My MS Specialist Appointment

Ok good folks, I'll keep this short and sweet.

I want to know what questions I should ask this MS Specialist that is pertinent to my situation.

Please help.  Thanks so much in advance!

[figuerpa]

Hi Lisa,

I would write a list of questions, allow him to do his exam first then what he doesn't answer off of your list you can ask him. If he is an MS specialist then he should be plenty thourough with you and your exam.

Take a timeline, all or any of the test results you have had done in the past. MRI's, LP, Evoked potential tests, EMG or what tests you have had done. This will give him something to look at and know where to go with the next steps.

Ask him whatever comes to you. That is what he/she is there for and he/she should answer your questions. Avoid using big words, they kinda frown on that becasue they are the ones who are suppose to know those words not the patient and sometimes using big terms will make them think that you are just looking for an MS diagnosis. Not saying all doctors are like this but some will.

I hope your exam goes the way you want it too and you get answers.

Take Care,
Paula

[rendean]

Hi Lisa,
Paula took care of most of the details , just a couple of other things I would ask.

If he doesn't think it's MS or something else then ask what he is thinking.

If you will have follow-up visits ask when you should call and let him know of new symptoms and the best way to get a message to him.


How often does he do MRI's and does he read them himself or does the radiologist do so.

Ren

[LisaJF]

Thanks Paula and Ren

I have all my diagnostic tests and laboratory reports since 2007.  It's all nicely placed in a folder.

Good idea on what else he is thinking if not MS (which I hope not), or perhaps to refer me to a rheumatologist.

That's true on the new symptoms and getting a hold of him. Like two days ago with the diplopia that lasted 24 hours.  My primary said I didnt have to go into see her and just wait until my office visit with the MS Specialist. Good question on the MRI reading too.

My concern is the anticardiolipin IgM being medium positive (anticoagulant or daily aspirin -- hello?), the antidsDNA being equivocal (SLE flare marker) and my CSF IgG synthesis rate is elevated (if that means anything even if its a weak positive).

Oh yes let me not forget my kidneys.

I started to write things down with a blank pad and I drew a blank that is what prompted my question. Im a bit spacey today.

thank you guys!!

[drsdonthelp]

I honestly always have a list of questions!! If I don't write it down, I will forget to ask, or I will say, I have another question but I can't remember it, so that's when I refer to my list.

I am the one with the ton of questions and they all know it, but when they give me a  
c o c k a m a m  y  answer, I will ask ANOTHER question. I don't even care, because, they will tell me its stress anyway so I always have a come back..

( Maybe its the italian in me) but we have to have the last word, LOL especially if someone is trying to make me feel d u m b !!!

GOOD LUCK AND ASK AWAY!!!!! You are a smart and caring person and deserve the truth about your body,

Love and Hugs,
Pam

[kelly97]

Hi, I forgot what time your appt is today.
You should ask the MS neuro - If it's not MS, then what do they think it is?  You have all these MS-like symptoms that come and go, you have all these lesions. There has to be something that they can put a name to this. (That doesn't sound right, but you know what I mean).  I think you'll come back today probably with a diagnosis of MS. I know you don't want to have it, but I also know that you very desperately need to figure all of this out soon.
Good luck, love and hugs,
Kelly  

[LisaJF]

Everyone:

Thank you thank you thank you for your help on this post and in emails, especially the support.  I appreciate it very, very, very much!!!!  It's funny when it comes to yourself, you tend to run out of advice?  Hard for me to step out of the box so to speak.

I'm leaning toward the Lupus more than the MS.  If not Lupus, I have no idea what I got.  Maybe its a "Lisa Sclerosis" Heh.

I'll let you all know how it goes today.

[DazedandConfusedGuy]

All the best Lisa. Keep your head up!


-Greg

[twopack]

Good luck Lisa.  Stay focused and calm.  Deep breaths.  Leaving with a hung head and frustration doesn't get us where we need to go.

Was your IgG anticardiolipin elevated too or just the IgM anticardiolipin?

