MS Symptoms

[stephieZ22]

Hello, I'm a 25 year old female who has had MS symptoms since November 2011. Symptoms are symmetrical weakness in both legs. I got pregnant in June 2012 and symptoms went away and 2 weeks ago (abt 3 month postpartum) they came back the exact same way. In addition with the weak legs, I have pins and needles in my feet, like a burning sensation (equally in both feet).

Back in  December 2011, I had an MRI done that showed up normal as well a evoked potential test and nerve conduction study that came back normal. I did NOT have a lumbar puncture done. I was not really concerned at that time until I read that MS symptoms go away during pregnancy.

-My question is, could the MRI miss lesions?
-How long do my symptoms have to present themselves for lesions to show up?
In addition, I read on a lot of sites that more that 90% of people with MS have positive oligo bands in their spinal cord during a CSF evaluation after a lumbar puncture.
-Does this mean that the lumbar puncture could be just as accurate as the MRI if not more?

I do not have any eye symptoms, just legs.

Is it possible to have a normal MRI, normal lumbar puncture, and normal nerve conduction studies and still have MS?

It would be great for any advice. I know there are no doctors here, but sometimes people's experiences are more helpful than Dr. Supposid professional options. It would be wonderful if you shared anything even if it's not answering my question 100%.

Thank you in advance

Stephie

[kwarendorf]

Hi LMK - Welcome to the forum, and to the club to which no one wants to belong.

StephieZ22 has not visited in quite some time. I'm not sure where her journey lead. You may want to Post A Question and introduce yourself. I'll bet you have all kinds of questions about your new life with MS. We're a pretty friendly bunch :-)

Keep in mind that having MS is not the end of life as you knew it. I've had it for nearly 25 years and I'm doing just fine :-)

Kyle

[lmkeller]

Hi - I came across this thread tonight, and I was wondering what your outcome was from the LP? I realize its 2 years later, but I was diagnosed with MS yesterday, and I've been reading stories and about the disease all day. Is it possible that you posted your results, but I can't see it? I'd love to know how everything turned out for you.

LMK

[supermum_ms]

I'm not sure what you've read "I've read forum after forum and I've read that it's not unusual for people with MS to have normal MRI's....." is as black and white as that may seem.

People with MS can have clinical signs of brain and or spinal cord lesions, that do not always show up in the beginning stages on the MRI. That can be for lots of reasons, machine strength, type of MS, recovered, microscopic demylination etc but the body usually still provides evidence of the lesion(s) existence, even if its not (as yet) visible on the MRI.

It would be 'unusual' to have MS and not have any brain lesions show up on an MRI or clinically, they develop over time and not all lesions cause sx's, so it is more common to find some lesions on the MRI, than to not find them. Multiple sclerosis basically means many scars, so from my understanding it would be more unusual to be dx with MS if there isn't any.

Let us know how you get on at the dr's

Cheers..........JJ

[immisceo]

D'oh. The 'she' was JJ. I hadn't refreshed after your last response was posted.

[immisceo]

What she said!

I should have answered with more nuance to ALL that you mentioned. In mentioning solidarity and support with being in neuro limboland, I should have added that you're not alone even if there's no physical cause at issue. If it's related to anxiety, you deserve to have this addressed and treated as well, but it often necessitates a tough internal self-assessment. Something to consider for sure.

[stephieZ22]

Dear supermum,

I recognize the psychosomatic fears that may relate to this but I've had these symptoms before I was even pregnant and stressed and I only had one MRI done when these symptoms first began.

What I meant by that is that I'd rather know than not know what I have instead of dreading what can possibly come next.

I've had hormones tested, vitamins tested, everything really and everything came back normal. I'm going to the Dr. today and I'll request a 2nd MRI, we shall see this time.

I've read forum after forum and I've read that it's not unusual for people with MS to have normal MRI's so this is why I'm going in for a second one.

[supermum_ms]

Your welcome!

You said "Not that it's great that I were to have the disease but it would put peace in my mind knowing what it is instead of freaking out as to what will happen next or if I'm going to go paralyzed and die."

