Could it really be MS?

Hi,  I have been having strange symptoms since the birth of my 2nd child.  Both my GP and I chalked it up to stress at having 2 small children and going through a possible autism diagnosis for my son.  Then istarted having eye pain and was diagnosed with ON.  I had an MRI and the results came back as normal for my age.  About a month later I had another episode of ON.  I was unofficially diagnosed with MS and have a second MRI in February.  I'm very scared.  The symptoms seem to be getting worse and I have 2kids under 2, both now showing signs of autism... Where do I find the strength to deal with this too?

[Sidesteps]

Oh my goodness --- big hugs to you. I'm sorry you are going through all this.

Other than the ON - what other symptoms are you having?

[bubbles_04]

Hi Mummy, Welcome!

I'm sorry you are in this situation, it is a scary place, I'm there too.
i'm either newly Dx or a limbolander, I'm really not sure but its looking like  def MS. My GP told me I have it... They found some lesions on my MRI.

If they didnt find any lesions on your MRI this is good news (I think). It could all be stress BUT if it does turn out to be MS, you will be ok. It's not going to kill you, there is a great resource of support and education here and in the UK (your from the UK right?). There are also treatments to help reduce progression! I know you must be a strong women to handle two kids under 2, let alone the possible autism! So you can handle MS if you have it. For now *hugs* stay strong and keep dropping by. We will be stronger together. Thinking of you!

[michelleric]

So sorry.  You have so much going on...I feel for you. Life is hard enough with young children, and then not feeling well, makes it even harder.

Thinking of you,

Michelle

[Mummy76]

I'm no longer sure what is a symptom or not, there were things I never considered to be a symptom that my neurologist thought might be...

When I was first pregnant I developed Interstitial Cystitis (although I've now learned that it may have been a sign of MS), after my son was born I had pain in my calf muscle but it went away after I conceived my daughter.  After my daughter was born the calf pain came back, along with a weird sensation in my big toe, like there was a hair wrapped around it.  Shortly after the top of my foot went numb.  I started having muscle spasms and just recently I was dizzy for 3 days.  I also get horrible restless leg syndrome!  (Any suggestions for that?)  I'm not sure if the ON has never fully gone or I keep having minor repeat attacks but the pain keeps coming back along with blurred vision but doesn't last very long.  So those are my symptoms.  

My first MRI was done without contrast so that could be why no lesions showed up?

[bubbles_04]

Hi Mummy, does sound like MS but so many symtoms (symptoms) can sound like MS!! Its very hard to tell at this stage. As for your MRI, without contrast will show you old lesions (correct me if I'm wrong) and contrast will highlight new lesions (but I think they can be seen without contrast too, just can't be aged). So its possible that you have no lesions or lesions too small to be seen by the MRI, or your lesions are in your spinal cord so couldn't be seen on a brain MRI. My brain MRI report said I might have one in my neck area too (C3) but would need another MRI to confirm. My GP is leaving it upto the Neuro to decide if we should look there.

I'm hoping mummy this is NOT MS for you. Do you eat right? make sure you get all of the vitamins your body needs with a supplement or something. I think a B12 deficiency can look like MS too. I would stay on top your doc, GP's just love to send people home with stress BUT you know your body. My thoughts are with you x

[Sidesteps]

I apologize in advance - this will be long.

Yes, your lesion(s) might've been missed because they didn't do the MRI with contrast --- the thing is with ON it's very very hard to see lesions on your optic tract (or any cranial nerve for that matter) so they usually confirm ON with a test called a VEP. It reflects a slowing of your visual responses between your eyes and brain. I had so many vision issues they repeated my VEP (visual evoke potential) twice due to a slight abnormality in part of the test.  

When I finally saw the Neuro-Ophthalmology (a year later) I was estatic and had so many questions. I was lucky to get into one of the best clinics in the area. She was awesome for me! She was the one that went through my MRI and showed me where the lesions were (when the MRI report didn't show any.) She showed me my test results and indicated that my optic nerve has atrophy (with a special test called the OCT) and it appears to be MS. The VEP lines are screwy but it wasn't ON. I had TN and layers of other issues.

Also, one of the Neuro's I saw indicated that having ON without lesions on the MRI the statistics are very good that you will not have another attack or if you do it's a very long time (I think he mentioned 10 years but dont' quote me on that.) That doesn't mean they won't treat you like you have MS but it's technically referred to Clinically Isolated Syndrome.

