Hello

I am new to these boards, but have been watching them for a period of time now.   I appreciate everyone's input here, as it is so informative to those of us that are new to this process.

My name is Sue and  I believe I will soon be diagnosed with MS.   It's funny, ( not really funny) , but the symptoms I read here just put everything into perspective , things I have been experiencing for years, but just ignored them or wrote them off to my work.

I am 49 years old, and I have been a nurse for 29 years.  Alot of the symptoms I have probably been experiencing for the past 5 years,  I have written off to the years of picking up patients, pulling patients up in bed...etc etc.  

I have had numbness off and on in my shoulder for 8 years at least.  I have also had a pain off and on in my shoulder blades over the years.  I always attibuted that to a car accident I had in 1980 .  Over the past year,  the numbness stays pretty constant.  I blamed it on my sitting at a computer.  

Two years ago, I was shopping at Walmart and had an "episode" of where I lost my vision completely for a brief moment, and became dizzy and nauseated.  My vision returned quickly.   At that time, I did see a doctor and they worked me up for TIA's .  They did  a brain MRI and at that time there was a "sign" of early demilinating in one area , and the radiologist said they should correlate clinically for MS.  My neuro said he didnt believe it was MS , and thought it was just "rust" from migraines I have had occasionally.  ( i don't get a headache..just an aura )   So  I went on my merry way .

Now..the numbness goes down my arm and into my left hand from time to time. I am dropping things and I feel like my left hand is so weak.  ( I am left handed but quickly becoming right handed ).  My whole left arm feels weak.   I have also noticed over the last 6 months or so, I just feel so weak and tired.  My legs feel like weights.   Sometimes I feel like I can't think of a word.  I kept trying to write it off as stress....but something just didnt seem right.   I manage a busy nursing unit and have 65 staff, so I thought maybe it was stress..but I love my job..so how could that be :)  

Anyways...I figured it was time to see my doc.   I have other little symptoms...but being the nurse I am, I just keep writing it off to being tired and work.  I don't sleep well, and I wake up very stiff.  Old age and being over weight is my excuse.  

Well...they figure the numbness in my left hand is either carpal tunnel or ulnar compresson.  All tests negative.   So, she did a cervical MRI .  Ok..small herniated disc..i thought yippeeee....there is my problem !  I go see a neurosurgeon..he says nope.   He said the disc is chronic...and not causing my numbness.   He also said it wouldn't cause my shoulder numbness and shoulder blade pain anyways.  

So I go back to my original neuro guy that I saw two years ago and he ordered a brain mri and a brachial plexus mri to rule out somthing compressed in that area.  Brachial plexus normal.  Brain shows increased lesions on the white matter when compared to my exam 2 years ago.  It also says there is a definate increase in lesions within the pons.   Now I obtained my results on my own (being a nurse haha ) , and haven't seen my doc yet...but sure doesn't sound good to me.   I don't see him until Jan 17th so this is going to drive me nuts...but it sure doesnt look good, and it sure makes sense with the symptoms i am having.  The latest MRI , the radioligist also says in the final opinion that it's "consistant with MS " .    

Makes me a little angry that I , or my doc, didnt pursue this heavier 2 years ago when it was "suspicious".   I wonder if things could have been slowed......who knows...i am just rambling here.  

Anyway....are these white matter lesions what occurs?   I am a cardiac nurse and don't know a whole lot about neuro things..but I have a feeling I will be learning !  

Thanks,
Sue

[Heather3418]

Thank you so much for coming to the forum and posting.  Welcome.

Yes Sue, you do sound like you are going through the "MS testing."  I have MS and DO have a lesion in the pons.  Most of my lesions appear near the ventricules of the brain.  MS lesions have fluid around them, especially active ones.  I also have a lesion in my spine, but am due for a spinal MRI within a few days, since I am having more trouble in my spine.  The recent brain MRI showed numerous new lesions compared to an MRI of a year ago.  I am 54 years old.

Usually when a radiologist says consistent with MS, that's what they see. Now your need to have symtpoms that can be identified that are consistent with MS.  Relapses and remissions.

