disappearing and reapearing lesions

[fuzzydogs]

approx. 21/2 yrs ago I had a severe bout of vertigo accompanied by nausea while sitting on the beach with friends, the first episode was the worst, I had to go sit in my car with the AC on and then went home and slept, from then on I would have bouts of vertigo walking up and down steps, just turning over in bed, etc, I went to physical therapy, ear nose and throat drs, and finally was recommended to go to a neurologist, as time went on the symptoms lessened, (about 2 months) the neurologist did one mri w/o contrast and the lesions were present, she did a second one with contrast about 3 weeks later and she said the lesions were gone.  she said I probably had a virus on the brain and I could go home I didn't have MS and everything was fine..in July of this year I got thrown from a horse, and about a week or so later my bladder started causing be problems, I didn't know what it was at first, painful sex, a hardness in my bladder area, I went to my obgyn , nothing, I went to get an colonoscopy, nothing..finally went to a urologist and found out I had two things and am still dealing with it, intercystial cystitis and detrusor sphincter dyssynergia, talked to the dr about my previous issue with lesions on the brain and asked if it could be related, no one can give a definitive answer, did two more MRI's with and w/o contrast I have lesions on the brain..not a lot according to this neurologist (new neurologist) but they are present. did a spinal tap that was grueling and the spinal fluid is all clear. so, the thought is still "not sure if I have MS or not" and all they can tell me is to wait and see and get more MRI's in a few months,, this just seems insane to me, to have something and not be treated. has anyone else had this experience and what are your thoughts on this?

[sllowe]

Ever hear that old saying...If I had a brain I'd be dangerous? Well, that's how I"m feeling....lol

The hypothetical case of the disappearing lesion was inspired by Sarahsmom46, Julie.  Twopack Mary must be on my mind today. The page Mary inspired was weak vs feeling weak...

[sllowe]

Uh...that's *taught :) Nothing like good old Drain Bamage kicking in full gear!

[sllowe]

Aaaaaaaah I think you'll very much enjoy this read in our health pages about the "Disappearing Lesion' written/tought by our very own Quixotic, inspired by our beloved TwoPack, Mary who has since passed, and all I did was make it into a fun way to learn - So it's written up as a "mystery."

Enjoy the read, and best of luck w/Penn. I hope you know what you are battling very soon.

The case of the Disappearing Lesion...
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Lesions---Can-they-Disappear-A-Hypothetical-Case-Overview/show/566?cid=36

[PastorDan]

Mark that down, too.  Overwhelming fatigue is another common MS symptom.  And a symptom of many other things too, of course.

I've been on this roller coaster we call Limboland for about 5 years now.  I am still - day by day - learning how to deal with the idea that I may never receive a diagnosis that could open the door to treatment of more than symptoms.  Just this afternoon, I came home early, with something terribly wrong (again!) for which I don't know whether to go to ER, Behavioral Health, or bed.  It's maddening, but I will just take it a day at a time again.

Good luck, and God bless.

[fuzzydogs]

thank you...I guess that's all I can do..in the mean time, it difficult to work with the symptoms I have and im on short term disability...I NEED to go back to work..they are trying different meds to try to help my bladder issue..its quite painful and tiring..im exhausted all the time..

[kwarendorf]

Hi FD-

I will second what has been said. The diagnosing of MS can be a long and frustration process. It is not out of the ordinary for new docs to want their own tests/MRI's. But you should be able to get relief from you current symptoms while the diagnostic journey continues.

Kyle

[HVAC]

It has been my experience that when I start with a new Neurologist I start from scratch. It does not make it right but many Neurologists want to watch you themselves. My first Neurologist said I had MS but he took another job out of town that same month and the Neurologist he sent me to said it was not MS even though I had a classic MS MRI and an abnormal Evoked Potential Test and all other tests for other illnesses were negative. I had to start with a MS Specialist and it took two years even with abnormal MRIs.

Alex

[fuzzydogs]

when I say it was clear, I mean no "O bands and the bloodwork was good, they also tested for lymes, no lymes..I was told by the neurologist that one in 10 people do not have the O bands who are diagnosed with MS..the wait and see, is irritating to me because the original MRI was almost three years ago..and my current neurologist didn't care for the way the MRI's were don't, without and then three weeks later with contrast, this time he did both at the same time.  I don't have sever let or arm pain, I periodically get Charlie horses at night in my legs and periodiacally get a localized numbness in my calf, my hands are weak and my extremities (feet an arms) fall asleep easily..i have chronic neck and back pain..but that's it, my biggest issue this year is the bladder issue..prior to that it was the vertigo year before last, several detached retina issues in my left eye last year and now the bladder.  I have some periods where I have issues with diahrea but they are short lived.  I have no idea if this means anything, and I understand the wait and see issue, but I also know that early intervention also helps to keep it from progressing at a great rate.  So, my concern is the neurologist who diagnosed me almost three years ago with viral meningitis and then didn't bother to have me follow up..i am going to see a specialist on Wed at Penn.  he doesn't take on new clients but he can maybe at least shed some light on whether this may be MS or another neurological or auto immune issue

[immisceo]

The wait and see approach is not uncommon when it comes to the diagnostic protocol for MS. It can take time for things to change on an MRI or for new, objective clinical signs to show up.

I'm not sure what to say about your MRIs. So much depends on the protocol, the software, the tesla strength, the sequences, the radiologist. It could be that the later one with contrast was just run with the sequence that causes active lesions to enhance. If none of them did, that would indicate no lesion activity in the last 40 days (roughly) and the older lesions from the previous MRI would not have shown up in that particular sequence. They would still have been there, just not showing up. However, this explanation requires a few assumptions on my part as the information you provided is missing details needed for a more educated guess.

When you say you had 'clear spinal fluid' what do you mean? What was tested? For the purposes of supporting MS as a possible diagnosis, it would have been tested for oligoclonal bands (along with the blood sample taken the same day/same visit). It's important to note that this test is more a guidepost, not a home run either way. It's falling out of favour a bit as far as diagnosing MS, but is still useful if your doctor is trying to determine if there is infection involved, for example.

Either way, you should be able to be treated for your symptoms even if a final diagnosis isn't forthcoming. If you feel you are not being offered proper treatment to help your quality of life or are uncomfortable with wait-and-see, I'd recommend trying another doctor. But wait-and-see is something most of us will have heard at some point along the way and isn't necessarily the same thing as being ignored. MS can be slow moving and definitive evidence can take its sweet time showing up.