NeuroTalk Support Groups - How long can MRI show no lesions with MS?

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- - How long can MRI show no lesions with MS? (https://www.neurotalk.org/multiple-sclerosis/83494-mri-lesions-ms.html)

Sorry, I tried to keep it short, but......

I'm afraid it is you all that need to pull up the chair!
Here's the info. The thing that has really struck me with especially this current bout is that everytime my MG shows up, it is eventually overtaken by this other problem. I have trouble believing that cord compression problems would time right along with an autoimmune disease. Anyway, I hope this info isn't too "messy". I promise future posts will not be so wordy! Thanks for the tip on the cut and paste!

My LONG history:
First, I had a very severe, never diagnosed illness 34 years ago (1975) at age 18. Started low grade fever with back ache and joint pains, progressed over a week or two to spiking fevers of 105+ at night, severe migratory joint pain. My white cell count was 3x normal with almost no red cells being made (I became very aneamic by the time I was released from the hospital), no appetite. I was tested for RA, Lupus, Hodgkins, and I don’t ever remember what all - all negative. Released with a diagnosis of “fever of undiagnosed origin”.
One specialty not called in was Neuro.

1991 car accident with severe whiplash, 1993 cervical discectomy with plate at c4-5

1996 - seemingly sudden onset (hindsight I did have some sx leading up to it), while shopping at a mall I had a swimming head sensation and knew something was wrong. My daughter helped me get out and to our vehicle, but I was less and less able to help her with my legs and barely made it to the car. She drove home as I rested reclined, then I felt I could walk but barely made it to the couch in the living room.

After resting again, I tried to make it downstairs to my husband ( I know-unable to take the hint!) where I collapsed to the floor, completely unresponsive but fully conscious.

LP was done for MS and ?? but was normal. A Positive Tensilon test prompted a preliminary dx of Myasthenia Gravis that was removed because of lack of antibodies and EMG results.
Later, under still another neuro (1st one was a jerk), an evoked potential showed blockage and it was presumed that MS would show in 6 months. About a month after the EP, I went totally, arms and legs spastic.

Yet another neuro (last one on maternity leave) picked up a Hoffman’s response and sent me for an MRI. Although there was “artifact from the metal plate from the 1993 surgery, Radiologist felt there may be cord compression.

My neurosurgeon disagreed but didn’t order a myelogram to make sure, a second opinon surgeon decided it was the most likely suspect and because he was my surgeons teacher (I didn’t know that when I went to him) he convinced my surgeon to do a 2nd discectomy at c5-6 in 1997.

The H response was not there at surgery day, and I now feel probably my neuro was correct that time!

2003 - another bout, but I had felt the weakness coming somewhat over months, had been having pain in my neck and upper back and had recently shown spasticity in neuro exam. MRI’s laying and stand up, showed nothing and it resolved in 2 months.(December)

2004 - April - Suddenly found myself unable to chew a bagel I was eating on my drive to work. Made it to work, but couldn’t get out of the car. When I went to see my new neuro surgeon (presuming my neck again), I was much less hyper reflexive, but extremely weak and unable to walk. I was admitted to the hospital, she ordered a full spine and brain MRI’s (some with contrast I believe) and called in a Neuro with a great rep for diagnostics.

That neuro found and confirmed MG with EMGs. MRI’s apparently were negative for anything except a 3rd disc c6-7 that I already new was bulging. I began treatment for MG, surgery to remove Thymus, Prednisone, Imuran and Mestinon.

“Had” to have surgery on c6-7 one mo. after the thymectomy because the rib spreading had caused worse probems on the disk. During the treatment time, I would have muscle spasms, fasiculations, eye pain, urinary incontinence and my neuro kept checking to make sure we had looked at and ruled out MS.
Her subspecialty besides MG is end stage MS, by the way.

2005 - Fall - started with the spasticity AGAIN, and couldn’t stay upright for any length of time without breaking into sweats then chills. My
neuro pulled me off all meds and sent me to PCP to check on non-neuro problems.

At the end of the year it was discovered I had sleep apnea (hypopnea), I was put on CPAP and was able to regain some strength and carry on my life.

Eventually by late 07 I was able to walk normally again, got back to full time work (not much else, but hey!) and was looking forward to some normalcy.

Unfortunately, the foot pain got more severe again, and I started having real balance problems - even just standing on a flat surface I would tip over backward. The swimming head sensation happened more and more often (orthostatic dizziness I found out).

5/08 - Had a cervical MRI (another new neuro-my good one stopped taking my insurance) - showed possible cord compression.

