help please!!

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

help please!!

Postby SallyDC » Thu May 22, 2008 2:47 pm

so as some of you may know from my previous posts, i've been suspicious of having MS for about a month or so now. Well, my opthomalogist agreed to get me an MRI (with and without contrast). The results came in today and i'm at a loss. Technically, the MRI came back clear. No lesions whatsoever. The only thing is it showed some "thickening" or "scarring" ( i forget exactly what word they used) on the optic nerve. Unfortunately, my eye doctor is out of the country for THREE WEEKS. He's an amazing, kind doctor and i'm so upset i had to speak with one of his residents today. anyway, b/c the report was not "official" since it was not signed off and i couldn't wait any longer (they told me i'd hear monday, and it's now thursday. ugh) they had one of the residents call over and get a verbal report. The resident said the radiologist didn't mention MS once or even that I should go to a neurologist first and I now have an appointment with my opthomalogist the day he gets back from his trip to see what could cause this. I'm so confused. I never had any eye pain whatsoever, no real blurry vision, passed all the eye tests including peripheral vision and color sensitivity with flying colors, but the resident said the damage could have been from a previous bout of optic neuritis which i never noticed. now my major concern is, not only does this mean it's MS, but i think it's primary progressive because i never noticed that inflammatory stage. also, as i mentioned, occasionally i've been having achey and weak legs (this has only been the past month or so). I'm 23, white female so i know i'm in the prime category for MS, but i also understand it's fairly odd for a female my age to get PPMS and my symptoms aren't indicative of RRMS since i dont' think i've experienced any relapses, just exacerbations (which again, makes me think PPMS). any help would be greatly appreciated. I just wish my opthomalogist was here, i trust him and don't want to wait three weeks to get this started. I have a feeling a spinal tap is next in line, and being the extremely anxious (and apparently, claustrophobic) person that i am, and i don't know how i'm going to handle that.

also, is it normal for someone with MS to have a clear MRI? i know in PPMS it's more normal but still really unusual. Is there anything else that could cause this very atypical case of optic neuritis/occasional leg weakness?? Again, anything you guys know would be MUCH appreciated!
User avatar
SallyDC
Getting to Know You...
 
Posts: 21
Joined: Mon Apr 28, 2008 3:00 pm

Advertisement

Postby Lyon » Thu May 22, 2008 3:36 pm

.
Last edited by Lyon on Mon Nov 28, 2011 3:01 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby SallyDC » Thu May 22, 2008 4:24 pm

fyi, this mri was just on my brain!
User avatar
SallyDC
Getting to Know You...
 
Posts: 21
Joined: Mon Apr 28, 2008 3:00 pm

Postby Lars » Thu May 22, 2008 5:07 pm

Sally,
Bob will obviously jump in here with the real facts. It seems I have heard of cases where lesions occurred ONLY in the spinal column. I'm not sure if optic neuritis is possible if that is the case. Bob? I know that financially it is a bit overwhelming but why not spinal MRI's rather than a spinal tap? I think it requires three to shoot the entire spine but maybe it's not immediately necessary to do all three. I also have never had a spinal.
Good luck,
Lars
Lars
Family Elder
 
Posts: 433
Joined: Wed Mar 21, 2007 4:00 pm
Location: Durango, Co

Postby jimmylegs » Thu May 22, 2008 5:07 pm

http://www.neura.net/channels/1.asp?id= ... ps=0&cpp=1

MRI criteria for a diagnosis of PPMS are also stringent.1 In the appropriate clinical setting, a definite PPMS diagnosis is supported by various combinations of MRI abnormalities; these include 9 or more T2 brain lesions in cerebral white matter, each >3 mm in diameter; 4-8 brain lesions and 1 spinal lesion; or 4-8 brain lesions and visual-evoked potentials (VEP) exhibiting conduction delays in the presence of well-preserved waveforms. If there are fewer than 4 brain lesions, >1 spinal lesion and delays in VEP are required, and if MRI results are equivocal, a minimum of 2 spinal lesions are needed. Confirmation of PPMS requires new lesion formation or continuing progression during the next year. Clinically, PPMS and RRMS are easily distinguishable. The presence of spinal cord lesions occurs in both PPMS and RRMS, and although they do not distinguish between these subtypes of MS, these lesions are useful to distinguish PPMS from other disorders. The requirement for oligoclonal bands in CSF, although potentially improving specificity, may be too stringent because a significant proportion (>20%) of PPMS patients have normal CSF.1,9

