In Limbo

[kelbel3078]

Hi everyone.  I am new to this website.  I am a 31 yr old female.  I have been experienceing MS type symptoms for about 8 months.  Feel free to read my journal to get more info.  

It started 8 months ago when I woke up to my whole right arm, from my elbow to my fingers, to be completely numb and hard to move.  It felt like it weighed 500 lbs!  It lasted about 15 minutes and then turned to shooting pains from my fingers to my shoulder.  My Dr thought I had carpal tunnel.  It soon spread to my left side.  

I have neuropathy in my hands and feet.  It is worse on my left side.  I have slowed reflexes on my left side.  I have loss of sensation in my hands and feet.    Numb areas, along with parathesis.  I have shooting deep pain in my feet, legs, forearms, left side of my back and neck, knees, hands.  I get headaches.  I have visual snow.  Blurred vision that comes and goes.  At one point one of my pupils was bigger then the other.  My hands and feet just don't work like I want them to.  My depth perception is awful.  Mental slowness, slurred speech, I will say things backwards.  I can see sound, and hear pain.  When I have my eyes closed and there is a loud noise I see bright white lights.  When I am in pain I can hear it in my ears, it sounds like a burning, buzzing sound.  The list goes on and on and on.

My MRI's have been normal.  My LP was normal.  I tested neg for Lupus and Lyme disease.  I tested negative for everything.  I am slightly Vit D defienct.

I look in the mirror and I look different.  I see someone who is exhausted, and wore out.  In one night my world has changed.  The last 8 months have been awful.  I am starting to get used to the pain and the fact that my words don't come out right.  

I don't know what to do.  I don't know where to go.  And I don't know who to talk to about what to do next.  Any help would be greatly appreciated.  Thank you

[scaredguy309]

Hey, what you're going through is not the worse or the most unusual i've seen here. If it is MS your lack of positive results in the MRI and LP means that you are in the earlier stages...the only thing you can do about that is take the wait and see approach...Until then, you can work with your docs to get rid of any other mimics as possibilities and get you on meds to control the symptoms. That is if its MS, if its not then don't give up on getting a dx

[Heather3418]

Hi and Welcome to the MS Forum.

I am so sorry that you are having to endure so much pain.  So many of us here can totally relate to that.

Even though you have had negative MRI's, LP and numerous other tests, the one thing that jumped out at me right away is the fact that you have a one year old son and you say your symptoms started 9 months ago.  Did you have any of these symptoms you describe before you got pregnant with your son?

In MS, it is widely known that women experience a "reprieve" of most symptoms while they are pregnant and several months after giving birth, they complain that their neurological symptoms return.  Which yours ARE neurological.  I am sure you already know that.

You unfortunately have a doctor that cannot make up his mind and is not doing you any favors.  Is it possible for you to find a doctor that specializes in MS and MS only?  5% of people with known MS, do not show any lesions.  It is thought, that with time, the lesions will show, if they are there.

Do you know what strength MRI machine you had your MRI's on?  A 1.5T as it's called, is one of the weaker machines, especially when you are looking for lesions.  A 3T is the best - with a full MRI of the brain and entire spine, with and without contrast dye using what is called "MS protocol."  If you have not had one of these kinds of MRI's done, it probably would be ordered by an MS specialist, hopefully on a 3T rated MRI machine.

The best advice I can give you, is to find a doctor that will not stop looking, until he has answers.  There is something wrong and someone needs to work hard to find out what it is.  Good doctor's are hard to find, even good MS specialists.  Finding one that will work hard for YOU, the patient, is one of the hardest parts of getting a diagnosis.

I hope that you will stay with us and share the ups and downs.  Throw questions at us and we will see if we can be of some help.  We aren't doctor's but those of us with MS and even those without a diagnosis yet, can offer information to you, that you may find extremely helpful.

I sincerely hope that you can find someone that will help with your pain and hope that you can find a good doctor in your area.  It really is time to part ways with the one that you have.

Best Wishes,
Heather
diagnosed with MS in 1995

[Lulu54]

Hi and welcome to the Medhelp MS forum.  This is a great community of very informed consumers, like Heather.  I hope we will see you around here often. Its quiet tonight because of the 4th but there are over 100 active members here to help you through this.

I hope we will see you around,
Lulu

[kelbel3078]

Yes I do have a 1 yr old son and a 3 yr old daughter.  Plus I was pregnant and had a miscarriage inbetween my two full term pregnancys.  That is interesting.  I only symptoms that jump out at me before I had my first pregnancy was chronic headaches and visual snow.