7/08 - Yet another new neuro (last one couldn’t speak English well enough to tell me to stay off bumpy roads ) , thought possibly vertebral artery problems, did a doplar (negative) and sent me to a neurovascular surgeon.

10/08 - had a cervical myelogram that showed no cord compression and region is stable for now.

11/08 - had an arteriogram (vertebral arteries check) that didn’t find any problem there, but found an unruptured aneurysm in the central
carotoid artery.

1/09 - had the aneurysm coiled. Woke with the blank spot in the R eye. He thought maybe a type of stroke that he had been concerned about, but the Opthalmalogist did vision feld test and exam and says it’s not a brain stroke, not retina problem, not a floater, not glaucoma -
he was stumped and wants to see me again in April. The spot has stayed, getting a little better, but flucuates in severity.

2 days after the coil, taking a shower I started on this episode which initially was MG. I went to my then neuro and he questioned the MG dx in general, but didn’t suggest other things to look at so ....

I have selected a new neuro again ( the last, I hope). I figure if he had to send me to the neuroscience department of the University of Colorado without trying anything himself, I needed someone either more knowlegeable or willing to deal with my problems.

Anyway - newest neuro (Dr. P) - said yes on the MG, then said my other sx (hyper reflexive, vibration sense deficit) looked like a polyneuropathy, but she ruled out the CIDP (cousin of MS, by the way), due to lack of slow F-waves on all my prior EMG’s.

She was all ready to try to pass me off to some other medical realm (possible CFS?), when I pointed out how weak I was that day, that I had had shocks from my feet to my brain with every step the day before, and the fact that my bowel function had basically ceased.

She did another exam and confirmed the extreme neck/back weakness and did an EMG the next day which was negative ( I think I know why - my bad - more on that at another time).

She has ordered a ton of blood work again, looking at Lupus, thyroid and of course MS again. She has me tapering from the Prednisone very slowly (3 mos from 40mg to 0? - is that normal?) prior to going in for full spine/brain MRI’s w/ and w/out contrast.

She says the presumed cord compression leftover problems can’t be whats going on because they would remain static unless another level was compressed and my problems are progressing. The myelogram showed no further compression.

She’s sending me for a SFEMG (still to reconfirm the MG). She feels the MG is there and this second problem is in addition to. Mostly because I respond well to Mestinon which only works on MG (so they say).

That’s me in a nut shell. PS. I’m low on D (she ordered 800 IU daily-I don’t have the test result), B12 was good, Copper was good.

I don’t have the results back yet on all the other tests, but included are ANA, RA factor, thyroid panel, and a panel testing for Lupus, and some others that I can’t remember.

Sx list with the new sx’s shown with an asterisk, and those increasing in severity bolded.

Vision disturbances;
ache in both feet and palms of both hands, w/burning at times;
Spasticiy, usually legs but arms too;
tingling sensation in both feet, lower legs, hands;
Brain fog;
shock sensations from extremity to brain;
Weakness numbness in feet, knees and fingers;
Fatigue;
inability to maintain balance - especially with eyes closed;
Difficulty swallowing cold liquids with stabbing pain in my throat;
muscle spasms (severe) that migrate from muscle to muscle;
Urinary frequency &/or incontinence;
muscle fasiculations - all over the place;
**Bowel dysfunction**;
**muscle wasting in hands and feet **;
hyper reflexive at the knee;
severe mid thoracic back pain often precedes weakness/fatigue;
weak neck & thoracic muscles;
**White, blank area in the R eye vision**;
eye pain-both eyes but R worst;
ataxic gate;
feeling like I need to stretch legs/hands - it feels like the nerves are right
under my skin sometimes, and I have had times when shaving my legs
the razor made really tingly feelings as I drew it along;
heat intolerant -wipes me out!;
“tearing” type sound in the muscles just above my knees when sitting or
stooping;
**loss of /reduced vibration sense in feet and knees**

LORD - I’m a mess :(- and I hope I got it all. I’m not really sure anymore.

Thanks for your time everyone. I really appreciate it.
:grouphug:

Quote:

Originally Posted by Dejibo (Post 493875)

I am so sorry that no one has answered your post yet. some of us are away, and some are thinkers and need time to form answers. H*-ang in there.

My response is...

MS is the great imitator. it can closely mirror so many other diseases, and many of us who have this disease are still in the "what are they talking about" lane. I am glad that you are seeking medical care, and continueing to seek more answers instead of sitting in the corner and waiting for them to come to you. loads of us have been dismissed, misdiagnosed, and shoved from one MD to another.