Overall, the McDonald criteria appear to have refined the diagnosis of PPMS. In one established cohort of 145 patients diagnosed with PPMS, 7% were excluded using these criteria.1,7 In a second study, researchers applied the McDonald criteria to a group of 63 patients diagnosed with PPMS according to the Poser criteria. These patients represented 11.2% of a larger cohort of 561 MS patients. All patients with a PPMS diagnosis and adequate follow-up had continuing progression for >1 year. CSF findings were positive in 96.7% of patients and abnormal VEP P100 latency was observed in 82.5% of patients. T2-weighted brain MRI revealed >9 lesions in 74.6% of patients. In the remaining 18 patients with <8 lesions, a diagnosis of PPMS could be established in most cases using the added criterion of delayed VEP P100 latency or the presence of >1 spinal lesion.10 In all, 57 of the 63 patients (90.5%) meeting Poser criteria for PPMS (10.2% of the 561-patient cohort) also met McDonald criteria for PPMS.10 Thus, precisely defined MRI evidence of abnormalities, progression for 1 year, intrathecal synthesis of oligoclonal IgG in CSF, and VEP findings incorporated into the McDonald criteria may contribute to more precise PPMS diagnosis. In addition, the McDonald criteria for PPMS are in reasonable agreement with the Poser criteria for PPMS.10
jimmylegs
Volunteer Moderator
 
Posts: 9023
Joined: Sat Mar 11, 2006 4:00 pm

Postby dignan » Thu May 22, 2008 6:03 pm

Sally, I'll just jump in to say that we can't tell if you have MS, that's for your neuro to diagnose (or maybe a second or third neuro if you don't trust your first). BUT, also want to add that if the MRI showed evidence of optic neuritis, I don't think you have to actually have a noticeable visual episode for it to count, i.e. the MRI is enough to say you once had an episode of optic neuritis. As you know, optic neuritis doesn't equal MS. However, if you end up with an MS diagnosis, maybe this Pubmed abstract might make you feel better about it being RR not PP:


Case study of 199 patients with multiple sclerosis: the use of EDMUS program

Rev Neurol (Paris). 2000 Jan;156(1):41-6.
Bernet-Bernady P, Preux PM, Preux C, Dumas M, Vallat JM, Couratier P.
Service de Neurologie CHU de Limoges, Faculté de Médecine. neuro@unilim.fr

European Database Multiple Sclerosis (EDMUS) is a standardized tool which allows the collection of clinical, biological, radiological and therapeutic data on multiple sclerosis (MS). A descriptive analysis of 199 patients was done using EDMUS (version 2.2). Most data agreed with previous published results, except a low 0.4 sex ratio.

At the beginning of MS, 42 p. 100 of MS patients developed pyramidal and sensory involvements and 14 p. 100 retrobulbar optic neuritis. Optic neuritis was the most frequent initial symptom of relapsing-remitting MS (25.9 p. 100) but not in the chronic progressive form (5.5 p, 100; p < 0.01).

Surprisingly, relapsing-remitting form occurred more frequently whereas the secondary progressive form was diagnosed less. The concordances between the three disability scales, EGS (EDMUS Grading Scale), EDSS (Expanded Disability Status Score) and AI (Hauser Ambulation Index) were correct.
User avatar
dignan
Family Elder
 
Posts: 1608
Joined: Wed Aug 11, 2004 3:00 pm

Postby Lyon » Thu May 22, 2008 6:56 pm

.
Last edited by Lyon on Mon Nov 28, 2011 3:00 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby Sandrine » Fri May 23, 2008 1:58 am

Dear Sally,

I agree with Bob:
optical neuritis is also considered a stand alone ailment.


I can't see why you should have PPMS?!? You obviously had an optic neuritis, which can mean you have MS, you have no MS and will never get MS or you will develop a MS somewhen.

Because of the problems with your legs I would ask for a MRI of the spine. Usually it's two or three rounds.

If you have optic neuritis and no lesions in brain MRI it's less likely to get MS in the future. I think it's positive.

A spinal tap could show autoimmune desease activity in the CSF, which would make a MS in future more likely (ON + pos. CSF is not enough for Poser or McDonald criteria)

BUT - do you really want to know it now?

