Just do not know

[MCBCON]

I am at a loss for what to  do next.  Saw my neurologist today.  He told me that all the jerking my arms my arms are doing are either a reaction to medication or simply stress.  He also told me that my apparent inability to concentrate or remember things is likely do to stress only. Basically, all my latest symptoms are not MS related.  He is telling me to go see my primary physician to get a script for antidresion meds.

I told I am not capable of passing tests in order to get a new job.  In my career field employers are requireing that candidates pass tests in order to be hired.  I used to pass these test.  Now my though processes are too slow.  I just cannot make the grade any more.

My wife and I were thinking that I might need to file for disability for cognitive reasons.  After my appointment today it does not seem my neurologist will be any help in this regard.  What options do I have?  I talked with a social security representative and it seemed clear that I need the backing of my doctor to even be considered.  I have no money all my credit cards are all past due and I will not be able to pay my mortgage next month.

Tired, cannot concentrate, no work, no money.  We are learning all about food pantries and filing for food stamps.  But,  that is not enough to make things happen.  It was not that long ago we were helping homeless people and paying rent for others so they would not be on the streets.  Now we are looking at such things potentially.

What to do????????????????????


C.R.A.P


"If, of thy mortal goods, thou art bereft,
And from thy slender store two loaves
alone to thee are left,
Sell one & from the dole,
Buy Hyacinths to feed the soul"
- Muslihuddin Sadi,

[pennst8r]

Quix suggested I tell you about my differential Dx, paroxysmal dyskinesia dystonia. I have excrutiating spasms which cause my hands, feet, legs and neck to twist into interesting positions. I also have both large and smaller "jumping" muscles. Until I had my hubby videotape a few, I was not really taken seriuosly, though no one suggested it was in my head either (Lord help them if they had, lol)

There are many types of dystonias and dyskinesias, ranging from merely annoying to quite serious. I have found several articles which DO link dyskinesias and dystonias with MS. If your neuro is worth their salt, which it seems they are not, they should be aware of this.

If you would like me to look up those links for you, let me know. I'd be glad. I do agree with the folks who suggested that you get a new neuro. I took me several to find one whose ears still function past the size of their ego (sorry, couldn't help it).

Penn

[MCBCON]

thanks

[Rena705]

So sorry to hear of your trials and tribulations that you are facing right now...I hope that things start to look up for you soon honey!

I have to agree with the others that you need to:

1.  Try to find a new neurologist
2.  Try to get a neuropsych consult on the go.

I realize how difficult both can be as I have been through it myself but perservereance is an important word to keep in your vocabulary.  I had to fight my way through but I am finally being referred to a new neuro and I have had the neuro/psych evaluation done and I was given anti-depressants and I am feeling incredibly well since starting them.

Prior to using the anti-depressants I was having a terrible time trying to speak but apparently these meds make your brain react faster and therefore my speech is back to normal as it my though process.  I was amazed that after just one week on this med I was speaking almost normally and was able to function a whole lot better.  I was diagnosed with depression and while I knew I was feeling a little down I really had no idea that depression was such a large part of my difficulties!  I am now on a med called Citralopram and it has done wonders for me.

I hope that you might be able to give them a try through your g.p. even...if they do help they may also help you think more clearly and therefore may help you with the testing you have to undergo for your job!  Please at least mention this to your g.p....at least if you can get to the point of passing the tests for your job then you can probably afford to have the neuro/psych testing.  Believe me honey...I was VERY hesitant to try the anti-depressants but I SWEAR that they have meant a whole new life for me!  

Best of luck and lots of hugs,

Rena

[saveone]

Hey Guys I don't know if I can help or not, but I too have no insurance and certainly not enough income.  It is hard to work with all the symptoms,

So here is what I have learned during my journey.  Hospitals have programs that will reduce or cover the costs of testing, i.e.  CT, MRI. Doppler, ultrasound etc  I have had 3MRI, 2 CT, Doppler, ultrasound, cardiac stress test, upper GI, evoked potentials, neuropsych evl and I can't remember what else.  Some of these at my local hospital and some a UK Hospital.  All the tests I mentioned where covered by the hospital.  They did not charge me one cent.  But the doctors who perform the tests are paid separate, not part of the hospital coverage.  They however have reduced their fees for me and/or set up payment plans.

We have a clinic here that provides health care based on your income.  I pay 20% of the cost.  They also have their own pharmacy that uses the sliding fee scale.  I was amazed that all of this was available.  I had not been to a doctor in years.  When I worked and had insurance I didn't have the time.  When I had the time I didn't have the money.

Anyways thought this might help.  If you look around you may find assistance that you were unaware was available.  The neuropsychologist even reduced his fee from 1500$ to 400$ and is allowing me to make payments.

Now the really good news.  Because I used all the services and kept records/copies of everything(which I had the local SSA office fax to her) it appears my disability is going to be approved.  They are waiting on my neuros notes and she said we could wrap it up.  She went ahead and put me in paymt status so I would be issued a medical card.  It will back up and pay all of my doctor bills from 7/31/08.  That is the day I first saw a doctor.

That is why I would encourage you to file for your disability.   You need to establish the start date.

Hope this helps

terry

[doni54]

Hi MCBCON,

I'm so sorry you are going through this.  I agree with everyones suggestions, especially about finding a new neuro.

I too do not have health ins, or the funds for lots of testing.  I'm just taking it slow for now.  I also know about not having work, as we lost our building business in Feb of this year.  If not for the love and thoughtfulness of friends we would have been homeless.

