Next Neurologist Appointment what do I do?

[socrates2k1]

My first appointment with my Neurologist was on August 17th.
At that time he ordered an EEG and MRI (brain).
August 27th I went for my follow-up.  He said he had “good news” and “bad news”.
The “good news” was the EEG revealed no seizures.
The “bad news” was that there is a walnut sized cyst in the center of my brain, and
there are  12-16 lesions  in my brain.
He took my wife aside, into a separate room to show her the MRI,
so  she could see what he was talking about.

He explained that the cyst, in the center of my brain, was not life threatening.
Then he explained the 12-16 lesions and how they affect the nervous system.
He explained they can be serious and life changing, because they point to MS.

[Note:  When my family doctor heard about the possibility of MS, he was not
surprised given all the symptoms I have been presenting , he said he would have
put MS on the top of the list (had I not had a closed head injury about the same
time as the symptoms presented.]

Ever since that appointment, I have been doing research (via the Internet) on MS.
One thing is clearly emphasized, education is the first step to dealing with this illness.
So, I’m trying to learn as much as I can about MS (as I’m sure everyone else is doing)

My Neurologist, then gave me a follow-up appointment with him, 2 months from then
(October 28th).  At that time, they may do another MRI (brain), if not they will give me
another appointment (two months from then).  I was told I was not able to go back to
work, until at least 2 months (October 28th).  So the next appointment, they may or
may not do an MRI, and I may or may not be given the OK to go back to work.
My wife did call and get my appointment moved up to October 19th.

The first appointment with my Neurologist, told me I may have MS, so I was obviously
not prepared to hear or deal with the (unofficial or unconfirmed) MS diagnosis.

This next appointment I want to be prepared.
I want to know what questions to ask.
I want to know what answers to question (ex. If no MRI now, why?)
I want to know what he needs to have to confirm or diagnose MS.
I want to know what treatments will benefit me, now.
Most importantly, can I go back to work or not,

Any ideas would be greatly appreciated.
Thank you for your time, consideration, cooperation, I truly appreciate it.

[socrates2k1]

I went to my Neurologist on Monday, October 19th, 2009
I told him all of my symptoms I was having, etc.
He shook his head each time and said, "yes" or "uh-huh".
Then he told me to come back in two months (Dec. 14th, 2009), and they will do another MRI, but also that I was not to return to work until at least then.

He (seemed to me) to not listen to anything I told him, and just did what he wanted to do.  He put me off for another 2 months.  On October 28th, 2009, when I don't show up for work, they will let me go altogether.  So, even if in 2 months, he says I can then go back to work, there will be no job to return to.  Not to mention the facts, that I will not have had income for 2 months, nor health insurance for two 2 months.

I saw my RN, who comes to my home, yesterday, (October 20th), and told her all the symptoms I was having including extremely low blood pressure, difficulty breathing and blue lips, and black outs (or fainting) and she called my primary doctor (who she reports to) and got me an appointment with him, today.

I went and seen my primary doctor today, and he gave me a prescription for salt (NaCl) pills, and told me to come back in 2 weeks, and they will do a breathing test then.

I'm in lots of trouble, and MS is just one piece.

Thank you all for your thoughts and prayers, take care and God bless you and yours.

[Fluffysmom]

Hello there.  I have an appointment with my new neurologist on Monday the 19th.  Although he will be my 4th neurologist, I read your post with interest.  Lulu gave us both some great input.  I've already had many tests to rule out other possibilities.

I have been on Social Security Disability for several years, due to other health issues. My neurological issues started in Feb. '08, and I'm still undiagnosed.

It did take me two years to get approved for SSD, but I didn't have so much clear medical evidence that you apparently do.  I would suggest that you go ahead and apply for SSD; if you improve and are able to return to work, no harm done.  It's always good to get the process started, as it does take time to go through the system..  Ask your doctors for help and advice.  I'd like to believe there is a way to expedite matters for those who have clear medical evidence of inability to work.

Get copies of all your test results, physician's chart notes, etc.  It's a good idea to keep your own file of your records.

COBRA is a good thing, if you're able to afford it.  The new administration changed the rules, to help out in these tough economic times.  The employer must pay 65% of the premium, and the ex-employee only pays 35%. Since insurance premiums can be quite high, you'll have to check and see if this is an option.

Check with your State, see what options it has, depending on your income; you may be eligible for another medical program.  The Department of Health and  Human Services should be able to direct you to information to help you.

I've survived well on my SSD and Medicare; I have BCBS MedAdvantage, which I pay extra for, but covers more than straight Medicare.  The state helps pay for my prescription premiums, since my income is low enough.

I'm wishing you the best on Monday.  I'm looking forward to reading about how your visit went.  I'll most likely post about mine, too.  :o)

Kathy

[socrates2k1]

Thank you for your advice, that sure makes sense to me.
I will deal with Monday's challenges, on Monday.

Thank you again, take care and God bless.

[Karen99]

Also, let your neurologist know you may be losing your medical insurance so he can expedite other MRI's or other testing.  