Thinkin' of ya.
Mary

[LisaJF]

Just the IgM anticardiolipin was.  The IgG was normal.

Thanks Mary and Greg!

I'm actually calm.  I'm glad I'm going forward and hopefully onto the next step whatever that may be.

[LisaJF]

Wow, that was a 2.5 hour visit.  

Well, conclusion at this time, "Probable MS" (that doesnt mean it is)

I need to go see a urologist because he had me empty my bladder than have his nurse do an ultrasound and I had 260 cc's of urine retention and feels that the Urologist can determine if it is structural or neurogenic.

Same with my right eye as he calls it "monocular diplopia" and wants me to see another neuroopth to ensure it is not the lens or glaucoma.

If both of them come out "neuro" then he said that he would start me on Capoxone and feels it is MS.

I didnt know I had ankle clonus.  That's new for me.

Anyways, its not a definite and Im happy about that.  Let's just pray that the bladder and right eye thing is not neuro.

Thank you all again for your time, support and most of all caring.

Lisa

[LisaJF]

Oh yeah

My Neuro kept the MRI CD's from 2007/2008 and 2010 and is going to go over to the hospital to review with the neuroradiologist  He was looking at it with me and told me he could see more lesions from 2010 to this April 2011.

I like him -- so far.  That was a long @$$ visit though.  

[sarahw244]

Glad to hear that your specialist appointment was thorough.  It sounds like it went well; possibly some answers for you?  

Good luck at your other appointments!

Sarah

[LisaJF]

I keep forgetting something and when I remember, I sign in and get to this part then I forget what I was going to type. Sheesh.

Oh yeah, heh he gave me provigil.  Just looks like a lot of mg's to me in a day.  100mg 2xday where I would be happy to start out with like 50 mg once a day or even 25 mg just to ensure I wont have an allergic reaction LOL

[LisaJF]

oh and thank you sarah!

Im a bit confused right now so I'm going to stop posting. My brain is all over the place.

[rendean]

Lisa,

Sounds like you've got a good neuro there. He is covering all the bases. I'm sure he's sending you to a neuro-opth for the eye issue and a uro-gynecologist to do uro-dynamics to determine the cause of the urine retention.

I like the fact that he is getting a second opinion from a neuroradiologist. His ego is still small enough to fit through the door. I think you found a keeper of a neuro.

Let us know the other tidbits as you recall them. :-)

Ren

[LisaJF]

Seems like his ego was perfect and you know what was funny is that he said, "I remember you."  

Now here's the story, he worked in the same hospital I did and I was a float RN (went all over ER, med-surg, ICU, telemetry, etc) and one day without knowing that he was a MS Specialist, but just a "Neuro" I did a curbside question pulling him aside asking, "What causes your feet to vibrate on the floor and muscle cramping in toes in one foot"?  He remembers that and that was like a year ago.  Hahaha!  

He proceeded to tell my boyfriend that I am a very smart RN.  That made me beam inside.  (because lately or in the past 10 months, I don't feel very smart). He also told me if I wanted a job and if his office and if there were any openings he'd want me.. Now isn't that nice?  He also mentioned that I could do quality assurance, suggesting other paths to make myself useful because I told him how much I miss doing my clinical in the hospital setting but felt uncomfortable with my tremors, fatigue and sometimes difficulty writing progress notes (which I used to be great at).  

I'm glad he's going to sit with the Neuroradiologist and go over my MRI with him.  It tells me he cares and will take the time to figure out what is wrong with me.

He also was a frustrated as he went through all of my MRI CDs, that the MRI's were not done in a specific way he would have ordered it.  He found a lesion in my corpus callosum. So I'm glad he's going to go through this side by side with all the different CD's.

I forgot to ask questions that I wanted to though, because I was deterred with the bladder ultrasound.  During that time I was getting examined, he saw another patient that was waiting and I had to only wait 5 minutes after they were done.  I didn't feel rushed, in fact I think I rushed it at the end knowing he did a lengthy visit that was over the obvious time limit.  He never said that to me, but I had it in the back of my mind.

