Anybody have answers for me?

[jessiesmom]

Hi and thanx for taking time to read this and giving input to help us out!  I have a 19 yo daughter with several MS symptoms ie>numbness, tingling in hands, right sided weakness and spasticity arm and leg, tremors in both legs at night and at rest, memory issues, swallowing difficulties, pain in hip and leg, etc...  She had an MRI  a year and a half ago which states: a couple tiny foci bright signal Flair in the right frontal deep white matter and left basal gangli.   We were told possible MS, but found out she was pregnant at that time and were told sx due to stress, so forget about the MS.  She didn't have any symptoms for the duration of pregnancy so we agreed probably stress related.  Well, baby is now 9 months old and symptoms are back, plus more!  They come and go but seem to be much worse than before.     ANY IDEAS??????   thanks for your time, Dawn

[jessiesmom]

Alright you have all helped me so much!!!  thanks for all your great advice---  I will keep hounding Kaiser and her doctor and i will keep you all posted.  I sure hope you all have a great and uneventful day!!!!!   dawn  (unless they are good events!)

[Quixotic1]

Hi, you've gotten a good welcome to the forum, but I want to add mine.  Your daughter's symptoms, as Heather  emphasized, are begging to be worked up for MS.  Calling the symptoms she was having as "stress of a pregnant woman" is sexist, lazy and pretty dimwitted.  Heather is correct.  MS typically improves remarkably during a pregnancy.  Most of the mimics of MS such a s autoimmune vasculitis and infections become worse during pregnancy when the pregnant woman's immune system is somewhat suppressed (to keep Mom from "rejecting" Baby).   Lyme Disease, Lupus, and most of the other mimics flare-up during pregnancy, but MS subsides usually, only to rear its head in the months following delivery.

It doesn't sound like MG if she has increased muscle tone or spasticity.

I trained in California.  You can get Kaiser to move, but you have to stay on them and demand action.  It is an organization that responds to its squeaky wheels.  She needs a new neuro eval and a repeat MRI of her brain AND her spinal cord, cervical and thoracic.  All the MRIs need to be done without and with contrast to make sure they see any new lesions.

As part of a workup for MS they have to run the tests (mostly blood tests) to rule out MS mimics.  It is not unusual for someone with MS to have autoimmune disorders in the family or for themselves to have another autoimmune disorder.  I do.  I have Autoimmune Inner Ear Disease and MS.

I hope you stay with us and keep us posted on Jesse's work up and she is also invited to join us.  

Quix, MD (unofficial and not a neuro)

[jessiesmom]

You all are so wonderful and I feel justified in my thinking now.  It is so hard to find someone to listen to my concerns.  Thank you all----I have read a lot on here today and you are all going thru so much yourselves, and for you to take the time, well...thank you!   No, Jessie is not on meds because...well...we have Kaiser, slower than molasses and even less concerned for the most point.  Everything takes time, which I understand...but she and my grandson live with me.  I work all day and she has had a couple episodes where she almost dropped him due to her arm spasticity....Yeah, I am concerned.   And before the past week or so, she kept a normal teen reaction(it will go away)  Now she is nervous because everyday is something new.  
So, what other illnesses could this be?  What else mimics MS?  I myself have myasthenia gravis so understand weakness, but her symptoms are somewhat different and she doesn't have the problems I had before starting treatments.   Also, with me having an autoimmune disorder, do you all find that it tends to "run" in families?  I know my MG is not hereditary.
Well, Bless you all and thanks so much for every comment and prayer.   I will be praying for you and your families also and saying an extra one tonite for this website!!!! =}    DAWN

[Heather3418]

I cannot imagine, being a parent myself; how frustrated you must be.  What 6-paq (Pat) told you about MS symptoms, pregnancy and delivery; is so, so true of someone with MS or possible MS.

With a positive MRI already done, the lack of symptoms during pregnancy is a RED FLAG to any competent Neuro.  Now that the baby is 9 months old and your daughter is having symptoms, it is imperative that an MRI be repeated.  If your daughter's MRI matches physical symptoms and now a definite remission and relapse, this is very indicative of MS and how MS presents itself.  

Of course I have heard people being diagnosed with MS at such a young age, but it is rare.  So be open to the possibilities of something else going on, besides MS.  

Having MS myself and being diagnosed for 12 years now, I am highly suspicious of MS at this point.  I rarely come out in this forum and say that.  There are many medications your daughter could be on RIGHT NOW that can help slow the progression of MS, if this is indeed MS.  Waiting serves NO purpose, but to allow further problems to continue.

From one parent to another....I feel your heartache.  Please accept my prayers for your family.  

I hope that you will keep us posted.  I would really be very interested, as age 19 is so young to present with MS.  Rare, but not unheard of.

Best wishes to you and your daughter, Heather

[essdipity]

I can so well understand your impatience. It's awful to have to more or less stand around when someone you love is suffering, all the while waiting for doctors to do something. So many of us here are in that boat, with various appointments even several months away.

If you live in a fairly urban area with a good selection of medical services, why not try another doctor, one who you're sure knows a lot about MS? I get furious over the cavalier attitude of some doctors, who if they're at all human should know how worried you are. I bet if it were their own family member they'd suddenly see the light. And try to find another MRI location. At least it won't hurt to look, and it will help you to feel that you're doing something other than waiting.

Meanwhile feel free to vent here whenever you need to.

ess

[6-paq]

Welcome to the forum Dawn.

I agree that Jessie needs to see a neuro and get re-evaluated.

It's very common for a woman with MS to have her symptoms lesson during pregnancy and then go into an exacerbation within a few months after delivery.  Although she may not have MS, she does fit that pattern.

I think that neuro was a bit lazy and unconcerned to blame her symptoms on stress, especially if she had small brain lesions found with her MRI.

I can understand your concern and impatience having to wait for the MRI.  It is very frustrating not to know what is going on, especially when it's your child that is going through this.

Is the new neuro giving her any medicine for her symptoms?  Did he mention the possibility of MS to you and Jessie?  

I wish you both the best!   Please keep us up to date and don't hesitate to ask any questions.  I'm sure someone here may have an answer or advice for you!

Take care! Pat :)

[jessiesmom]

Thanks so much for the welcome!   We do have another MRI scheduled but its not for another month and she just went to a new neurologist--I am not a patient person with this. My bad, I know it, but this kind of stuff makes me crazy--the waiting.  The neuro wouldn't give us ANYTHING to go on--just wait for the MRI he said.  I have been on this website all morning and am learning a lot, so thanks for your reply.   dawn

[essdipity]

Absolutely, Jessie needs a complete neuro evaluation now. She should get more MRIs, with and without contrast, and of the brain and spine. If at all possible have her seen by an MS specialist, because neurologists in general are notorious here for not being proactive. There are also lots of other confirming tests that can and should be run.

Read through lots of these posts for more information because it's one of the best sites I know of, and feel free to ask any questions. Many of the people here are awaiting diagnosis, many have confirmed MS, some have other similar diseases, but virtually all are very helpful and supportive.

So, Dawn, welcome to the MS Forum, and keep in touch.

ess