I know that each case is different as each person is different. My mother used to get quartezone shots in her hips when she was in her 30's. The quartezone ate away the balls in the joints of her hips. She has had both replaced. Yes she has other ailments such as Osteoperosis. She also has had many surgerie's to repair and pin up her bladder that keeps falling. She has so many issues I can't even go into them now and she is only 54 years old. She is to the point now where is is on multiple medications, including Avonex the once a week shot. She can barely walk these days, and her memory and cognitive thinking is going down hill rapidly. I also have a 3 year old daughter, and am scared that she might have to endure the life I have had with a sick mother. Thank you everyone for listening, I just needed to put it out there to people who have delt with these issues before. As of yet there is no Dx for me, and I am going to try to stay positive!!!!

Thanks Again.
Amber

Amber thats terrific that you were able to get an appt that quickly....I would start out by asking him what in the world he was thinking by leaving you that message on your answering machine!

But then, I would get very serious...one of the most important questions you want to find out is where you stand on the McDonald criteria...this is the criteria which most Neuros base their dx on....he should be able to walk you thru the criteria and explain to you where you fit in and how he is reaching his decision....at this time you want to ask for COPIES OF EVERY SINGLE TEST RESULT HE HAS to take with you. DO NOT LEAVE WITHOUT THEM!

You also want to find out how many MS patients this doc treats...if he has one or two, its not enough. All Neuros treat all sorts of neurological disorders...you want to be sure the one treating you is really up on whats going on in the world of MS. YOu also want to flat out ask how he feels about you getting a second opinion. Its your right (its your body) and a good doc will not have a problem with helping you to achieve that goal- by either helping make you the appt, recommending a good MS specialist who they are in contact with- or simply giving you their blessing.

You want to talk to him about what he ruled out. Keeping in mind that diagnosing MS is based on ruling out every other disease- be 100% sure that the doctor feels that there is nothing left to test for. LYME, especially is important to rule out- it presents very much in the same way as MS and cannot be fully ruled out by a simple blood test. Did he check results with your spinal tap fluid? Did he send the blood work to Igenex or another lab known for its results for Lyme...did he rule out all infections? Did he test for defiencies in blood work like Vitamin defiencies? Can he be 100% sure based on what the test results say that he is sure? Also, your MRIs...did he read them? Or did he base his answers on what the radiologist who read and wrote the report said? IF your Neuro cannot read his own films- find another one. You really need a neuro who is comfortable interpreting these things, since they will become the corner stone of your care in the future...being able to see changes (which are incredibly minute) is key to knowing where you are in your disease progression.

Im throwing alot at you- but trust me, this is based on having both a Neuro and a MS specialist who I see every 6 months. I also have MRIs every 6 months..my Neuro is covered by my insurance, where my specialist costs me a few hundred dollars twice a year..but guess what? They always agree on what they see on my films, and so far, have agreed completely that my Rebif is the right drug for me and is working; however thru my MS Specialist, I learn about new and upcoming drug trials, things which are happening in the MS world- talks, lectures and exciting news that my regular Neuro wouldnt be 'up" on. I also find it both reassuring and comforting to know that if my regular Neuro is out of town or unavailable, Im a patient of one of the most respected MS docs in the area and his office knows me, and my history as well. Like the Mt.Siani clinic, my MS specialist is located at a huge University hospital, where they have state of the art equiptment and people, always open and ready to accept any emergency which walks thru the door..my regular Neuro, has office hours and a referral to the local ER, which isnt what I want to hear when optical nueritis flares its ugly head.

You want to talk to your doc about symptoms, too. Remember that even DMDs (disease modifying drugs like Rebif, avonex) arent going to take care of any symtoms you are experiencing- however there are drugs for things like spasticity, bathroom issues, even anxiety drugs to help you cope and drugs to keep you from dozing off...basically, if it is a symptom, there is something out there designed to help...but be wary of a doctor who throws too much medicine at you all at once- you want to be able to function without it..the goal here is to help you get thru the initial shock which you are dealing with and get you stronger so that you can control some of these symtoms....when or if the day comes when you cant- there are drugs available. The idea of DMDs is also going to come up if you are dx with MS.....this is something you need to read up on, learn about, and make a decision on by yourself...we are here to help you understand the differences in the drugs- but there are so many opinions on which drugs are best, or even whether or not drugs are the way to go- that ultimately, you are going to have to make that choice yourself. Talk to your doc about which one he thinks is best for you and ASK WHY...if he isnt totally up on the drugs, he is going to throw a bunch of pamphlets at you and tell you to make the decision...thats not uncommon; however it isnt going to help you.

Sweetie, take a friend, family member, spouse? boyfriend? NOTEBOOK if all else fails and write things down..and get copies of those results to keep at home. Youre going to get alot of info, and its going to be overwhelming...just remember that we have all been there and have all survived it...youre not alone and we will be here to listen and help you with anything you didnt understand...we are here for whatever you need..
Hugs and lots of luck.
Nikki