This sounds really strange to me, how many neuros on your insurance list because I would try to see different ones! You don't mention a MRI of the C-spine and T-spine. I would think those might be of more significance then a brain MRI with your symptoms minus the ON. Also, on any of these seven hospital visits did your neuro suggest a follow up LP to look for inflammation in your CNS?
Sorry, as far as your brain MRI goes, I can't really tell you much about what all that means. All I can say is it is not so much the lesion load as much as the placement of the lesions. I have all kinds of lesions and am fairly asymptomatic (however that is spelled) and other people will just have one or two that land in prime real estate and cause quite a bit of trouble.
Hope this forum brings you some help with your questions. Joe
Hi Mary and welcome to the forum here. this is a great community to hang out with - definitely better than the neuros you have been seeing.
how on earth can you be hospitalized 7 times in 8 years for exacerbations and not be on a DMD? This makes no sense whatsoever except for some hidden insurance regjulations that reward your doctors for saving the insurers money by not prescribing these drugs.
Can I say your post really makes me fume ? I am muttering all sorts of unladylike words as I am typing this.
We know our brains don't work so well these days, but I want to know what excuse all these neuros can use?
you write ...."With all of the clinical presentations, it seems the doctors feel my mri's are not that bad and neurologists within my insurance refuse to treat me for the ms, although neuros outside of my insurance are willing to treat me for MS IF I pay cash, which I cannot afford. "
not so long ago, before MRI technology became readily available, Neurologists used only their skills with clinical observation to make this dx. Obviously your neuros want nothing to do with thinking and want to rely strictly on the technology.
They should also know that about 5% of MS patients NEVER have a positive MRI for lesions. You sound like one of those lucky few.
And then there is the issue of money and insurance......... when will our health care for everyone not be contingent on the almgihty dollar and focus instead what is best for the patient?
This whole situation shouldn't be - you are incurring more permanent damage with each exacerbation, and that possible could be avoided if they would just give you the drugs.
Ok, my blood pressure is now up and I am sufficiently Pi**ed the more I type. I will think about some ideas for you to pursue after I spend some time cooling off.
in the meantime, welcome again.
I hope you will stick around so we can think through this together.
Hi Joe and thank you so much for your informative post. In answer to your questions, I would like to say that only 2 mri's have ever been done of my c spine and only 1 of my t spine.
The t- spine report is in storage 100 miles away and I need to retrieve it, it is from 2003 and basically said there werent any lesions but there was a subarachnoid cyst somewhere in the middle of my spine, and I cant remember the level.
The c-spine had no lesions.
The last c-spine done this january had no lesions either and basically said c5-c6 had a minute central disc osteophyte complex without significant dural compression. Bilateral foramina appear grossly patent.
IMPRESSIONS: no significant central canal or formainal compromise. the visualized cervical cord exhibits normal contour and expected signal intensity without abnormal enhancement.
A lumbar puncture was attempted by a regular doctor (not anethesiologist)in 2003. He told me that unless I personally allowed him to perform the LP at his office, I would not be referred to any neurologist for treatment of the ms symptoms. So I was trapped in a corner and I went to his office. His receptionist told me he had never done this at his office before. He performed the spinal tap in his office on an examining table and spent over 2 hours torturing me, left 7 holes in my back as he attempted to do it multiple times unsuccessfully and tried to anesthetize me multiple times. I screamed according to my friend in the waiting room for hours, and she said it sounded like a woman in labor. I ended up jumping off the table during the procedure (youre not supposed to move) and then got back on the table for more torture but the doctor quit trying because he was tired of my screaming. So since then doctors have mentioned spinal tap and I will never allow that to happen again......
Hi Lulu and thanks for such a gracious welcome :). I have read other posts on this website and I can say I am definitely at the right place.
I wanted to mention that my last MRI in January showed a punctate FLAIR signal within the left frontal deep white matter measuring 3 mm with additional hyperintense FLAIR focus within the right frontal parasagittal white matter.
Is this consistent with ms diagnosis? I know other mri's have shown lesions, but never more than 5, they are usually 2-4, but never less than 2.
Yes Lulu I have been so exasperated by the doctors from my insurance. The last neuro I saw told me to my face, "ms is too expensive to treat so I am going to undiagnose you.' I was shocked and angered that he did this and left me hanging with no diagnosis. He did a visual evoked potential test while I was in the midst of an ms attack with optic neuritis and he claimed the results were normal but I really doubt they were.
I really believe HMO's are very corrupt and exercise gate keeping and probably give kick back to these doctors. By the way I have BLUE SHIELD calpers access plus hmo, through my employer, the government.
thanks again and I appreciate any further advice or thoughts you come up with.....
Is that the California government? The bankrupt one ... maybe that's why they don't want to spend money on your care.
I have blue cross/blue shield too. And despite my grousing about the copays and deductibles, I have pretty darn good insurance.
Is there an appeal process you can invoke with this hmo treatment? I would pursue that because there is no legit reason for you that I can see to NOT be on a dmd.
Perhaps its time to go public with your problem and seek media attn. or post your story on youtube, like I suggest to another member earlier today. I'm sure your hmo would not like the negative attention.
You guessed right, california government. I am feeling the crunch with the mandatory 24 hour per month furloughs. I think they are skimping on our medical care.
I have gone through an appeal process with the hmo's but nothing ever happens.
After much thought, I have decided to consult an attorney and pursue my options.
Hmo's would not like the negative attention, so I am considering taking my story to the media. This is something I have thought about doing in the past and have not entirely ruled this out just yet.
Hi Mary. I also live in California and know there are ways to cure this problem. It's not easy, but it can be done. Give me a little time and I will get the tele#'s and contacts to help you.
My insurance is good, but I've helped others navigate their way through the HMO baloney. The neurologist who took away your diagnosis needs a public flogging. Navigating your way with the HMO's is like beating your head against the wall. It is infuriating. But I have a few tricks up my sleeve that can make them back down and roll out the red carpet for you.
The radiologist who stated in his report that that the examination is "benign" is a knucklehead.
If you are comfortable, private message me with the city you live in.
I LOVE a challenge!
I'm ready to kick some booty and take numbers. :-) Your story infuriates me. This kind of crapola is what we are instore for if our government becomes involved in insurance.
The name of this game is to dodge treating the patient, duck, throw up smoke and mirrors, and defeat the patient. This behavior keeps the dollars in the HMO' pockets.
Thanks so much for your posts, I appreciate it.
I wasn't sure how to private message, but I live in the city of Inglewood.
Hi Mary. I will "PM" you so we can talk off forum. You will then be able to respond in private as well.
Look at the upper right hand corner of this page and you will see Inbox Log Out My Shortcuts just below the MedHelp box. Click on the Inbox, there is a message waiting for you. :-)
Karen, I'm sorry, but this kind of insurance crap is what I've received for the past 17 years as a heart patient without insurance. I am all for a government option on healthcare. I have been uninsureable for many years and denied appropriate care for as long as I can remember, and my memory is getting shorter and shorter since the MS diagnosis now too. Many people on the forum seem to have insurance and I am glad for them. I feel for those who do not have insurance and I know a bit of what you're going through. There will be similarities in all our stories. They are worth being angry over. Each and every one. Now if we could just target that anger in a way that gets us somewhere besides around in circles, chasing our tails.