Opinions would greatly be appreciated....

I have been on this unwanted merry go round for the past 6 years. No diagnosis, just monitoring MRIs, and other tests. I just moved 1 year ago to a different state so I have all new doctors.
My VEP came back normal, spinal MRI was also normal, spinal tap awaiting results with the bands. The following are the results of my brain MRI :

Impression:
No significant overall interval change in size, number, or configuration of innumerable demyelinating
lesions predominantly within the supratentorial brain When compared to prior study of 8/2014 no definite new lesions are identified. No abnormal enhancement or restricted diffusion to suggest active demyelination. Findings are consistent with patient's known history of MS.

It does mention about patient's known history of MS but that is not true. I don't have a DX yet. Prior to this latest testing, Neuro looked at last MRI and said it looks like MS. After reviewing some of the tests today, she seemed less sure. She mentioned I could have another demyelination disease.Lymes,Syphillis and sarcoidosis have been ruled out.

Feedback would be greatly appreciated. My next appointment isn't for another 3 weeks.

[MSW1963]

Before my MS dx was official, the same phrase appeared in my MRI report. In my case I think it was in part due to the way MRIs were ordered by my doc, which included a dx code for MS, included for instructional? purposes for the MRI techs., and for insurance claims processing purposes.
Within a year or so my dx was officially confirmed.

[22cyclist]

There are about 400 mimics for MS and it sounds like you have a good MS specialist who is trying to weed through those. They are very good at diagnosing MS when it is MS. Try to think of this as a good thing that perhaps you have something that can be fixed.

Keep us posted, its always interesting how these things turn out.

Take care
Lisa

[Poolwatcher]

Your docs have to rule out other causes. If they do, then what is left is MS.

[jskmssss]

TO: MSW1963

Before my MS dx was official, the same phrase appeared in my MRI report. In my case I think it was in part due to the way MRIs were ordered by my doc, which included a dx code for MS, included for instructional? purposes for the MRI techs., and for insurance claims processing purposes.
Within a year or so my dx was officially confirmed.

So from the start of your journey until you had a DX it was just one year or was it from the time
you had MS as a diagnosis used by your doctor? My situation is the same, the dr. used the ICD code
for MS on the script.

[MSW1963]

Far from a one year journey I'm afraid. I had sx beginning in my teens, with ON, chronic UTIs with no medical problems to explain them, and cognitive problems always attributed to my gender, combined with sx that are hard to dx, equaled a dx of hysterical female. Had a 5yr long cluster of MS sx that led to a dx of Epilepsy.

I was lucky that my exacerbations included only the mildest of mobility problems like unusual clumsiness, and remissions that left few deficits. Until fatigue and cognitive problems hit full time and I finally read my 2yr old MRI report with too many to count brain lesions consistent with MS. Until reading the report, I didn't know what MS was.

The last year of the journey I was determined to get a dx. and on a DMT.

[jskmssss]

MSW1963

I am having a difficult time coping with everything. Last week, the neuro gave me a copy of the last MRI and when I read it was innumerable demyelinating lesions, it freaked me out. I still don't have a dx, Im waiting for spinal fluid results. I just am worried that I am going to be disabled soon.

[MSW1963]

My lumbar puncture= spinal fluids were always clear, no O-bans, but that's probably because by the time I had a lumbar puncture I was no longer having active CNS inflammation, which I think correlates with the o-bans. My lesions on MRIs were old scars due to the onset of the burnout phase of the disease.

Lumbar puncture=spinal tap is invasive and no longer the gold standard for a MS dx, nor is it considered the most reliable test due to what's referred to as the burn out phase of MS, or if you are in a remission and there's no active disease=no enhance lesions on MRIs=no o-bans in spinal fluids. At least as I understand the current diagnostic/disease process for MS.

If you are confidant in the care you are receiving from your doc, please calm down, follow your doc's advice. Take good care of yourself and check back with us soon.