[Karen99]

I've got some ideas.  If you could persuade your employer to extend your back-to-work date another couple of days, they would pay your insurance premium for that month. (Nov)

Have you heard of COBRA?  This is a law that enables a employee to keep their insurance, but you have to pay the premiums yourself.  Try to keep your insurance for at least another month or two.  During this time, go see more doctors and get as much medical documentation as possible.  It will serve you well later.  You should see an orthopedist for your neck and back.  Be sure to have a primary care physician that knows you and will continue to treat for pain or others meds you might need. Once you are an established patient they don't charge a lot.    

Does your state have temporary disability?  File for it the day after you see your neuro. If not file for unemployment.  You may be looking at long term disability.  That's a whole other story.  You can get MediCare after two years, from the date you file for permanent disability (who the heck made up this rule?)

Does your city have any free or low-cost medical clinics? Do you have a WalMart or other pharmacy that offer many inexpensive medications?  

Let's wait and see what your neuro has to say.  Then take it from there.  

Good luck.  You and your family will make it - it may take a bit of maneuvering.  

[socrates2k1]

Hey, thank you for being honest, I appreciate it.

I'm sure we are not the only two that have had this situation and we won't be
the last either.

I just have to put it in God's hands, and trust that He will take care of all
my needs (not necessarily any wants).

Realistically though, I work for our Municipal Court, and if I mess up something, someone could get arrested and go to jail, and I don't want that on my conscience.

I want to thank everyone in this forum for all your help, and I see we will be keeping up with each other in our future.

It's all still new to me, and hey with my lack of short term memory, I may forget I even have this, right? (ha-ha, just a small joke).

[jensequitur]

Yup, you're not alone there.  I have health insurance, but I'm not able to afford the medication I need - what a catch-22!

[socrates2k1]

My next appointment with my Neurologist, is Monday, October 19th, 2009
During this visit many things are important.
Since my fall, back on July 3rd (severe closed head trauma, severe neck trauma, severe concussion), then 1st appointment with Neurologist back on August 27th, 2009, up until my appointment on Monday, I have practically all the "symptoms" for MS  I was on vacation, from my job, when I was injured, so I have yet to return to work.

My workplace has set a deadline for me to be back to work (with Dr. approval) by
Wednesday, October 28th, 2009, or they will let me go.

Not only does this mean loss of income, but also loss of health insurance, too.

Due to many symptoms, that continue (example "black out and falls", very poor short term memory, inability to follow multi-step processes, poor "word finding", poor cognitive thinking processes, just to name a few) to be a daily (even hourly) hardship, I may not be able to return to work, at this time, if ever.

My speech therapist, who has been working with me on my speech (including stuttering and word finding, cognitive thinking, etc.) and thought processes said, in her opinion (since she has been working we me these past few month, and has seen little improvement and some deterioration) she does not believe I should go back to work.  Though her opinion does not hold any weight as to whether or not I get to go back to work.  

That decision, is completely up to my Neurologist, which he shall have to make
(at least a short term) decision on Monday.  That decision will affect me both financially and medically.

I recognize my weaknesses, symptoms and all, and have come to the realization that I should not go back to work, for at least the foreseeable future.

I'm scared to death, of many prospects of this disease and the ramifications I will have to learn to deal with.

Financially, I know my wife and I cannot "make it" without my income.
Medically, I know I will not be able to go to the doctor or get any medicine if I don't have insurance (per a job)

Are any of you facing this dilemma or situation (or have you faced it in the past)?

Thank you for your time, consideration, and cooperation, I deeply appreciate it.

[Lulu54]

Hi Socrates,
How smart of you to prepare for this next appt.   Most of us find that each neuro has their own style and the doctor will lead this next appt.  Listen attentively to what is said and shape your questions from that conversation.

If this is dx'd as MS, you will have lots of future appts. to form your own questions.  Now is the time for the doctor to keep searching for his answers.

I'm going to assume that your wife will go with you again - it is so important to take a second set of ears along.  It is hard to concentrate on everything being said and form your responses and questions.

Some of our members ask for permission to tape the discussion so they can replay it later.  An excellent neuro will give you lots of written information, including notes from the appt., when you leave the office.


In your list, you have already come up with important questions:

... If no MRI now, why?
...what he needs to have to confirm or diagnose MS.
... what treatments will benefit me, now.
... can I go back to work or not?


The important thing to remember is the final diagnosis of MS is really a dx of elimination.  There are a lot of mimics that must be eliminated as possibilities before a neuro will call it MS for sure.  A good neuro will not jump in and call it MS if there is still a chance it could be something else.

You are a quick student to realize that knowledge is power with MS.  The more you know the better you are prepared to advocate for yourself and be an active partner in the whole process.

MS is a mysterious disease, it does not affect any two people the same way.  And it is not necessarily a grim sentence of life in a wheelchair or worse.  A large percentage of people with MS continue to lead normal, productive lives and do so on their own two legs for a long, long time.  If you turn out to have MS, I hope you fall into that category.

Your doctor is not going to be able to tell you how this journey will finish - that is the very frustrating part of this disease - not knowing can be extremely difficult.  

I hope you will come around here often, and invite your wife too if she is interested.  We have lots of experience to share and very compassionate community members willing to give their time and talents to everyone else.

we'll look for you around.

be well,
Lulu

[Wobbly]

Hi there, just wondering if you have checked out our "Health Pages" it's on the link of the top right side of the page... there is alot of information there...it should give you some ideas of what is next.

take care and let us know how it goes

wobbly
dx