Anyways, time will tell won't it?

The only thing I was confused about is the diplopia that I had three days ago for 24 hours.  I told him it was out of both eyes but I think my left was blurry but my right was double vision, not both double vision.  A binocular not minocular diplopia.  I guess that's where the neuro-opth will come in and figure it out.

Thanks again Ren!

[Lulu54]

Lisa, this sounds really good.  I had read your update last night but my brain was mush and I wasn't sure what to respond to.

The idea about checking the nature of your retention is perfect. I have the same problem and mine is definitely neurological.  

I love any doctor who says "that is not my area and I want you to see another specialist who will know."  Those docs without the egos that they know everything are the types everyone should have.

Do you have these next appointments scheduled yet?


It is sure nice to here someone affirm your worth, isn't it?  That was a great compliment and you be sure to keep your ears open for a vacancy in his practice.  

best,
Lu

[kelly97]

I HEART your neurologist. :-)   If only we could all find one as amazing as he is.

I also wanted to say that I'm glad that your boyfriend went in with you to your appointment. It's important to have people around us that support us. And I'm sure that it made you feel better that he went in with you. That shows that he cares.

With all your symptoms and your lesions, I'm still not sure why he's waiting for these other tests before he starts the Copaxone. Heck, people with just CIS are urged to start it if they have MS-like lesions. And you've had more than a CIS.  I think you'd fit into the category of Definitive MS, but Probably MS is a very good starting point.

I think it's great that he recognizes your intelligence (as I'm sure anyone who has read your posts will agree). It's nice that he complimented you by saying that he wouldn't mind hiring you.  :-)

Sorry I missed your phone call last night. I got home late from work - working on a critical project. And you must have called while we were walking the pup.

love and hugs,
Kelly

  

[LisaJF]

Kelly and LuLu

Thanks! I think I'll keep him -- :)

Yes, I just made the appointments today:

Neuro Opth May 11 @ 1PM
(they state its going to be a 3 hour visit and I need someone to drive me -- any ideas why?)

Urologist  May 10 @ 1:45 PM


Let's just pray the bladder issue is structural and can be corrected by surgery or something. :D

And the eyes too!  

Kelly,

I think I would need for the medical professionals to see one more CIS event on top of the one I had in April.  (If that happens ---)  

I had no 0 bands too remember?  I know its not definitive and 10% dont have them but still, I'd prefer he go down this path instead of diagnosing me right now -- I'm not ready for it either.  

It's peculiar how one minute you're gun ho about wanting a diagnosis, the next minute when you're there, you're afraid of it.

I can't be the only one who goes through that.

Lisa

[kelly97]

Oh, I thought you already had your first CIS back in 2007 or sometime around there, and that's why they had previous MRIs to review.  And then I thought you had another one around 6 or so months ago.  
I had no O bands, too, when they did my LP. And I have a definitive DX of MS and so does COBOB. (I realize that you already know that it's not required).

I am glad that your neuro is being thorough. He's already bringing up DMDs, which is a good sign in my book.  

I can understand your fear in getting a diagnosis of MS. Who wants to have MS? - I don't, that's for sure.  You have a lot to consider and deal with right now, and you're doing a good job of handling it all.  I also realize the importance of getting the correct diagnosis. It sounds like you're really heading in the right direction. And you're getting in really quickly with your appointments.

You'll have to let us know how it all goes.
love and hugs, Kelly
  

[sllowe]

Lisa Gurl!

What progress in one day! I'm so happy for you! What a good guy, huh? And, he made you an offer to work @ his shop? Even better - you should feel your worth even if you can't act on it now :) That day may very well come for you! We knew you were smart, and value you - and he does too in just one visit.

Your on your way. Hope you move through the next appts w/the Uro and get that bladder square.
(((((BIG hugs))))))
-shell

[LisaJF]

Shell chica!!!

