New here...Doc thinks it might be MS

[rachie204]

Hi all.  I am not new to Med Help (spent lots of time in the Pregnancy forums while hubby and I were Trying To Conceive the last 2 years) but I am new to the MS Forum.  I have some questions and hope I can pick some of your brains....

My husband will be 23 next month.  About 4 weeks ago while in the shower he had an extreme pain shoot through the bottom of his head where the head reaches the neck on the rt. side.  The pain was so extreme that it nearly knocked him to the ground.  The weeks following have resulted in very painful headaches every day that are not helped entirely by meds.  We finally got him to go to the ER about 1 1/2 - 2 weeks ago where they checked him out and did a cat scan.  They said the cat scan came back fine and that it didn't sound like migraines but they were not sure what it could be.
Today he felt so bad he called in to work and decided to visit a family practice doctor.  The doctor became very worried when he checked my husbands eyes...he said that his eye function is not correct.  He asked some colleagues to check him out and made some phone calls.  He said worst case it is possibly a brain tumor, he said second worst case would be MS. They set him up for an MRI for tomorrow, Eye doctor Wed, setting up a neurology appointment , did some blood work and said he wants him back in 2 weeks.  My husband has wore glasses for years and no one else has mentioned this eye thing so the doctor is pretty sure it is something new.
I was just wondering if this sounded similar to any of your experiences...The doctor seemed frazzled and talked a lot about MS.  He told my husband to be concerned.  "Don't worry but you do need to be concerned"  Well naturally I am worried, we have 2 children (5 yrs and 10months)  I am so anxious and nervous.  Anything you could tell me would be appreciated.  Thanks in advance...

[Lulu54]

Hi Rachie, Its horrible that all this has been thrown at you this way -

the best advice I can give you is do exactly what you are doing - educate yourself with every thing you can find about MS.  We have great health pages here - be sure and take advantage of them and read as much as you can.

Understand that except for the extremely rare form of MS, this is not a fatal disease.  Most people with MS will live a fairly normal life just like the rest of the population.  

Don't let the images of people with MS scare you - the majority of all MS patients won't even need assistance (canes, crutches, wheelchairs) to get around.

Perhaps your doctor seemed frazzled because he is not particularly familiar with MS and living with MS.  That is not uncommon - so many GP's never encounter an MS patient in their practice and only know a small bit from med school and the books in their office.  

I hope you will come through and ask all the quesitons you need - we're here for you as you face these unknowns.

my best,
Lulu

[biowham]

My guess is that the doc saw uneven pupil dilatation, the pupil responding in one eye but not the other, something like that. Or, the doc may have seen a pale optic nerve, which is related to a condition called optic neuritis that is usually transient and closely associated with MS. As your doctor mentioned, there are several differentials to rule out for either of these, and MS is one. If it was some huge tumor or something, the CT would probably have picked that up. MRI will pick up smaller lesions, including smaller tumors and lesions (in this case, scarring) related to MS.

As Lu says, MS is almost never fatal except for a very rare form, and the disability that results from it varies enormously depending on type, progression, age at onset, disease-modifying drugs, and many other factors. But right now, all you know is that your husband's eyes respond strangely to testing and his CT is clear. Keep us posted on what the MRI results are.

Bio

[ShadowsSister]

Hi There, you must be feeling like you have the whole world rest on your young shoulders. I am so sorry you and your husband are having to go through this. I know how very scary it can be to hear he might be facing MS. IT can be quite scary. But Lulu told you the real Truth. MS doesn't kill you. In some ways it will change your lives, but there is no way to predict the future.  No one can tell any of us what the future might hold. I have lived with MS almost 24 years and have many more years ahead of me I am sure.

So make sure you and your husband keep all lines of communication open.

Talk frankly and honestly with each other.

Don't allow him to close down, this happens some times, because they want to protect their partner in life.

Let him know you'll stand by him NO MATTER What the Future holds.

Go to the Dr. visits with him, educate yourself.

Let each other cry if that is how you feel at the moment.. Tears aren't a sign of weakness, they can be very healing, they sure DON'T Mean either of you aren't Strong, it is just the opposite, it takes a strong person to share their Tears.

In Other words don't try to hide your real feelings. If it happens to be MS he is facing, than you are facing it too.. It affects everyone connected with us..No it isn't Fair, but since when has Life been Fair all the time..