Things are better now, as they will be for you.  I am praying for things to improve for you and for you to find a neuro who will be what you need.

If you ever need to talk, please feel free to pm me anytime.

God Bless,
doni

[MCBCON]

My experience with Anti-Depressents is that they make me more tired and do not do much for me.   I am willing to try them again.  But, I cannot take anything that makes me more tired.  It is hard enough already.

Any suggestions in this regard would be appreciated.  I cannot think right now which drugs I have taken.  I can talk to my wife and go over records.  I do know that I felt like I was spending money I did not have on drugs that made me tired which caused me to be more depressed or feeling hopeless.

[Salamander2]

It is scary to be sick and nowhere to turn.  I would get busy and get my medical records.  Apply for state disability, your PCP can do the paperwork for you.  This will buy you time to get the permanent disability ball rolling.  Get a second opinion.  Ask your PCP for recommendations, and check to see what the Neuro is especially interested in (MS, Lymes, Migraines, etc).  Make an appoint to just talk.  Get a feel for how agressive they are in their diagnosis and treatment.  Once you make a decision, take in your medical records for review and to avoid repeating expensive tests.  
Repeat as necessary.  
The thing is, we know our bodies better than anyone.  If we say something isn't right, it probably isn't.  Good luck and don't give up.

Blessings,
Sally

[Amyloo]

This is terribly sad and I am so sorry.  Don't forget about state disability, which pays for a year I believe.  It is much easier to qualify for than SSDI, and it can pay while you wait.

God bless you, Amy

[Tahiri_Veila]

I am sorry to hear of your struggles.  I agree with many here, but understand that it can be to expensive.  Do you trust your PCP?  Would he be able to give you the backing you need for disability? I agree you need a new neuro, but cost is high especially without insurance.  The cost itself is why I have stopped looking this summer.  I had used up all of my savings and my credit cards were all high.  I had to stop or I would not be able to provide for my child.  Luckily, I do not have the problems you are facing to the extent you are.  We don't have tests at my work thank goodness, becuase I am sure I would have struggled this last summer.  

I know that your extended family can only do so much, but have you thought of asking your religious community or neighborhood if they can help.  I know that I can turn to my religious community if I have to.  I try not to, but sometimes you must.  If you are near Utah let me know and I would be glad to give you some more pointers available in the area.  I don't know what is available outside as I have lived here all my life, but there are many things here that can help you.

I hope you find some relief.  Feel free to messsage me anytime.  I also know that everyone here wishes they could help more.

Tahiri

[Lulu54]

we're all thinking of you as you struggle with this neuro and all the other problems you and your family are facing.  I just would second everyone else's view that you need to find another neuro - this one sounds like a loser to me.  Keep us posted, Lulu

[Quixotic1]

I think your neurologist sounds like a total loser.  How can he tell that muscle jerking is not from MS, when it is clearly a known symptom in MS?  How can he distinguish the slow cognition of MS from the slow cognition of depression from MS?  Does he even know that depression is a PRIMARY effect of MS?

I agree that you need neuropsych testing, but it can be expensive.

It sounds like you could benefit from and anti-depressant.  Depression is so intertwined with the brain pathology of MS and also with the situation in which it places us.  Perhaps if you follow up with your PCP, get the med, and then go back to the neurologist for his blessing regarding Social Security Disability.  You need to get that underway because there is a 6 month waiting period before payments start, I believe.  When they pay, they do pay retroactively for the 6 months, but...

If the neurologist thinks that you are possibly having jerking as a side effect from one of your meds, he needs to do something about it.  The med needs to be replaced to try to prevent the movements from becoming permanent.  This guy is an idiot!

I'll go get Lori - she's our expert in Disability matters.

I am so sorry this is happening to you.  It makes me ashamed of the health care in this country and of certain members of my profession.  Do you qualify for Medicaid?

Quix, thinking about you...

[saveone]

I also haven't any insurance.  I don't know which of area of the country you are in  or even if you are in the States.  Anyhow, I had a neuropsych on Sept 29.  It was done in Lexington KY.  The doctor because I was self pay only charged me 400$ to do it and then set it up on a payment plan.  If you are close enough to lexington that you could travel and you are interested just send me a note and I will PM the name, address and phone number of the doctor.

I am undx. But the eval says I have a white brain matter disease and my neuro has written 2 different dx, demylenating disease and progress memory loss.  I also have a counselor.  My point is even tho I do not have a dx of MS I have enough that SSA is comfortable giving me my disability.

Happy Holidays

terry

[jensequitur]

Time to dump that zero neuro and get yourself a hero neuro, I think.  It's amazing how many of those there are out there.  But without health insurance, what can you do?  

I think that your best option is a neuropsych evaluation.  In order to prove that you're cognitively disabled and unable to work, you've got to have that evaluation.  If the neuro won't get you assigned to a psychologist, then go through your PCP.

[MCBCON]

Well,  there is only so much my extended family can do.

As for my neurologist is concerned I cannot comment too much right now without being angry.  So, I will leave that for another time.

[doublevision1]

ps: beautiful poem, BTW.

[doublevision1]

Will your neurologist or PCP refer you for a neuropysch evaluation?  If so would you have to pay out of pocket for this, or would your insurance cover it?

Did your neuro tell you how he came to the conclusion that your coginitive issues are not due to MS?  It would seem that a neuropsych eval would be the best way to determine this.  I would think.

So sorry to hear what you and your fmaily are going through.  It must be completely overwhelming.  Do you have extended family who would be able to provide some kind of support?