I know what wonderful progress huh?  The only thing I ask now if they dont have me repeat the stupid rhomberg test or any other balance test that goes along with it.  I fail miserably.  I have ataxia -- so therefore, I'm not going to be able to walk the tandem walk or on my tippy toes or on my heels.  All I do know, that when I first had my examination by my Neuro in 2007, I definitely got worse over the 4 years - this year appears to be the significant progression.

You know even if he was just saying it, it felt good to hear it!!!!!!!!!!!  

I'm leaning toward more of a patient advocate/ patient relations type thing.  I know hospital settings have such and I know I'm obsessed with it. Hahaha.  

Yep I'm on my merry way with a bladder that doesn't know how to empty itself.  No wonder when I squat to photograph I **** myself. Jeez!  That sounds professional huh? Heh.  I come from the Bladder tribe -- my name is PeeMyself.

lmfao!

xxoo
Lisa

[LisaJF]

I was quite giddy yesterday, feeling accomplished by getting my two appointments landed, finally en route to finding out what is wrong with me.

But then I was hearing jabs from my boyfriend, little responses that just turned my head to reply, "What?!?"

As you all know or some of you know, I've been out of work since August 2010 due to my major issue "fatigue". Along the way I've been having issues with pain, tremors, visual issues, myoclonus, dead left leg (which has gotten better), balance, etc.  I just got medicaid in April so I could finally get the health care I need and finally got to see the MS Specialist a month later. Now I am scheduled to have the neuro-ophthalmologist and urologist examine me for any structural issues versus neurological.

Well, I went to go pick up my provigil and the pharmacy told me they had to fax over a form for my Neuro to fill out then that has to be approved by my "insurance". They said it will take approximately 3 days.  I went to call my boyfriend to let him know and stated, "I'm so fatigued today".  His response, "So am I."  I said, "Are you making fun of me? Are you trying to compare my fatigue with yours?"  "No" he said.  But I knew differently.  That was the first jab (actually earlier he went out to show a house to a buyer and when he came back I was sleeping and woke me up stating, "Obviously you didnt get the provigil.") It was 20 minutes later I went to get it.

Then later on he came to my computer room and said, "Do you have any idea what financial crisis we are in?" Of course I replied, "Yes, I do".  He then proceeded to say, "No I do not think you do, we have no money, I ran out and we will be kicked to the curb without a place to live".  I said, "I don't know what you want me to do?"  "If I go and get a job, I lose my insurance and have to wait at least 2 months probation until the new insurance would kick in, meaning I could not receive the care I'm getting now or need to get.  If I take on a new job and something happens if I have to go into the hospital, or call in sick because I was too fatigued or something else happens, I will then lose my job eventually for excessive absences and I'd be back with no job and no insurance.".  

His response, "You don't want to work.  You're NOT THAT SICK".

I was so angry. Im not a lazy person.  I'm a hard worker.  My work ethic has always been excessive.

I don't know what to do.  It's not like I can do clinical nursing at this time.  Who would take me with the myoclonus and tremors?  What patient would feel comfortable with this going on?  I'm sure I can do other things that do not require patient contact, but for now I want to get these appointments done and over with.  At least to know what is up and whether or not Im going to have to start on DMD's or go to a rheumatologist.

Ughs.

Lisa

[Lulu54]

We all care, Lisa. What a horrible exchange from your boyfriend.  There must be a whole lot of back story to this for him to just erupt like this.  

Don't be bullied into doing what you know is wrong - you need to do the followup appts on this search and you already know you are unable to work in your current condition.  His comments fall into the "buy you look so good" category.  People outside of these bodies just don't/can't get it.

People say horrible things at times of fear, anger, financial distress and I hope this is just a sudden dumping of all his negative emotions and the light of today will give him a new perspective.

When you both have a chance to process what was said, can you sit down and talk through all of the problems?  


I am so sorry you day ended like this - even when you get the provigil approved, it will not make the difference for you to get back to work.