Rachie, I hope you'll stay with us, you'll find amazing support with in our group. Some of what you'll read won't pertain to your husband, but others might. You can express your feelings here with the fear of being judged.. When and if he is ever ready to  check us out we will all be here for your husband too...

You take care of yourself, get as much rest as you can, remember to laugh, and most of all Breathe, Breathing is a very good thing....

Sending you gentle hugs on the winds, so when ever you feel a breeze blowing by, just tell yourself that DJ just sent me to a hug. {{{{{{{{{~!~}}}}}}}} DJ
My thoughts and Daily Prayers are with both of you..

[rachie204]

  Thank you all for your encouragement...

I had an aunt who has MS and did become reliant on a wheel chair and died around 55 so I was very glad to read that MS suffers have a normal life expectancy.

From what the doctor said the eye function issue is seen when hubby is trying to follow something with his eyes...apparently your eyes should flow smoothly and his sort of lag behind and then try to catch up quickly appearing somewhat jumpy.

We went for the MRI today...they said we should know something within a few days.  Hopefully sooner than later.  My stress level is on the rise, on top of all this with my husband our 5year old severely asthmatic son has the flu...(not sure if it is H1N1 or not) and can't seem to get his medicine down without throwing up...and to top that off his insurance is inactive for the next few weeks so I am praying we do not end up in the ER with him.

Thanks again, I will keep you all posted on Adams progress...I know that God's will will be done.

~Rachel

[biowham]

Hi, Rachel--

That's nystagmus. It can be associated with many things. Let's see what the MRI results are.

He can't keep the Tamiflu down? I'd suggest calling the doctor. They may have something that will help him keep the med down.

Bio

[sllowe]

Hi Rachel,

Adding on a belated welcome.

Your general MD is all over this with ordering up the eye Dr. and the MRIs. Lots of tests may follow to include evoked potentials that may identify the lag. If he hasn't had nystagmus since his youth, something is going on but it sounds like you are in very good hands and quickly.

I hope you were able get something for your son so you can unfrazzle. Must be a very trying time.  Wish your hubby well with his test for us, and know you've got a new batch of support over here.

-shell

[rachie204]

Well we went to the Eye Doc today and he seems to think that hubbys eye function is for the most part okay, they did some Visual fields tests and those apparently looked good as well.  (I'm confused to why one doc says one thing and another says different)

His General Practice doctor called today and said they want to see him first thing in the morning, not sure if they said this because they have some results back they want to talk with him about or if they want to see him because we left a message with the nurse that hubby had caught the flu from my son.  I guess we will know a little more tomorrow...I will update here when we get done there tomorrow.

Thanks for the belated welcomes...also our son got almost all better without the meds...Thank Goodness!   Now I have a $150 prescription going to waste in my fridge...lol

[rachie204]

Sorry it took me so long to update...(sick 10month old)...anywho the doctor was shocked to see that his eyes had shown a huge improvement since the appointment a few days before.  He said he is not sure what would cause such a drastic change but insists that he still go to his neurological appointment this wed just to be safe.  They said his blood work came back fine.  They tested him for the flu and it was negative but said that he did have a sinus infection...his head is not hurting for the first time in a month...Is there a chance all this was from a simple sinus infection?....would a sinus infection have caused the strange eye movement? Still have not told us the MRI results which I think is ridiculous....it doesn't take a week to read an MRI.

[Lulu54]

This is sounding like pretty good news . keep that appt and let the neurologist do his thing and hopefully send your husband on his way.  I will keep hoping this has been an exercise in learning that doctors aren't always right.

As for the sinus infection, they can reak havoc all over your body and especially above the shoulders.  Sinus infections can be difficult to resolve to and may linger a really long time.  

keep us updated this week, ok?

my best,
Lulu

[rachie204]

Well since hubby has missed lots of work from this whole ordeal he called and asked me to change his appt to a friday instead of tomorrow.  I don't think it is a good decision but they rescheduled for Dec the 4th (first friday they had available)...i'll update after that.  Thanks

[Lulu54]

except for the additional stress for you and your husband, the wait will not do any harm.  You're fortunate you don't have to wait 3 or 4 months to get a Friday appt.

find something fun to do while you are waiting, ok?

Lu