Saw my Neuro today for my 6 month recheck. First I'm surprised he didn't do any bloodwork for my Tecfidera...he did in the beginning at 3 months but nothing today. Told him about my constant headaches and neck-aches that I have been having for at least 2 weeks. He almost wanted to try and give me the same script that he did last time but I had to remind him that it didn't work. He now prescribed Topamax for the headaches. Hopefully that helps. He said if I'm not getting relief from it in a week to call my primary doctor because it may be sinus infection related as I had one last month (he didn't even check me out to see if it could be that). He had a student with him again this time that does all the testing/notes and reports it back to him when he comes in. Not sure I want to stay with this guy...New Year I will make a decision though he supposed to be 'ms specialist' and does all the conferences but sometimes he just irratates the heck out of me.
There was a new nurse today. When she nurse was in, she asked where to have rx called into if he prescribed something for my headaches/neck pain and I told her the local pharmacy and gave her my new rx insurance card for next year (trying to be proactive). Now that he is doing the rx filling instead of the nurse like times before, he sent it into the insurance that I will have next year (thankfully I received an email to alert me). Called his office and got that mess straightened out. Now to wait for the text to come that my rx is ready to pick up. Just been a very trying day. Was probably a 90 day supply so won't be in until tomorrow if they have to order it.
Can this day be over yet
Jessie
Written by
bxrmom
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bxrmom , I hear you! It's enough that we deal with this God awful disease, but dealing with neurologists can be just as trying! I was diagnosed in 1988 and have had only 2 neurologists that instilled confidence. I'm with you, I think if I were you, I'd be looking for a new neuro next year.
SueAB This is the 2nd neurologist I've had since moving to MI because the first one closed his practice to move out East....was going to leave him right about the same time. When I was in WI, I had 2 Neuro's because one had left his practice because he didn't get along with other Neuro's in the office (no compete order was signed). When he did move back to WI, got to see him again but only once because I moved to MI.
Think it will be time to 'move on' in the new year
Hang in there, my thoughts about most neuros, They believe they are gods gift to mankind. I am now on my 3rd neuro, whom I am very happy with. She knows her stuff and treats me with respect and asks me questions & LISTENS. My other two claimed to be MS specialists but I wonder, based on my current experience with my neuro. Just be patient they are people too and it might take a while to find the best one for you. You have people here that understand what you are dealing with, and support you so be easy on yourself.
Midgey_Midge06 Thanks, I'm going to hang in there. Just the more I think about it, I need a new one. Thought about it before my visit earlier this year and then after today's visit I'm ready to start looking. Just don't know if I'm going to look for MS Specialist specifically or not....time will tell.
Hi, by coincidence I had problem with my Neurologist last week and I am thinking not go back to him, since is the third time he puts only his Nurse or old Medical Assistant to talk to me and waste time with refills and not understanding sign and symptoms I describe and named, getting confused and mixed names, not even knowing the brand and generic names of the common prescription after being working a long time in medical office. And my Neurologist never takes note in the computer like other doctors I go, where they input precise information, not what the MA understand or type without knowledge. I made a list of my symptoms in the last few months handwriting and she did not want to read, or does not understand handwriting. I did not know what was my record from the last visit because I have my sister with me, first time to visit, that insist to my Multiple Sclerosis doctors that I have for over 2 years. My MS doctor also arrived to talk to me saying my case is being complicated for other concomitants pathologies. She opened her mouth already saying that she does not believe that I have MS since she does not have MS, instead she has some kind of brain virus, etc. I have advised my sister for learning something about MS before my appointment and read my exams, MRI, and test. She said it was too much complicated. During the appointment, the doctor was laughing at her for her ignorance, saying to her that i am her patient for a long time with right diagnostic, and looking at me answering her dummy compare knowledge. My Neurologist, MS has also certified Psychiatry, and it shows on his business card and reports that she refused to read. Se said that I just need a Psychiatry, not MS specialist, neither Neurologist, what a Genius. She asks my Neuro- MS- Psychiatry doctor for another reference, not him for I change my diagnostic.
