Letter to my doctor an ok idea?

My next appointment with my doctor is in January.  For me that is an awfully long time to wait.  Since I feel like I am in limbo between is this RRMS or progressive I would really like to get a more for sure answer.  I have been dx'd almost two years now. It is also important to my husband that he know.  

I talked to my husband last night and he said that the doctor DID talk about PPMS as another possibility.  So we are now both confused.

Would it be appropriate to write my doctor a letter asking him if he has a better idea of where I am at with MS at this point.  He has compared films.  I sent him a good time line of events since I started ON 2 1/2 years ago.  I mentioned my times with Trigeminal Neuralgia several years before ON.

I do not want to offend him.  I will let him know how much I appreciate him and he has a wonderful bed side manner.  He sat down in a chair right in front of me and looked at me and LISTENED!!  That is so important.

Should I send him a note? An answer no matter what it is would still be an answer.  ;-}


LA

[HVAC]

LA

I am not sure if this is the case, but the MS Specialist who talked at the MS Society said he has to be very careful not to put progressive anywhere in his notes because insurance companies limit the treatment. He calls most patients RRMS so he has more options.

Alex

[Deb61]

I agree with Alex.  If you have progressive written in the notes, you may not have any treatment options.  I don't know if a letter is a good idea.  This is a red flag, in my opinion, to your insurance company when they look over your paperwork.

There's more aggressive treatment options that could be explored with you.  Perhaps he'll want to try that with you before determining that nothing can be done.  Once you have PPMS in your file, that closes the door on Tysabri.  There's paperwork, of course, that you have to complete prior to starting the medicine and you have to write in what type of MS you have.  If you put PPMS in the blank, you will get denied.

[LATW]

AH!!  Ok. I knew I would get some great advice here.  It is my wondering where I am and NOT my wanting anything else put into my records.  

but I do see both of your points.  I will skip the letter and just go on as normal.  I can't say I would try Tysabri.  The risks to me seem too high at the moment.

One of my questions or wondering has been will insurance cover a wheel chair for someone who is not progressive.  I don't know if I need to get that diagnosis in order for insurance to ok it.

LA

[shermay]

I am stunned that your medical records will affect your Insurance , and what they will pay out.

For me, I would write a letter to your Neuro to ask what status he has you at the moment just so that you can rest easy:/

Having said that, with what I am finding out about the USA medical system and your Insurance I would tread very carefully.  Really it comes down to the fact whether or not you can wait until January.

As far as I can see from an outsiders point of view with regards to the US medical system, does it make a difference if he gives you a dx of RR or PP now or in January??  It would appear to me that he will stay at his dx of RR so that you are able to have more access to medical care??

I really have little understanding of the Med Ins. in the US, but surely he will want to do whats best for you, and maybe telling you that you have PPMS, but not putting it in your records?

Like I said, personally I would write a letter, regardless of what the outcome would be, nothing is going to change from now until Jan.  So if it's going to be put into your records in January, then you may as well find out now??

I don't know how you feel about that? however I do feel that to have an answer now would be better than waiting 3 months?

BTW avoid Tysabri at all costs, more than 24 cases have been confirmed, but info is only available to Neuro's.  I had my second opinion on Thursday, and the Neuro told me that it's a LOT more than 24.  Tysabri will be withdrawn in 6 months.

Hugs,

Debs xxx

[LATW]

Hi Debs,
Our health care system is really getting tight right now.  Our insurance is paying less and less.  My medication costs have risen just recently because insurance is paying less.  

I need to think about what to do.  Maybe Quix would have a good solution  

I have no plans on Tysabri ,trust me!!

[HVAC]

The MS Specialist said the insurance companies have hijacked the research of the four kinds of MS to say some kinds do not respond to treatment therefore it is not in the best interest to pay for it.

Do you know there are companies that work for the insurance companies on one disease such as MS and research everything about it so insurance companies can deny treatments?

Where did I find this out about this? By watching CSPAN Senate hearings on the health insurance oversight. From a Doctor who worked for the Insurance Companies who decided if people got a certain treatment or not. I was stunned at how egregious and systematic the insurance industry really is.

I personally believe the insurance companies are a big reason it is hard to get a diagnosis.

The money spent by the health insurance industry to not spend money on patients is mind boggling.

My health plan, administered by a not for profit, only spends 30 cents on the dollar on patient care, where does the other 70 cents go?  

Alex

[Lulu54]

LA, regardless of tthe disease or the diagnosis, if you need a wheelchair then you need one.  There are people all over the spectrum of this disease that need a chair.

If you think you need a chair, do you already have an rx for one?  If not, that would be a very good reason to ask the neuro to meet with you sooner rather than wait until January.

good luck with figuring this one out.  
Lu

[LATW]

I have an RX for a scooter because that is what I asked about.  I will have to make that appointment.  

LA

[rendean]

LA,

Is it possible to have the doctor call you to discuss the diagnosis? It wouldn't involve anything in written form. You stated he had a great bedside manner, perhaps this will carry over into returning a phone call to clarify things until January.

Personally, I would call and ask for a return call by the doctor and specify that you would like the doc to return the call.  I have found it matters what you say when asking for clarification. I would  put the emphasis on you not what the nurse conveyed. Example: I am confused about my diagnosis and treatment, could Dr. X please call me at his convienence? versus The nurse totally confused me could the doctor explain.

I agree with limiting what is actually written in your records and you might want to convey that to the doctor at the begining of the return call.  I am currently having isssues obtaining company disability due to incorrect  charting by one of my doctors.

I'm with you January is a LONG time to wait and wonder.

Wishing luck in getting this clarified. Knowledge is power.

Also sending waves of BIG hugs your way,
Ren