Hard questions but worth asking your self none the less.... Why do you think you'd find peace being dx with MS, when you already fear your going to be paralysed and die, with out any diagnostic evidence to suggest you may have MS? I'm not sure you would feel peaceful or anything positive, if what you fear most becomes your reality, could you have more anxiety than what your recognising?

Neither is actually as common in MS as it use to be 20+ years ago, medical intervention has come a long long way. It may relieve some of your fears if you learnt more about the expectations of life for today's dx MSers, definitely would be an asset to you in helping any MSers, you have contact with in your nursing career.

Is it possible that being a new mum is amplifying your fears? Is it possible that you are assuming more than what's reasonable, in face of the lack of medical evidence? Is it possible that sleep deprivation, hormonal imbalance, vitamin deficiency, diet, varicose, over extending your self etc etc the other more common issues for women and or mothers, could a combination or any, also be a plausible explanation that your not focusing on because of your fear of MS?

I did say hard questions and i'm not mentioning them to upset you, quite the reverse but sometimes we find answer by asking our selves the hard questions, it doesn't help to over think, sometimes the answer is the simplest, so just think about it a little.

Cheers..........JJ

  

[immisceo]

Hey Stephie. You're not alone. A lot of people on here have had quite the winding road to get treatment or a diagnosis, so you'll find a lot of folks who know exactly what you're talking about- the frustrations, the worry, just wanting an answer. Around here you'll hear people call it limboland.

You're perfectly correct - there's still so much unknown about the brain, how it functions and what can be done when it starts to mess up. Sometimes neurologists have a hard time giving people answers simply because there are none yet. And that's a situation neither party likes!

But don't get ahead of yourself just yet. Sometimes it's just a case of finding the doctor that finally puts all the pieces together or finding symptomatic treatment that improves your quality of life. Either way, though it may take a bit of time, this forum has weathered the diagnostic storm with many, many people. You're not alone.

[stephieZ22]

Dear zoefromsussex,

Wow that's quite a story. I'm glad you received a quick dx and I'm glad you are trying medications that could possibly work for you. I read that people with MS are capable of living the same type of lifespan that normal people do or like 5 years less or something but that's really nothing.

I'm very frustrated because I'm going to ask for a second MRI and if nothing shows up, I'll feel hopeless. I'd rather just be diagnosed with anything at this point just to KNOW instead of the fear of not knowing what it is. Just knowing what to expect from a disease no matter how severe it is puts peace in my mind. I know this sounds weird but you're so lucky to know what it is. I'm sorry about your vision and I know youll find a medication that suits you well.

They need way more research done on neuro diseases because it seems like it's the only category of diseases with no cure and ambiguous diagnosing.

[stephieZ22]

Dear Kwarendorf,

Thank you for the explanation on lumbar punctures, it was every effective and informative. I had not had one done but want one and I have a Dr. Appt tomorrow to get a referral to the neuro.

I'm just very upset and frustrated because if the MRI doesnt show anything again, idk what it can possibly be.The symptoms come and go so I know it's not ALS or PLS.

It's just frustrating knowing I could possibly live with this my entire life and not know what it is, do I have to keep going back every year to get an MRI so finally the lesions show up?

I've read stories and some people go through MRI after MRI for years and then finally get a dx.

I have one semester left of nursing school and I want to be a nurse but I'm scared I won't be able to finish because of this. I'm still able to walk and no one can tell the weakness but I feel it. It's not severe but annoying and I have to sit down because my legs get fatigued.

Are you on any medications that are helping you?

[stephieZ22]

Hello supermim,

Thank you for taking time to answer each question. That was very nice and wonderful of you to do that. It cleared up a lot of questions for me.

I am still very frustrated because idk what these symptoms are. I have a Dr. Apppt tomorrow to get a referral to a neuro and if I have another MRI done and nothing shows up, I am going to feel so hopeless.

I had every possible test done for autoimmune disorder and everything came back normal. I know it's not ALS or PLS because it comes and goes.