I know people who had optic neuritis, no lesions in brain MRI and never experienced any relapse or PPMS-related problems until now. One is a collegue.

There are also people having an isolated myelitis once and never develop MS.

And there are people who have lesions preferentially in the spinal cord. A friend who has RRMS for at least 16 years started with an optic neuritis and two little lesions in the brain. He still has only two there, but a lot more in the spine (but he is still walking).

I'm 27 now, my first brain MRI was 2001 because of vision problems (no ON). It was completely ok, nothing, no lesions. 2006 there where several lesions.

So maybe there's something going on in your central nerve system or not. But if I was in your situation I would not think about PPMS. That's not likely at all.

All the best
Sandrine
User avatar
Sandrine
Family Member
 
Posts: 51
Joined: Mon Aug 27, 2007 3:00 pm
Location: Germany

Postby DIM » Fri May 23, 2008 2:53 am

My wife diagnosed with RRMS from a well known around the world Greek doctor has more than 15 brain and spinal cord lessions most of them active in her MRI (MRI during relapse)!
She has more than 5 spinal cord lessions and walks/feels fine after 4-5 relapses she experienced last year if that matters.
Every one is individual in this devastating disease and what regime-medicine-life follows affects his progression!
User avatar
DIM
Family Elder
 
Posts: 384
Joined: Thu Feb 28, 2008 4:00 pm
Location: GREECE

Postby SallyDC » Fri May 23, 2008 4:40 am

Just wanted to say thank you all for your responses so far!! They have made me feel a lot better. I guess I should just be grateful that the MRI was clear (of lesions at least). I suppose i'm just jumping the gun a little a bit on the whole PPMS thing. This weakness i'm talking about, most of the time it's a "weak in the knees" feeling, if that makes sense, and i'm wondering if it's possibly due to the intense stress and anxiety i've put on my self these past months. Who knows, but when i got to my optho in a few weeks i'm going to ask him for a referral to a neurologist or at least an opthoneurologist. Until then, i decided i'm just going to try and live as if i don't have MS....
User avatar
SallyDC
Getting to Know You...
 
Posts: 21
Joined: Mon Apr 28, 2008 3:00 pm

Postby Sandrine » Fri May 23, 2008 5:03 am

When I feel weak on my legs I usually try not to blame the stupid MS - instead I blame my low blood sugar, my low blood pressure and my general nervousness :D Sounds much better to me...

Big hug :)
Sandrine
User avatar
Sandrine
Family Member
 
Posts: 51
Joined: Mon Aug 27, 2007 3:00 pm
Location: Germany

Postby jimmylegs » Fri May 23, 2008 6:56 am

when i felt weak in the knees it was basically my presenting symptom. after my snowboard crash everything escalated. they found the 2 spinal lesions and 9+ brain lesions, the o-bands in the CSF, and because i'd had episodes of numbness and weakness prior to dx, they decided that counted for "disseminated in time". so, ta-da. according to my neuro, i have the best optic nerve he's ever seen, whatever that means.

i had weak knees periodically for years prior to everything going haywire. it was accompanied by numb feet. i had my b12 tested and they couldn't detect ANY. the test was only sensitive down to 70. i could take b12 for a few days and my feet would prickle back to normal and the weak knees would resolve. i dicked around with this for as i said, years, ignoring my b12 pills until my knees would actually start to give out, then supplementing until functionality and sensation came back.

i had no idea what b12 deficiency really meant - that i was killing my spinal cord - until after the fact when i got the ms dx and started taking shit seriously - all the doc had said was, you're b12 deficient (duh, i'm the one that ordered the test), take b12 pills (duh, i was stupid and thought i could float along with a supplement here and there when the symptoms got really annoying).

all this by way of saying there has got to be a reason for what you're feeling but as we seem to have established on this thread, it doesn't have to be MS! it does, however, need to be taken seriously early on. you seem like a more proactive person than i was, so i think you have that in the bag and that you'll do as well as humanly possible!
jimmylegs
Volunteer Moderator
 
Posts: 9023
Joined: Sat Mar 11, 2006 4:00 pm

Postby SallyDC » Tue May 27, 2008 4:52 am

Thanks so much Jimmylegs!! I did in fact buy some Vitamin B supplements awhile ago, and like you, i haven't been taking them very often but i'll def. be getting more serious about that!! I haven't noticed any prickling or numbness in my feet yet, but my knees have gotten to the point where i felt like they were going to give out (coincidentally, it was at it's worst on the day of my MRI, which also makes me believe that it could be partially anxiety related, who knows). Anyway, thanks again!
User avatar
SallyDC
Getting to Know You...
 