Here's hoping you two can work through this,
hugs,
Lulu

[kelly97]

I'm sorry that you have to deal with all of this.  All of your medical stuff, plus jabs and added stress from your boyfriend. Doesn't he realize by him saying these things, it's not going to make it any better for either of you.  You've gone this long without working, and he's going to say that now to you. Now that you finally have insurance and coverage?  And you're finally starting to get answers to all of your health problems that you've been having since August. He's very insensitive.  He couldn't even give you time to digest all of this information that you've received.  I know how you loved your job, and you wouldn't have left unless you felt that you absolutely had to.  

Unfortunately, financial stress can lead people down these paths. I can understand that he has a lot of fear right now. Fear that you could have a diagnosis of MS and fear that you may not have a place to live. Those are both valid fears. He may not be able to handle it all right now. But he may eventually get there with time.

Is there anywhere that you can go to get additional financial help? I just don't want to see you homeless. I know that you could probably move in with your mom. However, I'd rather see you somehow find a way to stay where you are.  Moving is just one more added stress that you don't need right now.

love and hugs,
Kelly    

[sllowe]

This sitch rots, Lis.

Can you make small payments to each bill owed in order to not lose your shirt?
Don't try to explain to him - he'll not get it. There is a BIG difference between true fatigue and "tired." Unless fatigue is experienced, most don't understand the difference, or that there is one even.

Because your strong (I know, your body is failing you - but I mean on the inside) my suggestion is to sit down with all the bills and make calls to find out the bare minimum payment you can make while you are in this situation. Get your provigil in you 1st. Just take one step at a time, and avoid confrontation w/him.

You don't need it, and it will frustrate you and you'll get too overwhelmed. Pay only a little bit to those bills that won't charge you extra fees, i.e., the phone bill, electric, cable, etc. Just so long you are paying a little they will not shut you down.

When he brings something up that you know, just look at him and say, "I know."

Hit me up, PM. I'm had nothing when younger, and 3 kids, and def. not enough to pay all bills on time - I juggled it and it worked.
xoxox
shell

[LisaJF]

Thanks for the words of encouragement.  I'm still taken back by what he said yesterday.  If anything I have a better work ethic than he does (when I'm working).  Although this is not a competition -- it sure seems like this grade school argument that I'm doing more than you are type deal.  It's sickening.

He seems to feel that the MS Specialist obviously doesn't think I have MS or else he would put me on a DMD.  He also stated yesterday that if it was so important that you're retaining urine to unknown reasons, that wouldn't he have made the call to the Urologist and Neuro-ophthalmologist to hurry your appointments along? Then he proceeded to say, and look he wants to see you in 4 weeks not two weeks or one week and he takes that as a non urgency issue meaning that its just me and "stress".

Honestly, I can say that Im not stressed about our financial situation at this time only because I know if I had to, I can go live upstate with my Mom and I have a place to live if I need it. I may become stressed when I run out of unemployment -- true.  But right now that money pays for the gas, copay at doctors, food for me, pet food (cat and bird) and other miscellaneous things.  It wont last forever I know.  But I was hoping to get on board with a diagnosis by now, taking the appropriate measures in either slowing the progression of whatever it is or treating whatever I have to enable me to join the human race and be productive once again.

I'm frustrated alright.  It's 10:10 am and he is still sleeping.  Being in real estate is quite the perk.  Honestly if he spent more time doing that than banging on his drums, going to practices twice a week, going out to "jams" twice a week, spending time on facebook, using his life insurance money to pay for the bills, he'd be doing better as to getting leads and sales.

I'm sorry I'm inappropriately venting here.  

He wants me to take care of him (work and give him 2000.00/month) no matter how I feel.  If it's not from me, its from his parents or his life insurance policy (which I think he finally depleted).

He states he's doing the best he can -- but he's not and is being unrealistic.  I told him to get a full time job and he's like "doing what?"  What job can I do to pay the 4,000/month bills?  I said some money is better than no money and he was going on about how he plays in bands and makes a 100.00/gig but think about it, if the gig is 1 hour away (gas is 5/gallon), you drink (6.50/beer), eat(god knows what) then what money are you really making?