Please do all the reading you can on MS.  It will really be helpful for you to have all the knowledge you can.  This is power in knowledge.  You are your own best health advocate.  I think you already know that from being a nurse.

Please keep us posted about your progress.  You have a complicated medical history and as anyone will tell you, not all is caused by MS.  There are many mimics.  Your lesions ARE suggestive of MS, now more testing and physical exam will make the diagnosis, if there is one...

Again welcome.  Happy New Year to you and your family.

Heather

[sdear627]

Thanks Heather.  I have done so much reading my eyes are crossing lol.

One thing  I didnt mention, was on my neuro exam a few weeks ago,  my reflexes were hyper active.  That is when the doc said possible "MS" when   I asked what caused this.  

As for relapses and remissions...in my heart I think that is what I have been going through the past several years, always "writing it off" to work and stress.  

Fun fun fun.

Thanks for your support..and happy new year to you too.

Sue

[mooers777]

Welcome to this forum,

I know what you are going through with knowing and yet not knowing at the same time. Just stick to your guns about getting treatment for yourself. Reguardless of what it may be you are the only one who can feel you symptoms.

I hope you get the answers you need instead of going through years of limboland as most of us have or stilll are. You will find and make many friends here. I encourge you to reach out to the others here they have all helped me.

Know one is rude here or uncaring they are always supportive even if some don't understand exactly what you may be going through.

I hope to be of help to you Sue!

Goodluck with the doc on the 17th.

Your friend,
                  Kathy

[sdear627]

Thank you Kathy...I am sure I will have alot of questions as time goes on.

Right now I am trying to gather all the info I can so  I can ask alot of questions.  

I think my main thing will be to find a doc that specializes in MS, and go from there.

Thanks,
Sue

[Heather3418]

I think you are exactly right...it's finding that one doctor who truly understands MS...is the key.  Hopefully he/she will be a compassionate and caring doctor, right from the start.

I am not knocking any Neurologist when I say this, but I feel when it comes to the particular symptoms of MS, then a MS Specialist, is what is called for.  They are the ones that I feel, are most able to sort out all the testing and results that point to MS.

You are on the right track and your new friends are right here with you....

Heather

[gooddays]

If you are able to find an MS specialist, it would be excellent.  My experience with one of them was that I had to wait for three for him to see me, it took him 5 minutes in which he prescibed new tests.  He said that most of the test were performed in his office and of course, he need them asap.  My question to him was why do them again and he indicated that he trusted his technicians and his equipment not anobody elses.  I never went back

I think that the more you research you do the more you get to know your condition, if you have it, hopefully not and the more questions you can ask your doctor in order for you to understand  what is your body going through.  Don't let anyone who know less than you of the condition tell you story that are not true.

MS can be scary at times, but education in the field helps you a lot, speciaslly when you can understan d medical terminology.  Don't be discouraged with what you read either, not everybody ends in a wheelchair.  There are lot of people in high level position that have MS and they deal with it, but don't let MS rule them.

[grannyhotwheels]

Hi Sue,

Welcome to out family.  I'm sorry for what brought you here but I'm happy that you found us.  It definetely sounds like you belong here.

I was exactly like you in writing symptoms off due to something else.  When I look back over the years, I have been having MS symptoms and flares for possibly up to 10 years.  I just wonder how much damage could have been spared if my MS would have been caught earlier.  I'm sure you are wondering the same thing.

What's in the past cannot be retrieved so don't worry about that.  Think of the future and what you and your doctor can do to avoid further damage to your body.  You definetely sound like you have MS and you sound pretty sure that on the 17th you'll know for sure.  What ever is the outcome you are already a member of our family so you must remain.  We are kind of like the Soprano's, once you become a member of our family it's impossible to get away. lol

Hang in there and try not to worry too much.lol  I know, that's a stupid statement.  We are with you all the way.  Please keep us informed and let us help you leading up to your appointment time.  Now is when you need friends.

I'll be praying,
Carol

[Quixotic1]

Welcome to our forum and to a fellow member of the medical profession.  You've presented and interesting and very complete story.  I'll comment on it later, 'cause I'm too pooped right now.  But, I did bump up some of our "informative" blurbs for quick reading.  You can see them on the front page if you chose to view the forum by "Last Post".  It's a button at the top of the list of threads.

