I Have A Question?

[kycmary]

I just found out my grandsons wife has been Dx with MS, she told me her Neuro said she wasn't bad enough to be put on any medicine! I have never heard this before. Also when she called to get in to see her for her follow up MRI she was told "she only has so many appointments per month & she needed to call at the beginning of the Month before all the appointments were gone. …...she finally had her pcp schedule an MRI for her. She has an appointment to see her Neuro in January. I am mad enough to chew nails & spit bullets. I told Josh to get her to an MS specialist in Cincinnati asap.

[kdali]

It’s called wait and see, some neuros still choose this option for their patients but I am inclined to recommend that decision be collaborative and to find a MD who will be available to her when the MShit hits the fan.

[kycmary in reply to kdali]

That's why I told my grandson to get her to an MS specialist.

[kdali in reply to kycmary]

I hope he does!

[MS_Indestructible in reply to kycmary]

not all neuros are MS specialists even if they call themselves one! as I found out.

[rjoneslaw]

Yes she needs to see another neurologist ASAP

[Royjr]

Yes, that do sound like some BS. I agree with everyone else for her to see a Neurologist with some knowledge of MS. At least she’ll get a second opinion on her diagnosis.

[Peruzzot]

Speaking as someone who started out with a neurologist who specialized in brain traumas not MS the good ones will try. Sounds like she has one that couldn't care less. I now have a neurologist who specializes in MS and he's great. I can usually get an appointment with him in at most 2 weeks. Those who specialize in MS are up to date on all the latest research and will recommend patients to participate in on going research if they think their patient will benefit from it or might help bring a better understanding of how MS works. I am currently participating in a fatigue study that my neurologist recommended me for. She really needs an MS specialist.

[ssdw1958]

I think NO I know it’s time to see another MS neurologist. When I found out I had MS I had to find a neologist because the one that diagnosed me retired so I called one hospital and they said they had an opening In 5 months. Then I called another doctor and with in 2 weeks I had an appointment.

Good luck to you think positive.

[Jesmcd2 CommunityAmbassador]

I'm so glad they have you to look out for them kycmary !!! Keep on them! We all know what happens when we don't! They can also call MSAA Toll-Free Helpline: [phone] ext 154 for good Neuros!🤗💕

J🌠🦃

[Juliew19673]

2nd opinion needed and someone with actual experience w/treating MS...

[greaterexp]

You're a terrific grandmother who looks out for your family. I can't imagine a doctor with that kind of attitude. Please encourage them to see a REAL doctor without delay. Yes, some would suggest that MS is generally a slow moving disease process, but early and aggressive treatment can make a huge difference in slowing progression and preventing or delaying disability.

[carolek572 CommunityAmbassador]

kycmary You have the best advice which is not to just wait and see. Find another neurologist for a second opinion. That is what I did because my first neuro had the same wait and see attitude which I didn’t like. Unfortunately, in my situation, I had to wait 3+ months to see the best neurologist in the Boston area. I am a patient of hers still, and she IS one of the best in the nation. Best of luck to your grandson’s wife.

[kycmary]

Thank you all I was very upset yesterday about this, her Neurologist Is the one I had that wanted me to go 4 months without anything as she doesn't understand anything about MS. She is also a shrink can't spell the other word.

[MS_Indestructible in reply to kycmary]

those are two very difficult areas to specialize in. I would find one who choose MS and other autoimmune diseases as a full time specialty.

[goatgal]

kycmary You are wise to suggest finding a MS specialist for your grandson's wife. Some informed neurologists might take a different approach than wait and see. Wouldn't it be wonderful if her MS could be held at a stage where it "isn't bad"? What is the purpose of waiting until it IS bad? As far as I know, more MS = more disability in more functions.

[kycmary in reply to goatgal]

Tuesday we had our Thanksgiving dinner down at our daughters & I asked how she was doing . She said ok just some numbness & tingling in her hands. I asked what medicine they were going to put her on? there gonna wait & see how she does!!!! I almost bit my tongue off. She has the same Neuro I had & I had forgot about that.

[kycmary in reply to goatgal]

I'm doing this in segments as the phone keeps interrupting me. her Neuro is the same one who wanted me to do 2 infusions of Tysabri then go 4 months without anything & see her late April. OH NO!! She is a 3rd grade teacher she has 4 little girls to take care of 11,9,7 & 2. That's why I told her hubby get her to an MS specialist. phone is rining

[goatgal in reply to kycmary]

kycmary It doesn't make sense to wait and see. By the time she has new or worsening manifestations of MS, DMTs may not be as effective as they would be now. If she is a teacher, she uses her hands all day as she instructs. Even though classrooms don't have blackboards, chalk and erasers, teachers still use keyboards, white boards, pencils, pens, markers; they pass out papers collect lunch money, fill out forms: all these functions need working hands and fingers. Waiting doesn't make sense: she has problems that could be addressed now. As a retired teacher, I know the value of working hands in the classroom.

[kycmary]

OH boy! have I had a day 1st I had my MRI It was w/wo contrast went fine I will know something in 3-4 days. I get home am resting when the phone rings a female who says she's working with my ins.co. & does say the right name, she has called to help me set up an appointment for an exam to see if my diabetes is causing any damage to my vision … I tell her I already have an appointment with my eye Dr. Should be end of it NO she wants to set up an appointment at my home that is free of charge to 'compare results'?? tells me my Dr. said to. I "lost it" then hung up & called U.H.I have to call back on Monday as the dept. I need to talk to is closed for the holidays. just because I'm 65 does not mean I'm senile!! I went senile years ago haha hoho heehee

[RoyceNewton]

Change Neuros without delay. Research shows that the sooner she starts treatment the better.

[kycmary in reply to RoyceNewton]

I got to talk to my grandson last evening & told him how I felt about all the HOGWASH those Drs. were putting his wife thru, and how I felt. He gave me a big hug! He said he felt the same way about this situation & we talked. They were both concerned about it. they will be here later on & get to tell her what I know after 25 years of dealing with MS

[Juliew19673 in reply to kycmary]

Yes - I have found the BEST MS advice comes from those who have had to walk down this path.

[RoyceNewton in reply to kycmary]

it is fun, rather confusing but fun never the less

[ssdw1958 in reply to kycmary]

Let her know what is going on with you so she will know it’s not just you saying things. And to let her no you care about what is going on with her. What a good grandson.

[MS_Indestructible]

great advice, the sooner she gets on a DMD the better. Have them call MSAA for help.