[SNOOPY]

Hi jskmssss,

She mentioned I could have another demyelination disease

The link below explains the different Demyelinating Diseases.
http://spinwarp.ucsd.edu/neuroweb/Text/br-840.htm

You might end up with a MS diagnosis or you may end up with a different diagnosis, only time will tell

Signs and symptoms are different for each of us as is how a diagnosis of MS is ultimately made. Although there is a diagnostic criteria and has been for many years, there are those out there who have been diagnosed with MS without meeting the criteria (McDonald Criteria). MS is a clinical diagnosis.

It is possible to have clear MRIs but show o-bands on LP results.

At the time of my diagnosis I had a clear MRI, positive LP results (o-bands). I was in a severe exacerbation at the time of my diagnosis. My Neurologist told me the LP had a better chance of showing "something" due to the condition I was in versus if I was doing fine. He told me that once you have o-bands you will always have o-bands. I have never wanted to repeat my LP just to see if he was correct

[jskmssss]

attnetion: SNOOPY

It definitely will be last one too. This is the second one I had, the last one was done about 6 years ago
and this time, my neuro said it was crucial to have another one. I reluctantly agreed. The spinal tap
was bad enough but then I got a spinal headache despite lying down all weekend lots of fluids and caffeine drinks and pills. I then had to go for a blood patch which for me was much worse than the
spinal tap. It wasn't the actual procedure which was worse, the discomfort after the procedure was worse. I was surprised how much blood they took from my arm and injected the full amount in my back. So never again will I be having a spinal tap or a blood patch.

My VEP test was normal.

Snoopy, how was your VEP results ??

Hi jskmssss,



The link below explains the different Demyelinating Diseases.
http://spinwarp.ucsd.edu/neuroweb/Text/br-840.htm

You might end up with a MS diagnosis or you may end up with a different diagnosis, only time will tell

Signs and symptoms are different for each of us as is how a diagnosis of MS is ultimately made. Although there is a diagnostic criteria and has been for many years, there are those out there who have been diagnosed with MS without meeting the criteria (McDonald Criteria). MS is a clinical diagnosis.

It is possible to have clear MRIs but show o-bands on LP results.

At the time of my diagnosis I had a clear MRI, positive LP results (o-bands). I was in a severe exacerbation at the time of my diagnosis. My Neurologist told me the LP had a better chance of showing "something" due to the condition I was in versus if I was doing fine. He told me that once you have o-bands you will always have o-bands. I have never wanted to repeat my LP just to see if he was correct

[MSW1963]

snoopy, great post and very important to consider during the diagnostic process. My glaring bias showing based on my experience, and my glaring lack of anything remotely related to medical school education and specialized training.

Posting on a MS site, easy. Completing a specialist education and training in diseases of the brain, hard.

[SNOOPY]

Hi jskmssss,

You definitely didn't have an easy LP and very understandable why you would not want another

Snoopy, how was your VEP results ??

Inconclusive

At the time of my diagnosis (1985) the MRI was relatively new, there were 2 MRI machines in the entire State of Colorado. The diagnostic criteria was also different (Poser Criteria). When I was scheduled for the LP I was also scheduled to have a Myelogram at the same time. This was scheduled as inpatient. I spent 48 hours in the hospital and had to stay at 90 degree angle due to the dye used for the Myelogram. Removal of the spinal fluid first (LP) then injected with dye for the Myelogram. I scared the staff as they said I almost passed out and was as white as the towels.

My diagnosis was based on a positive LP, Neurological Exam and symptoms. Any doubt about my diagnosis were removed one year after diagnosis when I had my second severe exacerbation.

If you like the Neurologist you are seeing, hang in there and let him monitor you. In time you will have answers

Hi MSW1963,

I do not claim to know everything about this disease and the variations to what each person experiences makes this disease difficult to understand, even for the Professionals. I definitely do not have any sort of medical background.

Whatever limited knowledge I do have is based on my own personal experience with the symptoms, exacerbations I have dealt with as well as conversations with my Neurologist. I have been a member of MSWorld since Dec. 2004 and I have learned quite a bit from other members, past and present.

Take care.