SIX lesions AND symptoms, but in limboland?
 

My sister has had neurological symptoms for several years now. Recently, it became much worse and she now has numbness in her hands, lack of balance, and slowed reaction times (she's 37). Furthermore, she says her neuro did a pinprick test and that she has no sensitivity to pain on one side of her abdomen. She just got her MRI results back and there were six lesions in her brain! Mostly "around the edge" but at least one was "deep". Still, her neuro said it was "inconclusive", and so she's running a host of blood tests and set up an MRI of the spine.

Is there anything else to conclude other than MS? Apparently, she had an MRI done two years ago when she'd been experiencing numbness in her hand ("carpal tunnel"........not), and there were lesions even at that time....although the neuro at that time never told her!!!!! Her new neuro commented on it, and said she wasn't sure if the lesions on the new MRI were new or not from that time. None of the lesions lit up with contrast dye......what does that mean?

And, dumb question but reading online confused me, what are lesions? I thought someone once told me that it was scar tissue, but then I read that it's due to lack of myelin and if the myelin re-heals, then the lesions will actually disappear. ?!

At what point does she come out of Limboland? The neuro didn't schedule a lumbar puncture, and I read online that it isn't even required anymore (when my neuro suspected MS four years ago, I had TWO lumbar punctures....my sister said no way no how will she have one). But with six brain lesions and all sorts of serious MS symptoms that have lasted or come and gone over at least two years, wouldn't a doctor call it at least *probable* MS? Heck, my neuro said "probable MS" for me and all I had was two spells of symptoms within a two month period (never had lesions, so the diagnosis fell by the wayside, and now I just am treated for seizures that started during that same period). Thoughts?

I feel sick about everything, but my sister seems very matter-of-fact. She says she's already had to learn to adjust to her condition, label or not, which I can understand. I'm just hoping they treat her instead of leaving her in limboland!

She really should do the LP to rule out mimickers of MS (such as Lyme).

Look up the MacDonald Criteria for diagnosing MS. If she qualifies for that, and all other mimickers of MS are ruled out (such as Lyme, Sarcoidosis, tumor etc.) then she should ask the doc why he isnt diagnosing MS.

MS treatment is no walk in the park, so you want to be pretty certain about the diagnosis.

Sheesh, Footprints, If I were you I'd leave a few of your footprints on those Neuro's heads.:mad: Let's see, you and your sister have all these symptoms and lesions and other MSy stuff and neither of you have a deffinate DX?

You both need new Neuros IMO!! Try to find a MS specialist Neuro. Sounds like these guys don't see much MS.

BTW, lesions show that there has been some injury to the CNS and does not necessarily mean MS or demylination. Scar tissue is whats left at the end of your nerves after demyelinization has taken place. It's usually this scar tissue that messes with the message conduction in your nerves....thus MS Symptoms.

Good luck to you and your Sister. I'll be thinking about you and hoping for a DX for both of you,so that you can have proper treatment.

In the meantime, don't be afraid to ask for symptom relief Meds. That's the least the twerp Neuros should do, is to treat your symptoms.:eek:

Hugs,

There are many diseases that mimic MS, including Lupus, Lyme disease, B12 deficiency, etc. MS is a often dx of "exclusion", whereby it is often diagnosed only once all other conditions have been ruled out.

"Lesion" basically means any kind of damage. Within the brain, lesions (damage) may be caused by many conditions, i.e. migraines or strokes.

With MS, what they are looking for is a certain type of lesion; correct size, shape, and location, either on the brain, or spinal cord. If the right kind of lesions are visible on an MRI, this is one indication that we have MS. However, lesions are not the be-all/end-all as far as diagnosing MS, or monitoring disease progression. Our history is equally important.

MRI's are just one tool used in the dx, but the results of this test (or a spinal tap), are not 100% reliable either. That is why Neuro's first eliminate all other conditions and factor in additional testing results - clinical testing, Evoked Potentials, patient history, etc. - into the dx process.

If the lesions are not enhanced, it is sometimes because dye was not with the MRI. If it was used (and they are MS lesions), it is likely that the unenhanced lesions are plaque (scar tissue) which is not currently inflammed.

It may be that the lesions do not "appear" to be MS lesions, or they are in a different area of the brain then where ours are typically found. Then, with the lesions not currently enhancing (or perhaps because there was little change from the last MRI) this has the Neuro uncomfortable about making a firm dx as yet. (In your sisters case, it does seem that MS is distinct possibility based on her clinical results and history . . . but they really like to see precisely what they are looking in the MRI too).

Did she have a spinal MRI or any other testing? Personally, I would push the Neuro to explain these lesions and neuro signs away, to try to determine where there seems to be doubt. If the Neuro is JUST looking for (yet) another piece of evidence, I would suggest that a spinal MRI, Evoked Potentials, or ANY other type of testing be done to firm up the MRI results. Personally, I wouldn't do an Spinal Tap again, except as a LAST resort.

Good luck!

Cherie

Thank you for your thoughts. She goes for MRIs of the brain stem and spinal cord tomorrow, but won't get to see the doctor for almost three more weeks! Too much time to think, though, because she said she was doing some researching and that her symptoms are making her think ALS! I did a quick search myself after talking to her and I don't think it's ALS, primarily because she's lost all feeling in both her hands, which would be a sensory problem. ALS info states it's only a problem with motor neurons.