I don't know what to do in regard to just saying, screw it -- go back to work, go as long as you can until something happens where you can't go any farther.  Push yourself as many of you do even with MS (and I don't even know if I have it).

Thanks again

[MissLauraI]

Wow Lisa- your guy sounds like my ex. Very similar stories with different details. He was a musician and into sales, slept til 11am, partied all night, blew all our savings...pushed me into a job after being in a wheelchair for a month...something that was not in my best interest at the time but we had 3 little kids at the time so I had few options. Only telling you this to let you know I can relate.

Did I mention he is my ex?

Don't let anyone bully you. His level of commitment to your health seems rather weak at a time when he should be your greatest advocate.

No one deserves to be treated badly. Would he move in with your mom too if it came to that?

I am sending you a big hug and prayers for your heart to be strong. Keep fighting for YOU!

[drsdonthelp]

Lisa,

Ok, I totally get what you are feeling right now.. I worked for 16 yrs, at a place for the physically and mentally challenged. LOVED MY JOB!!!
When my sickness was all out of control when I was pregnant with my son who is now 7, my husband did not GET IT!!  When my eye disease started to get out of control, and I cried myself to sleep everynight, instead of giving him "attention", he still DIDN'T GET IT!
He "worked " day and night, while I struggled to navigate through the house and deal with a 4 yr. old at the time as well as a 1  yr. old. I fell down the stairs while holding my daughter because my husband didn't hear her crying in her crib, and I was on the couch with ice packs and bruises..... I heard her cry and he "tuned her out", I eventually went to get her.  
After I had my first surgery on my eyes and could not see, HE STILL LEFT TO "GO TO WORK" because "someone" had to pay the bills. (It was his escape)
I heard over and over,, why don't you get a job??!!!! I was like WHAT???!! I have a job, I just can't work right now, you mental A$$!!
We went through ALOT  of ups and downs during this whole process, but I think, NOW, he GETS IT!!!
My husband says things out of anger, but APOLOGIZES AFTER over and over again because he knows I have been dealt with alot!! He also knows that I am not lazy, I just can't do everything I used to do or as well as I used to.
HE TRIES TO GIVE ME ATTITUDE EVERYNOW AND THEN, but he knows I will not allow him to demean me , and I Give it right back!!!

You guys will get through this,!!! My husband tells me that he has to worry constantly about my health, the kids and the financial burden. Sometimes getting it all off your chest and your boyfriend saying what he said is his way of telling you "How scared he really is".

Some men are funny like that, My husband is not one to cry, he would yell and be miserable to everyone around him instead of admitting  he's scared.

Good luck sweetie, You are definately dealing with alot right now, but this too shall pass and if your relationship is strong enough, this will bring you two closer together.

Love to you,
Pam

[twopack]

I'm so glad to hear your MSologist appointment went well Lisa.  I hope accurate answers can start bringing a clear focus and solutions to years of crystal ball gazing (or was that a Magic-8 ball?).

Around here we understand your elation.  Other people?  Not always so much.  Sometimes they see it as C-R-A-Z-Y 'cause nobody could be that happy to be told they're sick.  They simply can't understand that we already knew we were sick.  It's the professional validation that's important enough to incite euphoria.  I'm thinking it wasn't coincidink that the man reacted on that particular day.

It seems you both have things to think about and then talk about.  Be mad for a minute but please try not to get defensive yourself or drive him to that place.  It is hurtful there and seldom productive.  I'm not surprised PwMS (and other similar stuff) and their relationship partners have very different initial reactions to consultation visits.  Who knows where things go from here?  Just don't hand important decisions over to circumstances of the day.

Yes, it's hard to be sick.  It's hard to be the one left behind - or held back.  There have been changes for both of you.  That's life, always.  Natural ain't necessarily easy.  Neither of you can know what it is like to live the other's life right now.  I don't know him.  I don't really know you.  I don't want to take sides or beat up on anybody.  I am pretty certain this is NOT an opportune moment to make major relationship or lifestyle decisions based on adrenaline responses.  Capisci?