If your brain MRI is "normal for your age" how are they determining you have MS? (That would be what I would be asking.) It is good you don't show lesions. I know it might not seem that way but the statistics show you have a better chance of a less aggressive form of MS and may not even convert to clinically definite MS.  You may just have one attack and never again :)

It sounds like they are jumping the gun with you a bit to me. I know that doesn't make you feel better or less sick but there are so many other possibilities. There is a host of tests that need to be done - lyme, vitamin b, thyroid, myeloma, lupus, sarcoid, connective tissue diseases, etc. This is the 3rd time I've had some of these tests done. Crazy huh?

So, I'm surprised they said this to you with a normal MRI. My PCP stated that it could be atypical migraines (this was tossed around a lot this last year but my MSologist finally took that off the table.) It just that there ARE so many other possibilities - each one needs to be ruled out as well as confirmation that you really had ON with a VEP - but I am glad they are repeating a new MRI and following you closely.

The MRI in February show any missed lesions that would have enhanced from the previous MRI. They missed my opportunity as well, my Neuro opted for a CT scan when I was flared initially then waited 6 weeks for the MRI. The lesion showed faintly on that MRI and then over the next few MRIs it showed more definition. They change with time.

Take a look at the health pages on the mid-upper right side. It is a wealth of information. It hopefully will give you the knowledge to help bring you some comfort and ability to ask the right questions. For me, it (along with the veterans here) helped me realize what was a legitamate symptom which gave me the strength to keep moving forward.

I know you can do this. Try not to think the worst. I know it's hard when you have so much being thrown at you. I had three kids in three years, two happened to have chronic severe asthma. My third has ADHD. Their father died when they were 9, 7 and 6.  I didn't know how I was going to deal with it but as Moms we manage to pull strength from our hearts and keep moving forward. One thing that has brought me comfort with all this is if it's MS then it's early (in your case, with no obvious lesions) and you will feel better soon. The ON will resolve and you will better. You can do this. We are here to support you. *hugs* :)

[zoefromsussex]

Hi, sorry to hear you're having a rough time of it. There are some lovely people to talk to here so I'm sure you'll find it a big help. How old are your kids? Only MS symptoms can flare up soon after giving birth. I got ON in Oct when my youngest was 6 months old. At first I put it down to sleep deprivation etc. I hope you get some answers from the next mri. MS may be a scary thought but so is living in limboland. Personally my mri showed lesions, my LP showed o.banding and I have a history of transient tingling but STILL no dx! I'm being referred back to the neuro now though coz of weakness/numbness. Was your 2nd bout of ON in the same eye and did you get your sight back?
I hope you'll post how you get on. Take care, Zoe

[Mummy76]

I think they told me it was MS because I had two bouts of Optic Neuritis seperated by over a month in time.  I often wonder though if it ever really went away.  It seems to come and go so quickly.

I don't know that the MRI showed no lesions, only that it was normal for someone my age which I thought meant some lesions but not attributed to MS.  My SIL has a friend who's a neurologist so she had him review the MRI results as well along with his students.  They all agreed that nothing on the MRI indicated MS but that with my symptoms other tests were required.

The ON popped up when my DD was nearly 6 months old and I know the doctor mentioned that MS flares up after childbirth.

I have started taking B12 supplements even though my results didn't show I was deficient.  I don't eat properly although I am trying to be better.  

Every day I feel differently about it all... some mornings I wake up and think, if it is MS, I'll handle it and I feel so strong, some days I just cry about it and others I'm in denial, I keep looking on the internet for things it could be other than MS...

Thank you all for your support.  It is such a scary time.

[Mummy76]

I forgot to reply - yes my vision does seem to return to normal and the pain becomes very mild.  Good luck to you too with all your tests.  Even with the lesions your doctors still feel it isn't MS?  I know my neurologist was initially not too concerned about my symptoms as she said lots of women suffer strange neurological symptoms after giving birth but what concered her was the ON and the constant numbness in my foot...  It would be lovely if this were just a complication of giving birth and that eventually it would all resolve!

[amyjaq]

When you figure it out, let me know.  Hurting like this makes the emotions run so high.  I am the kind of person that likes to be in control, and not being in control of my own body is driving me crazy.  I hate not knowing and I hate worrying constantly about being a burden on others because of my pain.  I feel like no one understands.