I included the most popular one "MRIs, Lesions and Symptoms", but there are others on Getting a Diagnosis, the History of the Diagnosis of MS and the McDonald Diagnostic Criteria.  Hope they help.

Quix (retired MD, but not a neuro, just a good ole' pediatrician)

[sdear627]

Gosh..I am overwhelmed by the welcome here !  YOu all are great !!!!!

And Quix..I just got done reading your WHOLE thread on MRI's lol.   I learned alot from your posts.  I will be interested in hearing "your opinion".  

Tonight we went to dinner at my aunts.   I was sitting there and began feeling like my lips were tingling.  Now I think I am reading too much , and starting to imagine symptoms..but it sure felt real.

I also was telling my hubby I recalled about 10 years ago....I did see a neurologist for that shoulder of mine.  I had really forgotten that.  I remember now he asked me if I was ever tested for MS, I looked at him funny and laughed and said no, but that was the end of the conversation . I truly think I have had sypmptoms for years and have always neglected them.  ( nurse syndrome )  

I am puzzled about the "lesions" on my MRI.   They have definately increased in two years...but they don't enhance.   So does that mean they aren't active?  Then why the symptoms?   Two years ago my same neuro doc said the spot that showed on that scan was most likely due to past migraines.   Now it says the spots have increased, and are consistant with MS.  I think if my neuro says the same thing..from migraines...i will just cry.  Now don't get me wrong....i dont WANT to have MS, but I want to know what this is.   I am tired of the numbness...the stiff joints..the spasms...and ovreall fatigue.  I also feel at times I walk into walls when i am walking down a hallway.  

Again...thank you ALL for the warm welcome..and i loved the Sopranos comment haha !  

I have a feeling I will be tracking my doc down at the hospital before the 17th.  

I just want to get a diagnosis...have my meltdown..get it over with...and work on a good life !  

Sue

[Quixotic1]

I'll be adding this part to the essay on the MRI's, but here is a quick (as if I am ever quick) explanation of "active" lesions.

There are two kinds of "active" that are talked about in discussing MS and MRIs.

The first is the active, enhancing lesion.  In this case the active part just refers to the new, "active inflammation" of a new lesion.  It is active demyelination.

The scarred lesions caused "active symptoms" because the nerves are damaged and malfunctioning.

In a sense all lesions are active in terms of disrupting the normal function of the body.

It would be unusual for the WML (White Matter Lesions) of migraine disease to cause widespread neurological symptoms.  I believe one of the greatest mistakes the mediocre neurologist makes is to see a person with neuro symptoms and findings, do an MRI looking for lesions, and then to DISMISS the lesions as just normal for age.  What the?!!  That was done to me.  I had one good sized, out of place brain lesion when I presented with RLE weakness and spasticity and my neuro wrote it off as a UBO (Unidentified Bright Object) and normal for age.  He delayed my diagnosis for 2 and 1/2 years with that little bit of circular, nonthinking.

Sue, we all know you don't want MS.  But, you already know you have something very wrong going on in your body.  You want a name to it.  You want to know your enemy, to have a target, to have something to research and learn about.  You can't fight against what isn't named or known.  You want an answer!  There is something tremendously schizoid about the sense of relief (for me almost jubilation) when the diagnosis was finally said.  Being in diagnostic limbo was far worse than coming to grips with a known disease - thought I don't like the disease very much.  I've tried it.  Don't like it.  Would like to return it.  Don't remember signing a contract.....the salesman must have been a real hottie....

Of course you are walking into walls and missing doorways big enough for double wheelchairs.  I figure God put up walls and doorjams to keep us on the path.  Sometimes I feel like I'm in a great cosmic pinball machine!

Quix

[sdear627]

A pinball machine !!!!!!  That is it....that is me some days !!!!!!

Too funny...thanks for the laugh tonight..and THANK YOU for the information !!

I feel better already just reading things here..knowing i am not totally insane :)  


Sue

[sdear627]

One other questions Quix  ( yeah right..one question haha )  .....as far as active lesions....so...if I am currently having symptoms.......then that could or does mean a new lesion is forming...but may not show as "enhancing" yet?  

