Trip to MS clinic at UMASS in Worcester ..and kesimpta

[Lazarus]

So, this is what happened…

So, I saw neuro at Worcester ms clinic for 90 minutes.
He said the local neuro I saw last week) was wrong when he told me to just get a booster and that evusheld was not important. Bomprezzi said they wanted us on evusheld and that I should get another shot in September. He said he thought I could get that through my pcp right here where I live. (Not have to go to hospital) he does not have privileges but thinks he could work with my pcp so they would act as a team of sorts.

He told me that the doc I saw last week was wrong about rituxan having potential to damage my liver and that it was in fact the same as Ocrevus. I asked about kesimpta and he said Ocrevus, rituxan and kesimpta were equally useful and I should think of them as interchangeable. If I do the kesimpta he can arrange to have it mailed to me and so I would not have to go to Worcester for treatment. I can give it to myself. No more hospital infusions.

He said Last week’s local neuro was wrong and Dr. Baquis was right about there being no clear correlation between mri results and disease activity.

He also told me that taking that incontinence drug Carole asked about..Myrbetriq ..(sp) and taking vesicare at the same time would work and eliminate dry mouth.

he said a lot more but this is the important part.
I think I will switch to kesimpta.

[agate]

It sounds as if you liked this neuro and agree with his comments--? This was a new neuro for you, or was it someone you'd been to before?

Kesimpta sounds good. Looks as if it's a subq injection for 3 weeks, then just once a month after that. That would be a huge improvement for you, wouldn't it? No more traveling somewhere for an injection--you'd have more time and energy for things you'd like to be doing.

[Lazarus]

Thanks Agate. I set things in motion with this new neurologist. We have already communicated today so I am pleased with being able to contact him and get responses. I think I am making good decisions. About switching to kesimpta.

[Ikoiko]

The local neurologist really didn't know what he was talking about--scary. This underlines the need for an MS specialist, rather than a general neurologist.

My GI doc asked me why I couldn't use the same neuro for MS and Botox for migraines. No, I can't!!!

[SuzE-Q]

Good job, Laz, you must feel so much better with his knowledge and expertise. I like Kesimpta because it's actually trialed and approved for active SPMS.

Your bladder med combo sounds good too. Please let us know how these changes impact your symptoms & health!

[Lazarus]

Yes! I had read about the SPMS approval. .
You know what was really a big part of my decision making….I have huge incontinence problems and the meds I take have increased. The dry mouth is so bad that sometimes now my mouth is stuck closed! I never mentioned this issue as it seems insignificant on the scale of things. But the
Incontinence problem was in the written history I handed this new neuro and which he referred to as we met.

So when he suggested the medicine change and said it would help with dry mouth I almost squealed. He knew I must be having that problem and suggested a change that could help! I mean, the guy I saw last week dismissed my dry mouth problem by telling me to suck on hard candies.

Anyway, now I will start reading about kesimpta so I can coherently explain what it is!

[SuzE-Q]

I would greatly appreciate that thoroughness on his part since dry mouth is very annoying, I'm glad he even considered it as he read through your history. Mirabetreq is not an anticholinergic either, which is good to reduce that burden where possible. I hope it works in combination since you did not feel it was helpful as a stand alone bladder med, I personally really loved it. This is a nice example of a doctor who has a lot of experience with MS meds, they see patterns and often have solutions from experience with the MS population. Good job, I'm very happy for you!

[Lazarus]

Thanks Ikoiko
actually the great neurologist I had for 25 years was not an ms specialist. But he was a scholar and researcher so that seems like the key. In all those years whenever we were at an impasse he connected me to someone for a second opinion. That’s how I met Volmer.

today I had a couple of questions so I activated that portal thing. I got answers to both within the hour! And he sent me a research paper to read about one of my questions. In one day I have changed my entire situation. New doc at a different location and 2 major medicine changes. Whew!
I am hoping to start kesimpta soon and I cancelled the steroid infusions.

[Earth Mother 2 Angels]

((((((Linda)))))) ~

How fortuitous that you saw an MS specialist, who immediately contradicted your new local neuro and put you on the right path. I hope you have tremendous success on the Kesimpta and your new bladder meds. I'm sure you will be happy not to have infusions any longer.

I can't count the number of neuros, who saw and treated my sons through four decades. Most of the neuros were called in, when my sons were hospitalized.

It was alarming to discover how little any of them knew about epilepsy. Essentially, they were drug pushers, because that was their only approach to treating seizures. A great majority of parents of children with epilepsy, and adults with epilepsy, who I have met personally and on line, agree that neuros are not typically skilled in seizure management.

Unfortunately, neuros who specialize in epilepsy, Epileptologists, are not abundant. I would imagine the same is true for neuros who specialize in MS.

I'm so happy you found this MS specialist. May all go well for you with the changes.

Love & Light,

❤️❤️❤️❤️

Rose

[Lazarus]

Thank you Rose. I do appreciate your responses…to everyone. Your long journey helps all of us.

[Ikoiko]

Linda, it seems you have found a great new neurologist!

[Ikoiko]

Rose, it depends where you live on whether or not you can find an MS specialist. In Boston, you can't throw a rock without hitting an MS specialist. On the other hand, in New Mexico there is only one or two in the whole state.

[Virginia]

Linda, I was immediately impressed when I read that this Neurologist saw you for 90 minutes. That in itself is a wonder. I am so glad you have someone you really feel good about and it appears he is most willing to answer any questions you might have, even if you are not in his office. He sounds very knowledgeable about MS and the many drugs that have come down the pike in the last few years. Glad you have found such a Doctor.