any experience with kaiser permanente and MS

[cyng3468]

Hello.

I am new to this forum and have a question for all of you.  I live in California and have Kaiser Insurance.  I have had many problems with Kaiser on getting proper diagnosis and have actually had several of my doctors disagree with each others diagnosis of my symptoms and test results. I have 5 brain lesions and they have not seen any spinal lesions however they only have 1.5T MRI's and even 1 of my doctors said she didn't know if it was going to show a spinal lesion let or even all the of brain lesions that are possibly there. I am going crazy because I am getting worse and they will not start me on a treatment program.  Has anyone had any experience with Kaiser and MS?

Thank you so much for any help.
Cynthia

[supermum_ms]

Hi Cyn,

Well i think I actually do get the picture and i am going to recommend you seek the opinion, of a neurologist that specialises in MS. That's not to say MS is the only thing that would fit on your list of possible causes but your symptom type and symptom pattern, changing MRI's and clinical Romberg and hyper-reflex etc, would definitely put MS quite high on your list and an MS specialist would probably be better in working it out.

With your lesions location mentioned "subcortical temporal areas and brain stem." subcortical is pretty common to migraines and isn't one of the specifically identified MS locations for diagnosis using the Mcdonald criteria, but because you now also have a "brain stem" lesion showing on your MRI, a dx of migraine would not explain the brain stem lesion at all. Though those lesion locations 'could be' explained by MS, and Migraine would drop lower on your list of possible causation and conditions like MS would usually be higher, simply due to the brain stem lesion.

It would be easy to interpret "My neuro said they are showing lit up before and after contrast. "  as meaning, every one of the lesions visible on your MRI enhanced with and without contrast but that isn't actually what happens. Lesions don't 'light up' without contrast, it's the actual contrast that makes demyelinating lesions light up like Christmas tree lights. So i would have to assume there is a possibility of misunderstanding or miscommunication in what was said.  

Could your neuro of simply meant, there is no difference in lesions enhancement even with contrast?

At the end of the day, something is definitely causing the brain lesions and still is causing new lesions to develop, and that from my way of thinking, would definitely warrant getting the opinion of a neuro that specialises in MS.

Cheers..............JJ

[cyng3468]

Thank you for your response.  I am not trying to be vague just trying not to write a book but maybe being more specific will help me get some answers. My neurologist has stated that the lesions that were showing up a few years back are not located in what she considered "typical" areas for MS.  They have shown up as enhanced lesions but were in areas that were not typical for MS. My new lesions are showing up in left and right subcortical temporal areas and brain stem.  They all are showing up as hyperintensity but the MRI does not state that there were any changes to that after the contrast.  My neuro said they are showing lit up before and after contrast.

I have been experiencing what I call episodes of crazy symptoms for about 3 - 4 years now.  I call them episodes because just as quickly as they come on they seem to go away after a couple of months until they come back again.  Some of the symptoms however never go away like numbness in hands, feet, leg weakness and balance issues.  Each episode is a little different but I have had the following symptoms in the past or currently (due to the fact that I am in the middle of a episode now).  Those symptoms are; extreme sensitivity to heat (not only do I become more fatigued and lose balance easier I also get bee sting like sensations in my torso area mostly in the back but it does reach around to the front as well),  tingling on the left side of my face and today my left side of my tongue, dizzy spells, blurred vision and this time vision changes that are like I can't see clearly, bad headaches, complete exhaustion, body feel's so heavy especially legs, bladder issues, bowel issues (only two separate episodes that lasted about a month but good now), ughghgh.. just too much to try and recall right now, but I am sure you get the picture.  I have shown to be positive for Romberg and most times hyper reflexive. I have had my eyes looked at but they didn't find optic neuritis which is baffling to me since I only have issues with my eyes during these flare ups.  I am not saying I have MS but I do believe that there is something going on that they are not catching and therefore I just keep getting these attacks and during them I feel like I am dying but then when they finally subside (at least for the most part) I feel like I can live again.  Thank you for all your help in assisting me with trying to figure all of this out.

Cyn

[supermum_ms]

Your welcome!

I'm not exactly sure what you're meaning "My lesions at first were not in "normal" areas for MS but the latest one's I guess are more "normal placing" for MS."  if what you are saying, is that you have MRI evidence of new lesion's developing in repeated MRI's and these new lesions are in the specifically identified MS locations. Then that would minimise what else it could be, so i'd think it would warrant a fresh opinion, if your MRI's are becoming more suggestive of MS. Still don't forget that MS is more than just what the MRI's show, do you know what clinical signs of neurological causations you have, as well as where the lesions are located?

Again i'm not exactly sure what you mean by "if the lesions show up as increased signal without contrast does that mean they are not MS related?" lesions are visibly different with contrast, than they are without contrast, but even though its not what i was talking about, i think the answer to your question would still be a no, that wouldn't mean they are not MS related but it doesn't do much to identify them as MS lesions either.  

'Contrast' will make demyelinating MS lesions, if they are new or even older lesions still under attack, light up like Christmas tree lights on the MRI. The contrast basically highlights the blood brain barrier has been breached and in general other conditions that also cause lesions eg migraine, vascular, TIA's etc basically do not do that.  

Cheers......JJ

[cyng3468]

Thank you so much for taking the time to write a response for me. I think I will be trying to get a second opinion for there seems to be great debate over what is causing my symptoms and test results. Good idea.  My lesions at first were not in "normal" areas for MS but the latest one's I guess are more "normal placing" for MS.  You did mention something about them lighting up with contrast or not.  So if the lesions show up as increased signal without contrast does that mean they are not MS related?  

Thanks

[supermum_ms]

Hi Cynthia and welcome,

I don't personally have any experience with Kaiser but i wanted to point out, that MS has many mimics and the MRI is only one aspect of the evidence needed to dx. MS can be quite complicated to dx and sometimes it will take years to work out the correct dx. Lesions are related to other conditions too, so when looking for lesion evidence more suggestive of MS, the lesion location is important, as is if any of the lesions light up with contrast, size etc.

There are some sx's that are more suggestive of MS, still keep in mind that a lot of sx's are not exclusive to MS but clinical signs of neurological causation are quite different, because these signs are object evidence of damage regardless of MRI evidence. eg of clinical signs - Nystagmus, clonus, hyper-reflex,  positive Romberg etc  

I would suggest if you do have clinical signs of neurological disease, as well as MRI evidence of brain lesions etc, that you consider gathering your test results and getting the opinion of someone outside your health system, if you are concerned with the contradictory information your getting within your health system.

Cheers..........JJ        

[Guitar_grrrl]

Hi, there. I'm not with Kaiser, but I have an acquaintance who was diagnosed at Kaiser Santa Clara with her first onset of optic neuritis.  She had no enhancing lesions on her MRI (I don't know how many), and she had a lumbar puncture that revealed 4 O-bands.  Your neuro may be waiting for some time to pass to reassess MRI or if you have a relapse.  It can take a very long time to come to a diagnosis, as you've probably read in these pages.