I wonder if MS is the only autoimmune disease that comes and goes.

I don't really care at this point what it is, I just want an answer as to WHAT it is. Not that it's great that I were to have the disease but it would put peace in my mind knowing what it is instead of freaking out as to what will happen next or if I'm going to go paralyzed and die.

[stephieZ22]

Hello Immisceo,

Thank you for taking the time to post. I was reading on every website that I typed in the search engine that a lumbar puncture is accurate but I never had one done. If I get another negative MRI, then idk what it could possibly be. I had every possible blood test done and I know it's not ALS or PLS. This is very frustrating and I have a Dr. appt tomorrow with my regular Dr. to get a referral to the neuro.

[zoefromsussex]

Haha I was sick throughout my pregnancies so it's not much of swap for me! My story? As in my diagnosis? Well going back years I'd had episodes of numbness in my hand/leg plus tingling but was told it was a trapped nerve and never thought any more about it.

In april 2011 when my son was 4 months old I had irisitis which I now know can affect people with autoimmune conditions then in October 2011 I had a severe attack of optic neuritis in my right eye. I went totally blind in that eye over the course of a few days but didn't experience any pain. This was accompanied by severe vertigo and I ended up having an mri and lumbar puncture at a hospital in London, both of which were positive but I was given a diagnosis of CIS, which is a clinically isolated episode and which I believe means you have a higher chance of developing ms.

Then in Feb 2012 I developed optic neuritis in my left eye. That was very painful but not as severe as the first eye but it was more difficult as I still couldn't see out of my other eye so I was pretty much blind for a while! It was at that point that they diagnosed RRMS and I was given an ms nurse and have just been gradually figuring things out ever since.

I've never regained my vision completely so am registered visually impaired but I just use a large font online and am fine on the whole. Since then I've had a few relapses but nothing as severe as the first attack (which also spread to my legs/feet and gave me noise distortion)

I did try Copaxone but it didn't suit me so now I'm about to start Rebif. I think the rules for prescribing dmd's are very different in the UK to other countries as we are only given a dmd after a definite dx of MS whereas I know in other countries they are given for people suspected to have ms as it's thought that the early you start dmd's the more effective they are.

So that's my story. I was lucky to get a very rapid and straightforward diagnosis from what I've read on here!

[kwarendorf]

Hi Stephie -

As has been said, MS typically presents with one sided symptoms. This is not always the case, and I'm living proof. My first presenting symptom was bilateral foot numbness. Ultimately my symptoms picked sides though.

LP's and MRI's show different things. One is not more accurate than the other, they're just different. LP's with o-bands unique to the CSF just show that there is inflammation somewhere in the central nervous system. A positive LP does not necessarily provide specific information as to where the inflammation is. MRI's can show where the inflammation is. In the case of MS lesions appear in specif areas of the brain, c-spine and t-spine.

As to having no lesions on your MRI, no unique o-bands in your CSF, normal nerve conduction studies and have MS, I suppose it's possible. It would be highly unlikely. Is the neurologist you are seeing an MS specialist?

Kyle

[supermum_ms]

Hi Stephie and welcome to our little MS community,

As Zoe mentioned MS has many mimics, and its actually more common for one of the mimics to be causing a persons sx's, than it to be from MS. MS doesn't typically cause symmetrical sx's because of how MS works, it is more usual for the sx's to develop on one side of the body before developing in the other. To be in both sides it can take many years or the next relapse but still the sx's are not exactly the same even when sx's are on both the left and right sides of the body.

Pregnancy does 'not' take away pre-existing damage done to the central nervous system, people with MS don't usually experience relapses during pregnancy but often relapse in the months after giving birth.

If what you experience was due to MS, then i'd be thinking it would be more consistent with spinal cord lesions. The problem though, sx's caused by spinal cord lesion(s) are unlike brain lesions, which have a greater potential to recover or rewire, so i dont think your sx's could of gone away. I maybe wrong but i also believe the lesion would have to be quite big, bigger than the norm for MS or at least to have multiple spinal cord lesions, to be effected on both the left and right legs, I still wouldn't expect equal sx's though.        