Lisa, you have worked hard to create a system that is supporting you in your healthcare crisis.  Think very hard before you dismantle it on a whim (and risk triggering a demand for reimbursement of funds already paid).  Just let it work.

Now R-E-L-A-X (breathe) r-e-l-a-x (ahhhhhh)
Mary

[supermum_ms]

I'm so so sorry Lisa,

Ok I think i'm going to say what you already know but probably dont want to hear, its coming to you from a caring motive. I think you've probably already worked out that you are the most mature, responsible and selfless person in your relationship. If you havent worked that out yet, you just need to look at your career and compair it to his none existent one, what he does is all about him self whilst what you do is all about others!

The situation you are now in, has an expectation of him stepping up but is he now or ever really capable of putting someone elses needs above his wants? you know the answer to that probably more than anyone else. If his personality is narcassistic or to a lesser degree just immature and self orrientated, his focus will not be on you but on how this whole situation is effecting him and what he wants to do. I expect if the situation was reversed your entire focus would be on him and his needs, you'd be shouldering everything, working harder if needed, doing what ever it took but thats you, what can you realistically expect from him?

It doesn't matter how much you love each other, you have to totally understand your partner and not expect more or less than they are able, thats a two way street and he's not doing right by you or your relationship. Dont hold your tongue it serves no purpose but does generate hurt feelings and isolation so the next time he says something like what he has already please tell him to pull his head out of his a$$!

HUGS..............JJ

[rendean]

Dear Lisa,

I am so sorry to hear of your aftermath with the MS diagnosis. I went through a similar but very short-lived situation as well. Anger is the only emotion some men know how to express because society has formed this idea that being angry is okay but being soft and caring is not.

If you'd like to PM me, when you're up to it,  I have some work options for you to explore.

Sending big comforting hugs,
Ren

[RazCarver]

Lisa, your neurologist sounds great. It sounds like you are on the way of finding some answers. He seems to respect you as a person and is listening.

We all filter what we hear through our own baggage, fears, and past experiences.  
twice I’ve had a partner that was ill and unable to work. I know the fear, frustration and feeling overwhelmed. feeling it was unfair and anger at the situation. I'm ashamed to say at times they heard my anger and I felt misunderstood. They didn’t understand, but they couldn’t because I didn’t share it. I couldn’t because I didn't understand myself.  I tried to understand what they were going through. Yet, I truly couldn’t understand it all. Today as I struggle with symptoms, I say right out loud, I’m sorry I just didn’t understand.

I’m in limbo land too. Yes I still work full-time, but I’m not an RN. If I plan my day right I can sit often and if I mess up, the most that happens is I mess up a computer more then it was, or the whole network goes down, but I’ll get it back working.  no harm will be done to anyone. That’s nothing like being in the medical field.

I have friends that don’t understand why I can’t do things with them. One that thinks I should get a 2nd job because I’m less then one paycheck away from living in my truck.
I barely hanging onto the job I have. that doubt creeps in…am I really doing all I can? I get mad because they don’t understand. Again I don’t share much and when I have they just don’t get it. They have nothing to base it on and can’t understand.

Just knowing where comments like these are coming from defuses the power and hurt of them. Then maybe I can stop long enough to be honest with myself and not let the fears and doubts in

by sharing all that, I guess what I’m saying, and doing a poor job at it, is:
Please don’t let those doubts creep in. don’t beat yourself up.  Don’t let your boyfriend’s fears mess with your head; It’s hard on both sides, but we each have to overcome our own fears as we try to be tolerant of others dealing with theirs.

by the way, I've been told venting = sharing and sharing has power.

[twopack]

Been thinking of what I said earlier.  I'm not taking anything back but wanted to make sure you knew I didn't mean you shouldn't vent to us.  There's not a thing wrong with feeling the way you do or saying it here.  I just didn't want you burning any bridges in haste.