BUT, I'm thinking it sounds a lot like PPMS, which isn't any better, but I'm not going to tell her that right before xmas (or at all, except to point out it probably isn't ALS) :( She said that she hasn't gotten any better and is, in fact, worse. Even her friend could tell. My sister had no feeling in one hand, and now she says she's lost feeling in her other hand. Her legs are weaker, and she stumbles even more now. She's so tired.

She's not having "spells" of neurological symptoms. They've come, and they've stayed. That's not good, huh?

Hello and Welcome to NeuroTalk Footprints.

If your sister has MS there is no way to know at this point what type (RRMS, PPMS ect) she may have. If it is MS she could be in an exacerbation/relapse/flare-up/attack and it can get worse before it gets better.

:) Hi Footprints,

WELCOME TO THE NEUROTALK FORUM COMMUNITY!:D

I don't understand why her neuro is holding off on making a decision with all of the clinical and physical symptoms your sister is exhibiting. Especially since these are becoming more chronic than acute in nature. Maybe she needs to get a second opinion at an MS Clinic in your area. Most neuro's welcome a second opinion especially from an MS specialist.

I hope all improves with your sister and that she gets to the bottom of her problems soon.

BTW, I agree with the information that Snoopy has posted. She's right on the spot.

You are very kind. I actually started out on this MS board 4 years ago this past November (Tgiving and Xmas are very stressful because I spent both in the hospital that year and am now always reminded that it is my "anniversary" and worry all over again about a relapse); unfortunately, my old account (same name) got lost for some reason when the board switched over recently. I learned SO MUCH here, and then on the epilepsy board, where I mostly hang out now (my ongoing problem; MS symptoms have been silent for three years now and counting, fingers crossed and knocking on wood......). I recommend people ask here for advice when it sounds like they may have some MS symptoms, cuz if anyone knows, someone here would :D

I'm sad to be back here to learn more for my sister, though.

Lady_Express, thank you for reminding me about the lesions' appearances and locations. I need to get more details about my sister's lesions because that would help a lot. Getting info from my sister is like pulling teeth; mostly, because I think she doesn't know the questions to ask so doesn't know the answers.

I like the idea of putting footprints on her old neuro's head.....lol!

10 Lesions from viral meningitis with no cause
 

Hi! Everyone

I am a 37yr Mom of 2 small children and this past March 08 I had had my first seizure. Thinking it was a TIA stroke I was rushed to ER. Explained to the ER doctor I had sever Headaches for 2 weeks straight and some discomfort in my neck, and now my right side of my body was numb . He diagnosed with me with have a migraine and sent me home.

Not feeling comfortable with that I met with my Primary DR and he order a Eco cardio gram, CT scan and MRI. Though I felt something else was going on and with having a sister and bother in-law as RN they suggested I see a neurologist. I was able and very lucky to get the Head of Nerology at Mass General Hospital. He review all my test and found nothing but ordered new test. The first test showed nothing but the 2nd round of test also did not show anything except for the MRI. The MRI showed 2 lesions. He also order more blood work and Spinal Tape. The spinal show I had viral meningitis and put me on Dilantin for the seizures. 2 1/2 weeks later I had a follow up MRI, this time around 8 more lesions had developed. At this time I was scared to death. Though my Nerologist insisted they where not Cancer or Tumbors which still did not relieve my worry.

So now we are on round 3 set of blood works, Thank god no MS, ALS, Lyme Lupas. Blood counts look great. But MRI showed more lesions . DR still insisting lesions are from the meningitis so we are on to Spinal Tape 2. Not the most enjoyable procedures.

The next option of a explority sugery coming up as the avenue to go which is lesionectomy to take a biopsy is not a realy option that i am looking to go just yet.

So I guess I'm looking for anyone that has been down this type of issue. Since this started I have dealing with depression and mood swings so my Dr suggested I see a therapist to help with me deal with the emotional rollercoaster which has been ok , I have dealing with for almost 2mths. And I feel like everytime I go for a test now it seems to gets worse with no real answers.

Foot prints, PLEASE have your sister seek another opinion. One who has a bit of experience in MS. MS is difficult to diagnose anyhow, and if your neuro is conservative, or not very familiar, it may go undiagnosed for no good reason.

Lesions can be caused by many things, even nutritional deficiencies and migraines. The fact that it DID NOT highlight with GAD simply means the lesion is old, or "not active."

Here is a quick simple formula for diagnosing MS (please do a lot more research, this is just a quicky). 2 isolated events, at different times (otherwise if it is just one event, it is called a "clinical isolated event"). MRI lesions, positive LP. Bloodwork to rule out Lyme and lupus. If all that criteria is met, a diagnosis can be given.

Your sister may not want an LP, but it can give a quick confimatory diagnosis (quick is actually 2 weeks). It really is painless other than the little sting on numbing meds they give (the LP HA, if you get it is he!! though, I did have that). BUT, knowing is so worth is.

Please have her follow up with someone familiar with MS, preferable a GOOD specialist (there are some who say they are specialists, but they are not).

Good luck to you both. Tell her to push for some answers!!! Even if it is not MS, something is WRONG, and they need to find out what!!