Does that make sense?

Thanks,
Sue

[Heather3418]

I hope that you don't mind me posting to your question.  Your lesions do not have to be "active" for you to be having symptoms.  The symptoms come from damaged areas in the brain or spinal cord.  They can be from old lesions (scars) or new lesions.

If you have a "new or forming lesion" it will highlight with contrast dye.

Heather

[sdear627]

ahhh thanks...that clears up "that" question lol..i am sure there will be more !!

[Heartshome]

Welcome to this forum. I'm glad that you found all the great information here. I hope that you will soon know the reason for the problems that you've been having. There are so many knowledgable, caring people on this site. Keep us informed of your progress!

[sdear627]

Thanks and I sure will.  

The more I read here, the more I learn.  

Thanks,
Sue

[sdear627]

I think I am reading too many things since I saw my MRI report.

Last night I had bad spasms in my shoulder and upper arm all night.

Today I feel like my middle toes on both feet tingle.    Then..we went to the store today....my feet felt heavy......tingly.    In the past..i have always blames these symptoms on being over weight.  

Sometimes I wonder if I am imagining these symptoms.  I am going to go nuts until I see my neuro on the 17th.  Then I wonder if he will be one of those docs that say " it's age related....or from migraines" .   The radiologist sure thinks otherwise.  I keep going back to my first appt when he said I had hyperactive reflexes.  

I actually am looking forward to going back to work tomorrow after the holiday.  I have had way too much time to think !


Happy new year everyone.

Sue

[gooddays]

Hi,  Once you have a little knowledge of what it is that you have, you sudddenly pay a little more attention to what your symptoms are.  It is not that you are becoming a hypochondriac or making them up.  It is that when you are health specialist you seem to care about everyone, but yourself.
The tingling sensation and heavy feet in this case, may have nothing to do with your weight, hopefully this may be your best scenario because all you would have to do is loose some weight.

Nobody wants to have MS, but we all want to know what is causing our symptoms.  MS is such a monster that I even say that if I ever had an enemy, I would not even want him/her to go through this ordeal.

Keep your faith, give your heavy load to the Lord and keep us up to date.  You can always find in us a shoulder to lean on.  HAPPY NEW YEAR!!!!!

Zulma

[sdear627]

Well I pestered my neuro doc enough that he finally called me back to discuss my MRI results.  (sometimes being a nurse is a bad thing lol ) . My follow up wasn't until the 17th, and I didnt want to wait that long.

He said he is not "ready" to diagnose me with MS.  He said that it is very dangerous to jump to a diagnosis , and start meds if it isn't MS>

So...remembering the post on how to handle your neuro...I asked him..please explain to me why the radiologist called this MS.   He said he went and viewed the films...and he believes most of the spots in the white matter are age/migraine related...that they run the "wrong direction" .  He said there was only one or two small areas that ran "perpindicular" like you see in MS.   He also said my symptoms are not "typical" of MS.   Now I am doubting symptoms myself.

Anyways..to make a long story short,  he said he wants to do an LP to either confirm or rule out.  I told him I thought it was possible to have a negative LP ?   I am not sure I want to put myself through an LP.  I again asked him to explain why my neck/shoulder , arm is numb and has spasms..since everything else has been ruled out.   He said it could be some sort of neuropathy.  

I asked why my arm is weak..why i can't even blow dry my hair....he didnt have a good answer.  He again repeated he wanted to do the LP to rule it out.  He also said he would like me to get a second opinion to put my mind at rest.   He said he truly believes it is not MS, as he kept repeating my symptoms aren't typical.  Then he kept saying to go for another opinion to "make myself feel better " .  

I am not sure what I am going to do.  He said he rather treat my symptoms, and continue to pursue if it is MS.   I am going to meet with my internist on Monday and get her opinion.   I am thinking before I do this LP,  I may just go see another neuro and have him look at my scans.  

I also told him if this wasn't MS,  I wanted my MRI report corrected.   He said that isn't possible since he and the radiologist don't agree on it.  

UGHHHHHHHHHHHHHHHHHHHH !!!!