Hope you're being good to yourself.
Mary

[LisaJF]

I can't express the gratitude of all your emotional support during this time.

Mary, you're right in a way. Yesterday he appeared as if our argument hadn't even happen and was all "nice nice" again.  I think it is true that when you're going through the neurological mishaps that keep you from monetarily contributing to the household (which I did when I was working) and taking that away since August 2010, I think it is hard to digest.  

Everything in our life is altered and it's not all about money, but our intimate relationship too, and unfortunately, my fatigue interferes with going out with him like I use to.  

Yes, he's a man who was born with a silver spoon in his mouth and his parents are well to do (millionaires), but I can't blame him for his family's fortune and he can ask for anything and get it.  Although, sometimes I do not think it does him any favors in the responsibility for oneself world.  

Wouldn't I love to dip into savings (which I don't have) or a life insurance policy or even to turn to my mother and say, "Hey I need 5,000.00" and get it.  I don't have that luxury.  Everything in my life I had to work for and work hard since the age of 16.  

He's a good, kind-hearted man but spoiled in ways that I am not used to.  But, when you think about it, most people have to work and do whatever they can to make ends meet.  My own father was a physical education teacher, science teacher, coach of lacrosse, football, track (indoor/outdoor) at a prep school, in addition to that, he worked for my grandfather's hardware store, did the Marine's thing on weekends (used to be an officer - a Major), and other things so his children had what they needed and wanted.  So I'm used to that role model or grew up with it, realizing that it is the "man" that got the job done.  A woman contributed to have extra money in their pockets by taking a part-time job.

This shows my age, I know.  We are in a modern world where women are successful and professionals that sometimes make more than a man does.  

I just know that if my mother had taken ill, my father would be there without complaint, without pressing the issues of how to make ends meet, ensuring she did not have to worry about anything.  I suppose I expect that type of consideration where it is unfair to do so.  Everyone is different. It was my idea of what "love" is all about.  I'd do the same for my boyfriend if the tables were turned.  (Actually, I have done so when he had his MI in 2005).

You're right not to take a drastic step after an emotional debate where fears and underlying "unknowns" for the future instigated the flare of argument.  

Ren,  I am not diagnosed with MS yet.  We'll have to wait and see what the neuro-ophthalmologist has to say as well as the urologist.  What if it is all structural?  (Which I wont mind because they can fix it!)  I don't know where my Neuro will go after these referrals.  I didn't ask him.  However, I am certain he will give it time for things to unveil themselves now that I do have the proper insurance to receive the care I need and they can witness my "complaints" or "symptoms" with their own eyes.  Before, I only could type here or call my primary to tell her what was going on but couldn't be seen or go to the ER due to no insurance.  

I think my journey is going to be a little bit longer as the Neuro pieces things together and continues to be open-minded about other possibilities (I would hope).  

I did ask him at the end what else does he think it could possibly be other than MS and he said, "Stress".  Well -- I was taken back because this is when my boyfriend jumped on the bandwagon and said, "Oh yes, she is stressed alright".  But he was actually projecting.  I said, "Well, I suppose there is some "anxiety" in regard to what is going on with me and the fact that I want my life back to join the human race to work and all, but --" The Neuro interjected as my boyfriend and I were battling our wits back and forth and said, "You asked me what else could it be other than MS".  I would love to think it is "stress".  **** I can fix that -- go to a psychologist and go on some antidepressant.  I am not sure his example of "stress" was his way of saying that is not as probable as what he was thinking in the terms of MS.  I don't know.  I put a call to him yesterday (he wasn't in) and they said he'd call me on Monday.  I'll ask him some questions I forgot to ask him at the end.  I was getting antsy after 2.5 hours of being there and rushed it at the end.

Again,

Thank you everyone for your input and kind words of support.  I couldn't be going through what I'm going through without your wisdom and experiences.  Please know that.  I do not take for granted your time, energy and thoughts beautifully expressed with compassion to me.

Lisa