I am telling all this blabla because who made the report was not the doctor and it was made after the appointment with mistakes in the notes. I asked for the report from the last visit without reading about because I have a meeting set up from MSAA next day, to see how they could help me. When I read the report, written by his MA, was showing that I got the referral to go to Psychiatry to check for Bipolar Disorder Type I. Wow, I got so mad, at the meeting that I did not answer anything correctly. I could not answer the question with the Nurse in charge having completely another view of me. I have mentioned that I have a sister Bipolar Type One, but what a hack the MA mad all messy description all wrong. At the end, I could not have any decent appointment neither last time neither last week. Time to change the doctor who types his own conclusion direct in his computer as Dr. Steingo does, also Dr. Kantor does, my ex- Primary Doctor from Cleveland Clinic also does very well, only her typing medical information. MA is only pre-consultation, not to use the time of the doctor appointment to request refill that could be requested by phone. Medical doctors ultra specialist charge much more money than Primary Care doctors and its not about review refill, only prescription to adjust, and refills are made by MA before or after the doctor visit.
Going back to your Tecfidera, I took for 2 years and I have to make blood test every 6 months at least or even before that period of time. Tecfidera caused to me very low white blood count after the end of one year and a half. This is why have to check more frequently also all blood test in general. if the doctor is too much-occupied mind and do not know to concentrate on each patient case, that is necessary absolute attention to interpretation each individual, than its time to change to the one who knows how to proceed like the old times, and learn to type or even use a microphone with the computer for type later, not let go by medical assistant who do not know Medicine in fact. Doctor are not the same, and we have to have more empathy to get the good communication and understanding each other to get right treatment and do not miss anything during these few minutes period of time of consultation imcompleted.
Miriade Definite time for you to change Neuros too!! I have no words for what happened at your appointment!! Think I may call my neuro's office tomorrow and ask about checking blood work since it was not done after my appointment.
Thanks you guys. I had my bloods taken a month ago, initiated by my ms nurse, and I haven't got the results yet. I must phone today, I have totally forgotten. You guys are paying for a service, you deserve the best. Blessings Jimeka 🎄. ☃️ 🎅🏻
bxrmom Wow Jessie sounds like we go to the same neuro. Every time I go he has a new student doing the interview doing all the questioning and notes. Then he comes in and delivers the verdict. Haha. I guess I wonder if he gets all the evidence before delivering the verdict. I’m gonna have to be a bit more direct with ALL my concerns next week when I see him. I’ve been stuck in a very deep rut the few weeks and the mud keeps getting deeper including my neck pain and headaches also. Something has to be done about my neck and shoulder pain or I’m gonna lose what little mind I’ve got left. And the headaches keep getting worse I think from the neck pain.
All my doctors with students have always asked if it is ok for them to talk to me first. It is within your rights to tell them no. Maybe say something to the intake nurse or front desk when you check in next time that you are not ok wirh a student!! It makes me so mad that we have to manage our doctors rather than the other way around.
I am on Tecfidera now for 2 years. I occasionally have a neck pain on the right back side of the neck, at the bottom of the skull, and it runs up into my head. It can get to the excruciating point. I get nerve block shots from my Neuro for it when I can't make it go away. It is the right occipital nerve that runs over the top of the head all the way to the eyes. There is one on each side of the head. He says it is unrelated to MS. Most of the time when I feel it coming on, I will exercise my neck by looking from side to side and holding it a second or 2, then repeat a few times, and it eases up, and sometimes goes away completely. I have used a heating pad, or warm rice heating pad to ease it off. My Neuro says it comes from stress and the tangling of those nerves. This may be entirely different from what you have, but that is my experience. Hope it helps you or someone.
Right now, I will be getting my 2nd dose of IV solumedrol for a flare that didn't go away with a prednisone pak. Took the nurse 4 sticks to get the pick in right. This was a new experience for me! Not as bad as I thought.
I have a wonderful Neuro in Winston-Salem, NC. He is not an MS specialist, but he and his nurse have been very supportive, and respond immediately to my calls. The nurse is very compassionate, and usually reports to him, and calls me back with a Rx for whatever is needed. Don't stop trying to find the right Neuro! I did go to an MS specialist at NC Baptist Hospital once, and her diagnosis of me was entirely different from my other Neuro, so I went back to him and stayed. I am glad I did. He listens and helps me.
Make sure they follow up with blood tests. My white count dropped like a stone from Tecfidera. If your count is low, I would wonder if some side effect could be the pain you have???
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