do have has not been the cause of my symptoms, but because of them.  It is like I am living in an alternate reality...knowing something is wrong, but having no name for it, all the while others telling me it's all in my head.

I am sorry you are dealing with this as well, but know that you aren't alone with this frustration. (((hugs)))

lesmom

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Re: UCLA Neurologist...Now What?
« Reply #4 on: July 17, 2009, 10:52:26 AM »
I have been to enough doctors now that when I finally get to go to the rheumy (that in now in Aug, not the end of the month..grrrrr) I think if I get the response from the doctor I think the 1st words out of my mouth will be "You have got to be kidding me! I cannot repeat on here what my hubby might say  (&$%##&@*!#^$*) I am so sorry that you are getting that type of treatment. I felt that way from the neurologist I saw. Very pushed off. The 2nd time I saw him I demanded more answers I got some but not all. So if any of you reading this are in the Sioux Falls, SD area- DO NOT go to Dr. Freeman at Sanford Neurology. He's a waste of time and money. If the tests or blood work don't show anything, then you don't have anything. I am learning that I have to demand that I need an answer and they are the doctor that will help me find it or find the doctor that will. We only have so many options in our rural area.
I would think that UCLA is a large enough facility to have more than 1 neuro. I would ask for a 2nd opinion and go from there. Once you get past the shock factor that a doctor would treat you that way, it is a lot easier to be more assertive with what it is you need.
Good luck and heres a big hug,
Leslie

navydad

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Re: UCLA Neurologist...Now What?
« Reply #5 on: July 17, 2009, 12:28:05 PM »
why doesnt this suprise me,, dam doctors,,

lindar

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Re: UCLA Neurologist...Now What?
« Reply #6 on: July 17, 2009, 01:49:49 PM »
Thanks everyone for your support and thoughts.  It is so helpful to know that others understand all these frustrations.

I read some of your responses to my husband.  He was surprised to hear so many have had the same experience.  I am making a renewed effort to keep my husband aware and informed about these issues.  I told him I need to have him as an advocate. 

Chickpea,
I think I could ask the insurance company to let me see another neuro at UCLA however, I'm a little gun shy right now of these guys.  When I told them over the phone today what happened, they were not happy with this dr but asked if I might be willing to go there to see a rheumatologist.... so we will see.  It has to get all kinds of approvals first.

I would love to consult Dr Brinbaum by email.  I emailed him before with some questions but didn't hear back from him but I might try again.  It would be great to have a consult with him because he actually has some knowledge about this stuff.

My neuro doesn't want to treat my autoimmune diseases.  They don't like to "cross over" with these specialties. I wish they would discuss things and work together. 

I would like to know any medications you take that have helped with symptoms.  I think I might bring a list of meds to my dr and ask if I could try these (other than plaquanil)

Wynter...
It is really sad that you had to put out that much money for the consult at the Cleveland Clinic.  I would be in the same boat if my insurance company hadn't agreed to send me there.  I feel bad that my insurance company has to pay all the money they will for that stupid worthless consult.

Jenjen,
I agree that depression is an issue with autoimmune disease.  I readily admit that I struggle with mild depression but I've taken a low dose antidepressant for a few years and really don't have a problem with depression.  It is not a cause of all of our symptoms. It is excactly as you stated.... we know something is wrong but we don't fit into their "little boxes" of common diagnoses so we are left in limbo (or jammed into their stupid little box).

lesmom,

Good luck with the rheumy.... if you find a good one I think they can be very helpful.  I wish that I hadn't been so shocked that I would have had an appropriate response for the doctors there.  Thanks for your support.  It took me until late morning today to really get angry... that is when I called my insurance company.  The insurance company is sending me a complaint form that I can file.  It probably won't do anything but make me feel better but that is what I need right now.

Thanks again for everyone who offers support here.


navydad

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Re: UCLA Neurologist...Now What?
« Reply #7 on: July 18, 2009, 07:53:49 AM »
My neuro doesn't want to treat my autoimmune diseases.  They don't like to "cross over" with these specialties. I wish they would discuss things and work together. 


thats the problem,, they never seem to get on the same page,, but I guess when you see a ton  of patients a day its kinda hard

anita

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Re: UCLA Neurologist...Now What?
« Reply #8 on: July 19, 2009, 06:46:17 PM »
Hi Lindar,

I won't waste time reiterating what others have already said.  I think you get it...that this happens frequently!!  I will say that neurologists that treat underlying autoimmune diseases are rare.  And to find one like Dr. Birnbaum...who is actually both a neurologist and rheumatologist, will be next to impossible (I think he is the only one in the nation to be both specialties--and seek out patients with this very problem).  He is my doctor (and the best there is), but I don't think he will treat you unless you are willing to travel to see him in person.  That's a long distance for you.  You might ask him in your email if he knows someone on the west coast...since he speaks all over the country.   However, I would also suggest that you ask your Rheumy about neuros that cross this line.  Certainly he might know since SJS is not the only autoimmune disease that can have neuro manifestations.  If not, start calling offices and just ask if they treat this type of problem...before you make an appointment.

Hope this is helpful,  Good luck!!!

Anita
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

wordnerd

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Re: UCLA Neurologist...Now What?
« Reply #9 on: July 23, 2009, 12:10:19 AM »
I have a fabulous neurologist in the Los Angeles area.  He treats my brain inflamation and other neuro problems and my MRI is normal.  He thinks it would show up on a brain biopsy but neither of us are prepared to go through with that.  If you want his name and number you can send me a private message.

Sorry you've had such ridiculously incompetant doctors.

*hugs*

-Lauren

sikalot

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Re: UCLA Neurologist...Now What?
« Reply #10 on: July 23, 2009, 01:20:19 PM »
wow i totally understand what you are going through i drove 4 hrs to santa barbara for i dx that i only partially got.

hmmmn i feel like everyone on here is  sharing a brain with me (lesions and all) i mean i never write much about my white matter lesion because i would never thought it was sjogrens related and here you are i dont think your lesions are age related i am 27 with a 2cm lesion seen on the t2 images in the white matter. my neuro does not not not and never has thought it to be an ms lesion but i also had spinal taps to rule this out

where in california are you located i went to samsun clinic in santa barbara my internist really wanted me to see dr.rosenburg but could get me in during my 4 day stay he said he deals with “odd and complicated problems” while i was in the scheduling department 3 people came in to schedule appts w/ him you do not need to be reffered but he is booked so you may have to wait a bit to see him you can also make other appts to see different specialists the same day they have schedulers to do that for you

i have a wonderful neuro here in central ca hes the only wonderful dr i have. very thorough←sp? and personally contacts other specialists i see to try to puzzle everything together is you are close to central ca i can give you his name

i was wondering what did your mri results say exactly if you know

they dont  know what my lesion is they say its either a TIA stroke-low grade glioma which means tumor- or i was born like that.

does any of that sound familiar to you?