Posts: 21
Joined: Mon Apr 28, 2008 3:00 pm

Postby jimmylegs » Tue May 27, 2008 6:45 am

good stuff, sally, get on top of it early :) when my knees were the worst the would give out, say if i went out of the house with a bit too much of a bound, whichever leg i landed on would buckle. or i had this impression that they didn't want to bend properly, like maybe they would bend the wrong way if i wasn't careful. or just not bend, and kind of jar me instead. don't know if any of that sounds familiar.

tell me about your b supplements, i'm interested in the amounts if you don't mind :)

and if it's muscle weakness you're dealing with, exacerbated by stress, with no noticeable sensory loss, i could look into that... magnesium is lost via stress, and it helps with relaxing tense muscles... but this doesn't sound like the right deal... muscles too relaxed... i'll see if i can dig something up. i have an idea but need to read a bit :)

about the vision symptoms, you might have heard that zinc is quite important for eyes. you could try 50mg of that at bed time, with your b-complex. i wouldn't take more than say, 50mg per day in supplements in the long term. 100mg or 150mg per day in the short term is fine to address a low zinc level but if you're not getting tested, it might not be wise to take so much.

my stepdad takes a multi called vitalux plus, which is supposed to be especially for eyes. it says to take two per day, and each capsule has 20mg zinc. he's only been taking 3 or 4 per week and just reported some newish eye trouble on his good side. so, i reminded him 2 per day to get the 40mg zinc. it also has lutein - have you heard of that for eye health?
and anyway, with its being a multivit/multimineral it can't but do you good all 'round, not just in the eyes. i hear it's pricy though, but i haven't checked to see if there's a tag on the bottle we have here. they're pretty smart, they leave out the beta carotene because they know about the study that worsened cancer risk in ex-smokers who supplemented beta carotene. there might be some actual retinol in it, which is what your body makes from beta carotene anyway. i don't have the bottle right handy but i'll report back if you're interested :)

anyway just some ideas :) hope you can get it all resolved.
JL
jimmylegs
Volunteer Moderator
 
Posts: 9023
Joined: Sat Mar 11, 2006 4:00 pm

Postby SallyDC » Wed May 28, 2008 3:12 pm

as far as the knee weakness goes, it kind of just feels like my knees just could give out a little more easily than normal, if that makes sense. they have yet to do so, and it's not everyday that they feel this way. sometimes i dont notice my knees and it's more general leg aching/weakness. sometimes it doesn't bother me at all! you mentioned though that not taking the B12 is what really made things worse, so i have a question: do you think it's the MS makign your knees buckle or a vitamin deficiency? or did the vitamin deficiency just make it worse? i read that if a presenting symptom is leg weakness it's usually a marker of a poor prognosis. do you think that's true? and do you think leg weakness at the beginning means progressive? i'm scared that my leg weakness means it's progressive but it seems that it could also be from Vitamin deficiency and still be RRMS. SOrry i know i'm not being very clear here!!

anyway, as far as the vitamins, here's what i've got:

B Complex vitamins, 100% of vitamins B1, B2, B6, Folate, & B12 (1 tablet per day, (and it's about 6 mcg of B12)

also, recently i bought some magnesium supplements, that have 400 mg of Magnesium with 230 mg calcium, 25 mg B6, and 5mg sodium.

mind you, i started taking the b supplement a couple months ago but was taking it only very seldomly, and i just bought the magnesium supplement last week. i have yet to use them both at the same time, and i've only used the magnesium supplement for about 1 or 2 days so i doubt that did anything. sometimes i feel like i'm scared to take the vitamins b/c if they dont' work i'll know it's something more serious!! and i'll def. be looking into the zinc for my eyes, thanks!
User avatar
SallyDC
Getting to Know You...
 
Posts: 21
Joined: Mon Apr 28, 2008 3:00 pm

Next

Return to General Discussion

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service