So Frustrated! Newly Diagnosed

[wondering2]

Newly diagnosed and so frustrated with the experience! Wondering about other people's experience with their neurologist??? Every time I had a test done I was the one to call and ask them about results.. I feel like I have done all the leg work. Is this normal??? Feel like I'm at a loss. Just wanna feel better. Why does it have to be so hard just to get medication?? Is this normal for other people? Go to your doctor they say this or that now go figure it out?? I struggle ever day I hurt wanna be able to function like normal human!! Wish was some one close could talk to!! Tell them this whats going on is it normal I'm I making big deal out of this?? Please need advice someone else experience... What did your neurologist do for you?

[SNOOPY]

Hello wondering2 and welcome to MSWorld.

Why does it have to be so hard just to get medication?? Is this normal for other people? Go to your doctor they say this or that now go figure it out??

Do you mean your Dr. is having you research and choose which Disease Modifying Therapy to use?

If so that is very common.

The majority of Neurologists allow their patients to choose which DMT they would like to use. Some Neurologists have a preference but it's still up to the patient.

Every time I had a test done I was the one to call and ask them about results

Throughout the diagnostic process I had follow up appointments and my test results would be discussed at that time.

My Neurologist did call to let me know they needed to redo my MRI since something showed up that needed to be rechecked.

[Justsayyes]

Hi Wondering! Hard to say if your experience is normal, or not. I do know some offices are easier to communicate with than others. At my neuro's office, he has an assistant that acts as a liaison between the doctor and patient, and that works very well.

It does take some time to get things in order as far as medications. Some of that is caused by insurance approvals. Some delays are due to medications that need to come from a specialized pharmacy, and getting all that set up.

I think it will get easier for you. If it doesn't, then perhaps a change of physician if they are just plain inefficient. The worst group of docs I've come across was my daughter's dermatology group. Talk about messed up.....daughter told me she was sick of micromanaging their office, lol.

[wondering2]

It frustrating for me cause seemed like I got test done I'd wait to see what results were thinking the doctors office would call me.. Nope i was one calling after the waiting period asking my results in. Getting a response I'll talk to doctor and call you back or need you come in to discuss the results. Which is fine I know I need to come in to talk to them. But it was I'll call you back and I know it'll be two to three days before I hear back from the office. Taken me calling them back getting "oh you were on my call list" I know I'm not her only patient but still fustating!!

For instance called today asked about my meds doctor wanted me to be on. One approved I already knew that. The Other the lady said got denied due to not trying steroids first. But see eairler I called special pharmacy asked about my med the man on the phone said they talk to my doctors office case was closed cause the doctor was going a different route... Oh first I heard oh this I told the man.

That's why I called my doctor today asked what going on with my med situation. She's telling me got denied the pharmacy telling me doctor wants go different route what is it?? Again I get I'll talk to doctor call you back!! Also asked is there anything now for pain she could call in to local pharmacy. Trying to have patience but it's so frustrating


** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Mrsparsons]

It is very frustrating. My neurologist spends maybe 10 minutes with me, does a limited exam (if any), sees 40 patients a day and double books, so he's always at least an hour behind. His office staff always says they will call and never do. After not hearing about a date/time for my most recent MRI, I called and found out it was scheduled but nobody called me to tell me.

I was supposed to be referred a week ago to an MS Specialist. I called the neurologist's office Friday to ask if they heard anything. I was told by the lady who answered the phone, "no we haven't and we will call when we do." I called the referral center at the institution today to see what was going on. They said they had not yet received the referral. It took me 5 minutes on the phone and I have an appointment October 17th.

I would suggest asking around for the best neurologist in your area. Unfortunately, where I live there are few.

[wondering2]

Sorry about your struggles and frustration. Its gets old and annoying. There are only a few neurologist around here also. I'm trying to have patience with this office.

[pennstater]

I like my neuro a lot and am bummed he is retiring. At diagnosis, he did give me a bunch of documents and websites to check out. His advice was to educate myself and become my own best advocate. That being said, when I asked if he had a recommendation on meds, he did limit it to two. But at the time, most of the meds had similar efficacy rates, so it came to lifestyle / comfort choice.

I have been fortunate that always call within 24 hours. Don't be afraid to ask your neuro what the expectation is for returned calls for medical issues, as well as administrative nonmedical issues. Then see if the office follows that.

Good luck.