To answer your questions:
Q:My question is, could the MRI miss lesions?
A: Technically yes but its due to various reasons, keep in mind that MRI's can pick up very tiny pin sized lesions, so it would be unexpected to not have any at all.  

Q:How long do my symptoms have to present themselves for lesions to show up?
A: No one can really answer that, its more typical for the clinical signs of lesions to show up on a persons clinical exam and the MRI confirms it.

Q: Does this mean that the lumbar puncture could be just as accurate as the MRI if not more?
A: No, each test only adds weight towards the dx of MS, MS is still suppose to be a clinical dx but the MRI is typically the more common definitive. A person has to have MRI lesions in at least 2 of the 4 areas, to meet the Mcdonald criteria for clinically defined MS.

Q:Is it possible to have a normal MRI, normal lumbar puncture, and normal nerve conduction studies and still have MS?
A: Possible but very unlikely to have nothing abnormal at all. A person with MS would actually have normal nerve tests because those tests are for the peripheral nervous system, not central which is MS but the sx's are very very similar.  

I personally think you have too much that's not typical for MS, not enough for MS to be at the top of your list of possibles, but it would still be a good idea to discuss alternate ideas with your dr.

Cheers............JJ

[immisceo]

Hi there. There's a lot of good info on our health pages. http://www.medhelp.org/health_pages/list?cid=36 Loads of things over there that will likely address some of your questions, particularly those related to MRIs.

It probably should be said that due to the nature of MS (symptoms caused by inflammation in specific areas of the central nervous system), the way you describe your symptoms will likely have doctors looking at other things as being stronger possibilities (spinal/disc or circulatory issues as an example). Things usually (though not always) show up on one side of the body and one area of the body at a time in MS. For example, someone with a numb right foot or left eye issues will be seen as more likely to have MS than someone with more general, bilateral issues.

The information you have seen on the lumbar puncture procedure sounds either old or misinterpreted. Plenty of us here with a diagnosis either never had one done, had zero bands, or had a somewhat ambiguous result (2 unique to the CSF versus 4). It's more used for guidance or a 'final seal'. As MRIs get better and (hopefully!) biomarkers are finally found, it's less and less of a necessary part of an MS workup. But no; lumbar punctures on their own tell a doctor very little. MRIs can tell them a lot. Clinical exams tell them even more.

[stephieZ22]

I wonder if I should just be a surrogate mother for the next 10 years so my symptoms could go away lol

[stephieZ22]

Thank you Zoe for taking the time to answer my question. Would be you willing to share your story? I have read that 90% of MRI's including the weaker T1.5 ones show lesions when they are present. I wonder why they don't do the lumbar punctures anymore?

Yes I had an MRI with contrast done of the Cervical Vertebrae, The Thoracic Vertebrae, and the brain.

[zoefromsussex]

Hi Stephie,
I just wanted to say that it's quite common for ms symptoms to flare up post partum and I had my first big flare around 4 months after my youngest son's birth. I was told by my neuro that symptoms often ease during pregnancy too but he didn't explain why this is! Anyway, with regard to your questions: did you have an mri of both your brain AND Cspine? Because sometimes one area might not have any lesions but the other has. As for the LP, they are not routinely performed these days. Only if your doctors think ms is likely and just need to double check (or rule out mimic conditions)  Also, lesions don't always show up from symptoms so there isn't really a definite answer to that part of your question. There are an awful lot of people on here in limboland so I'm 'guessing' that yes its possible to have normal results but still have ms and it's definitely possible to present without eye symptoms (though eye issues are common). Not everybody gets the same symptoms, in fact that's one of the things about ms in that it causes so many different symptom's! If you have bothersome symptoms you could always go back to your doctor and request further tests but they may prefer to watch and wait to see if you have further symptoms or a flare up. I'm sure people with far better knowledge will be able to give you further answers but hope this helps in the meantime! All the best, Zoe