MS is diagnosed through time and space. It "normally" requires 7 to 10 lesions in specific areas of your brain to appear in at least 2 MRIs done at least six months apart. The*859+* ventricle area will have a spattering of lesions from where the mylin has been eaten surrounding that area. Usually at least 2 "attacks" of anything from a dropped foot to Optic neuritis. Its very rare to be diagnosed on your first attack, unless your MRI is full of lesions, and even then they put you in the "suspected" lane till another MRI can be done WITH contrast six months down the line.

So, 2 attacks, 7 to 10 lesions, and a consistant history of flairs, or Optic neuritis. An LP (spinal tap) that shows Obands is typically thrown in as part of the proving grounds. 99% of the time no obands, no lesions, and minor flairs will result in being sent home to continue seeking another reason for your flairs other than MS.

There are more than 100 other diseases that can mimic MS. Some of them produce lesions, some dont. B12 deficiency. Lyme, MG, Sjogrens, Lupus, and the list goes on and on. Its EXTREMELY difficult to diagnose MS through a message board, even with clearly descriptive language. Most end up here with a firm dx in hand, or still in the chase of trying to find the answers for "what is this!" We would love it if you would hang out, or maybe be more descriptive about your own search. Not receiving an answer on your post simply means that most of us either didnt have time yet to respond, we missed it, or we dont know.

To answer your question more directly.

I dont know. Some here have been diagnosed with less than the required 7 to 10 lesions, and skipped the LP process because the symptoms were so dramatic, and clear to the neuro providing the tests that the door was opened, and they were taught the club house handshake. Some went with very few sx and were told their MRI was chucked full of lesions, and taught the handshake.

MS is so many different things to so many different people. Some of us are half blind from optic neuritis, and some of us are dragging a leg. Some of us are too exhausted to care for our families, and need help, and some of us are following that old text book they keep dragging out. So, its very hard to say..."this will happen for exactly two weeks, and then, it will change over to this, and then...MS forgot to read the rule book, and marches to its own drummer.

I do hope you find some answers. Most of us have been very lost, in the dark, dragged from MD to MD, and told to go home and rest, and not be so uptight. it sounds like you have a good team on your side who are not quitting without getting you some answers. That is the best first step.

Pull up a chair, and tell us more.

I'm in utter shock reading what you've been through. How scary those experiences must've been, and not having a definite answer for so long just adds to everything. :eek: You poor soul. :hug:

Ras, you sound a whole bunch like me, since 99, no dx though, and just in limbo. at this point I keep going, I have five kids an dwork full time..although having some rough times and out of work few days.

I am in PT for spasticity, terrible weakness they found on right side, and for balance issues worse on right side. They were surprised I have been like this so long. PT said boy Sarah you have learned to compensate over many years havnet you...well yeahhhh life goes on...falls, dizzy spells, numb/tingling pain, weakness, burns from lack of sensation, etc etc.... it is hard so RAS and all I send you great BIG hugssss,sarah

It's worse on paper!

Thanks for reading my book!

I have actually been fortunate in a lot of ways - got married to a wonderful man when I was 19 - yep, still married after 33 years! :inlove: - had my daughter when I was 20 and my son at almost 22. I had a whole space of time while they were growing up with very few, if any, symptoms that were severe enough to slow me down.

I have a beautiful almost 10 yr old granddaughter that I was healthy enough to really play with (like a kid, I did :D) and we are very close.
I'm trying to convince her to want to be a GOOD neurologist, by the way - she is certainly smart enough :Clever: - and maybe she'll revolutionize the way the docs deal with their patients;).

I work with a fantastic set of people and have bosses that are the best - they have been so supportive!

My neighbors are so helpful to my husband and I; they bring us home baked GOODIES:Starvin:, call and check, volunteer whatever help we need (my husband suffered a severe TBI last year and is doing very well, but isn't his old self yet and get's tired much easier - this stress isn't helping him at all), and sometimes just sneak over and do things without asking!

I'm just surrounded by loving, caring people, and when I'm not in a bout I have a very fulfilling life.

Truely, my only complaint is life is that I keep :Bang-Head: with no answers and hearing the same condition names come up over and over, repeating the same ole tests over and over, and the bouts come closer and last longer so I dunno if it's time to go on disability, hold out for a dx this time so I can get treated - sell everything we own and go :sunchair: (umm-that sounds good!) or what. I'm just getting really tired of :deadhorsebeat: , you know?

But I am so much luckier than so many!

You take care!