Do you know if if can make your symptoms severe after pregnancy?  Especially because I had 3 pregnancies in such a short period of time.  I want all the info I can get before my next visit.

My MRI was T1 and T2 weighted scan.  Does that make sense?  I did have one with and w/out contrast.  I have had one of my brain, neck and lower back.  

I didn't know that you could see a MS specialist without having MS.  How can I get in to see one.  Do I have to have my neuro referr me?

Thank you for your advice!

[Lulu54]

Good morning.  

There is lots written about pregnancy and MS.  The MS seems to *hide* during gestation and most women report feeling very good during their nine months of so.  The thinking was that after pregnancy, the MS will often reemerge in a pretty dramatic way.  Hormone levels have somethingto do with all of this.  A recent study suggests strong evidence that nursing after childbirth helps to reduce the MS symptoms too.  If you google any of those topics you will find lots of reading to do.

A 1 year old and a 3 year old?  Lucky you but no wonder you are tired.  That's exhausting work to keep up with two young children.  I hope you nap when they do.  :-)

The T1, T2 does makes sense.  I think Heather was asking about the strength of the MRI machine - usually it is a 1.5 tesla or 3.0 tesla machine - referred to as a 1.5T or 3T MRI.  This is the strength of the magnetic field of the machine.  The stronger the magnetic field, the greater the imaging capabilities.  

MS specialists are neuros who concentrate primarily on MS patients, the diagnosis process,  and advances in treatment.  A general neuro will have general information, but they are also tracking 100's of other neurological diseases so they can't necessarily specialize in MS.  You could ask your neuro for a referral, but I would caution you that physcians and especially neuros tend to have mighty egos.  Asking the neuro to send you to a *better* doctor may create some uncomfortable moments for you.  I would talke to your GP or PCP and ask if there are MS specialists in your area - you may have to travel to see one.  I drive 70 miles for mine, but it is worth it.  I only see him every six months since the initial diagnostics appts. - unless there is a problem so its not that often that I make the road trip.  

I hope this helps.

until later,
Lulu

[kelbel3078]

Thank you for that.  I would love to see a MS specialist.  It so intimidating and I haven't had the best luck with Drs lately, so I get nervous seeing new Drs.  It's like you start to expect them to not seem to care, or want to care.  I feel like they think I am crazy, or that it is all in my head.

I haven't been to my reg. Dr since all of this started, maybe I should go back and talk to him again.

Thanks again. :)

[gorlie]

Kelbel,
Did they check your vit B12  and D??  B12 defiency can mimic MS .  

[kelbel3078]

Hi there.  Yes my B12 level was normal.  I was slightly vit. d def. but not by much.  I am taking vit d supplements.

thanks everyone for your support and advice.

[AmishErin]

I was Diagnosed in 2003 with many of your same symptoms.  I couldn't get into see a neurologist at the time... I had to wait like 4 months, all while having these scary odd symptoms.  It was a PA who actually ordered my first MRI for me but then he didn't know how to read it.  When I got into to see a neurologist finally he had told me that I had 11 lesions 4 of which were bigger than 1 inch in diameter.  

I was told at that time that i definitely had MS and that I was lucky since most people with MS suffer for an average of 5 years before getting a diagnosis.

About 18 months ago I had another MRI on the brain and spinal cord.  This MRI showed no lesions at all.  With or without contrast.  I am guessing that the timing of an MRI is very important for diagnosing MS.

Good luck
Erin

[kelbel3078]

I am sitting her with my mouth gapeing open!  Lesions that numerous and large, and they disappeared.  I never knew that lesions could come and go.  I thought that they came and stayed.  Do you remember if you were having a flare at the time of your first MRI.  Everytime I have an episode (flare?) my neuro won't see me, he just adjusts my Gabapentin over the phone.  He has his nurse call me.

No one ever told me that MS's go on average of 5 years without being diagnosed.  That is so crazy to me.  And it scares me.

Thanks for shareing that with me it puts a whole new perspective on things.

Kel

[green924]

Hi... Not sure where to start! I have a lot of symptoms similar to yours, but I'm not thinking clear enough to list all of them & I feel insane because they move and change so much. The CRAZY thing is mine all started more than 9 years ago when my only child was about 3 months old.
Had an abnormal MRI in 2002, but the neuro I saw then said I didn't show all symptoms. Since then I've been back and forth to so many Dr's and just yesterday had a new appointment with a different neuro (referred by my rheumy). I have been given so many POSSIBLE DX's but no one will decide on a definate one. Hope you have much better luck!!!!