Quote:

Originally Posted by dmplaura (Post 494595)

I'm in utter shock reading what you've been through. How scary those experiences must've been, and not having a definite answer for so long just adds to everything. :eek: You poor soul. :hug:

Quote:

Originally Posted by sabimax (Post 494693)

Wow Sarah,
What all have they checked on you? I am so lucky my kids were grown before this hit in 1996 so hard. I can't imagine how you can do it while raising children!

My sx's are pretty evenly distributed on both sides, and I don't lack temperature sensation (YET!), but I sure hope they find your answer for you someday soon and get you better! Just curious - did you have a severe, unexplained, high fever illness sometime prior to all this starting too?

My aunt has RA and disclosed to me during my last episode that she had been sick when she was 18 as well and after my illness at 18 she always wondered if I wouldn't come up with some "weirdo" disease too.

Take care of yourself - be talking to you, I'm sure!

((hugs to you))) :hug:

I dont have any answers for you, but it sounds like your MD is a dream. She isnt quitting till she gets some answers, and thats a good thing. hang onto her!

Till then, come play with us. :cool:

hi becky, no no high fever illness that I recall. But in 99 after one of the babies births, I started having troubles...each year seems to be worse, less good days more trouble days. But I keep going on, as best I can, trying not to get down about it all...sometimes is hard. PT is nice as they noted how weak the right side is, and the balance, so gearing me for exercises to hopefully help or at least strengthen me up. I am also doing yoga a bit more, to help my muscles... and to stretch often. hugssss,sarah

Quote:

Originally Posted by Dejibo (Post 494727)

Thanks for the hugs! and the answer.
Yeah, I think I have found a good one, though she was ready to toss me to other medical realms, at least when I provided the prod she got moving big time. One of the posters on the PN forum, Dahlek, gave me a hint that a good Neuro LOVES a good challenge, so I intent to keep challenging her until we get an answer.

Sadly though, I have a dear friend who lost her sister a year ago to some neurologic disorder that was NEVER dx'd. The daughter even donated her body and brain to a lab to try to get an answer as to why her mother died, partly so she and her children would know if it was anything hereditary, and even they couldn't determine what it was. It sounded and apparently looked a lot like ALS - the time frames were right and I had them take her to my old neuro who was very good and she felt it to be ALS, but apparently there was some requirement on some test that wasn't there.

I guess they just don't know as much as we all (especially they) would hope they do.

Thanks again. Hope you had a nice Easter, and are doing well.

Becky

Quote:

Originally Posted by sabimax (Post 494884)

Sarah,
I had a thought - I've been on almost every forum here, you know, looking for answers.

You mentioned burns that you don't feel. That and your one-sided (mostly) presentation sound like what I was seeing in the PN forum and my research on Small Fiber Peripheral Neuropathy, aka SFN. This one is very difficult to pick up on the EMG's etc.

Has your neuro ever mention SFN to you? You may want to bring it up it not. Here is a link for a little more infomation on it:

http://en.wikipedia.org/wiki/Small_f...ral_neuropathy

I hope that worked - I'm not very "techie". If not and you want more info from me on it, let me know. And good luck!

Hope you and your family had a wonderful Easter! My daughter and 9 yr old granddaughter came out and made us a wonderful Easter dinner, we hid eggs in the house (I even got to one time before pooping out) and had a couple of hunts. It was nice to do something semi normal for a change. Gotta love my girls!!!!

Hugs to you and yours, gently to you of course. Let me know how things go!

Becky

So how long without lesions showing up on an MRI? About eight years for me.

My presenting symptom was Peripheral Neuropathy. I was told it was ideopathic for a few years until my neuro noticed that my reflexes were getting more brisk. Since that was not normal for PN, he sent me to a MS neuro who told me that the lesions that showed up in my spine were "normal" and come back in 6 months. I had a remission and got my general practitioner to prescribe another MRI (again with contrast) and no lesions were found. I took both MRIs to a third neuro and she said that I had MS (duh!). Lesions that come and go are MS. The second neuro also did a Lumbar Puncture (spinal tap) but it didn't show any Obands. That is not unusual with mild MS.

So that is my history and I have had only one MRI since. It showed no lesions. I had the MRI done because I was having extra heavy balance problems. Currently I have all of the fatigue and balance problems in addition to my peripheral neuropathy (demylination of the nerves in my feet).

I've heard of some people who have yearly MRIs but they usually have severe or primary progressive MS.

I've been on Betaseron since I was diagnosed by neuro number three. Still go in 2X a year to neuro but no MRIs. Hope this answers your question.