First Appt. with a MS Specialist - My MSAA Community

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First Appt. with a MS Specialist

Ikeeptrying
Ikeeptrying

Hello everyone,

I have an appointment to see a MS Specialist in September. I am 73 and was dx in 1998. Still mobile and symptoms aren't bad. I just feel them getting worse. When I was dx I was never offered any drugs. They just sent me on my merry little way. (Kaiser). Well now I'm SPMS and they tell me there aren't any drugs available for me. I'm not sure if this specialist can do much for me but did want to see one. I was just wondering if there's anything I should ask about. Feeling pretty hopeless. Any comments are appreciated. Thanks.

33 Replies
oldestnewest

Good luck at your appointment Ikeeptrying I'm sorry that you were not offered any drugs at some point on your MS journey as the meds have come so far. I hope that this MS Specialist is really good for you and that they have some good news for you. Please keep us updated when you can.

Ikeeptrying
Ikeeptrying
in reply to bxrmom

Thank you for replying. I'm just feeling down today. I appreciate everyone who responds here. This is the best site and I always feel better after reading comments. I will def update after seeing this new doctor.

I'm with Kaiser Permanente and live in Orange County, California. I was dx in 2007 and there wasn't much help for a person with MS then. I was dx with RRMS & when I questioned the dx I was told that if they dx me with any other type of MS they wouldn't be able to help me. It seems they have made many changes in the last few years. They did hire a very competent neuro that specializes in autoimmune diseases where most of her patients have MS. She is my current neuro. If you have more questions specific to KP please feel free to PM me and I will try to help. For SPMS, Rituxan therapy is used off-label for SPMS very successfully and KP approves its use. If the OC is close enough for you to travel to or you want the specific info about my neuro [to give to your neuro] again pm me. I was around 55-60 when I started Rituxan, and am very happy with it. ~terry

Hi Terry, thanks for responding. Good news about Rituxan. I will definitely ask this new neuro about it. I'm in northern California, don't get to the OC and to top it off I don't know how to pm you. I can do it on facebook but not here. But that's OK. I will learn how to do it. You're fortunate to have a neuro who specializes in autoimmune diseases. My guy is very nice but specializes in strokes. Thanks again for the reply, you've given me hope.

Marilyn

Kenu
Kenu
in reply to Ikeeptrying

Go down to the right lower corner and see messages, tap on it and it will bring up the pm site. Then go to post and tap. Enter in persons name and then create message. Easy to use and private 👍🙏🐾😉. Ken

thanks Ken, I'm using a desktop browser and I don't see that option, I use the chat button at the top of the page. Ikeeptrying Marilyn look at the top of the page where it says "Chat" click on that and it should take you to the pm area. Type [cut/paste] username of who you want to message. I will send you a test message and you should see a Orange circle with a number on it. Just like where the bell shows notifications.

Terry, just saw a horrible fire break out in Orange County. Hope you're not close to it. Our state just seems to have more fires every day. Horrible. Good luck, Marilyn

not close, but can smell the smoke. Thanks for the thoughts. Yes we do get a good share for fires that's for sure

I hope there’s something to offer you! If not right now, you can know you’ve tried your best and hope something comes along soon. Perhaps a few weeks of physical therapy could help you? Please let us know what happens 🤗

Ikeeptrying
Ikeeptrying
in reply to kdali

All we can do is try our best. I have a physical therapist now. I don't do too much exercise mainly because of exhaustion and joint pain. But she hasn't given up on me yet.

Marilyn, that's great news! Maybe the specialist will be able to get you in sooner meds that will help!

Ikeeptrying
Ikeeptrying
in reply to Iona60

Thank you Iona, I hope so.

To ikeeptrying what ever you do don’t give up let your doctor know you would like a doctor that specializes in MS even call your insurance co and ask where there is a nephrologist who works with MS patients. I had to push the PC to find out what I had MS or Lym Disease finally I found it took 5 years and that wasn’t a good thing please don’t let your doctor just give up on you because we know you haven’t and we haven’t either life is too short I am 59 years old I was diagnosed when I was 45 years old. I use to work with children and I had turned 50 and I was complaining and he said you know it’s only a number. Remember that your age is only a number.

Keep on moving have a good night 💤 oh o it’s 1:30 am I need to get some sleep.

I have an appointment with a MS specialist and am encouraged by the responses here. I''m sure that subconsciously, or not, doctors aren't happy to treat elderly folks like me. I'm good at pushing though. I'm confused about getting help from a nephrologist though. We'll see what happens. I surely do appreciate your response.

We are her to help each other.

I'm in SPMS and they r reluctant to prescribe DMT, but r pushing pulse steroids which seem to help me and have shown some benefit in SPMS. I have neuro appt in 2 weeks and will discuss Ocrevus further with them because while the steroids have given me great improvements (2 separate 3 day infusions this yr) they don't get me back to baseline and my progression is inching downhill.

Good luck to u!

Ikeeptrying
Ikeeptrying
in reply to erash

Hi erash, thank you for your reply. It sounds promising and I'll for sure ask this MS specialist about it. I've not heard of pulse steroids before. Maybe that would be an effective treatment. Where are you located? It's discouraging to me that none of my neuros have mentioned pulse steroids as a treatment. Maybe because I'm in a big HMO in California. One did say if my latest MRI shows new brain activity he'll think about prescribing Ocrevus.

This is such a wonderful site. I now have some information to take in to my appointment.

Good luck to us both! Please keep us informed about your appointment.

Marilyn

erash
erash
in reply to Ikeeptrying

I’m in Florida. Pulse steroids have mixed reviews (although recent research is more promising than it has been for spms) and my neuro didn’t suggest it until I was pushing for ocrevus and I still want a good rationale for whatever course we decide on.

Ikeeptrying
Ikeeptrying
in reply to erash

Good for you for wanting a good rationale. I feel the same way. Please let us know what you decide to do. You're in Florida. Gorgeous state. Pitiful California's on fire.

Keep us informed whatever you decide.

erash
erash
in reply to Ikeeptrying

Love calif ❤️

Ikeeptrying
Ikeeptrying
in reply to erash

Me too!

I don’t know much about pulse steroids but I do know that steroids are not good when you have Osteoporosis It dose make the bones more brittle. I know this because I have osteoporosis and I was told this bone bone density doctor and I was told that I have brittle bones just beware of this.

erash
erash
in reply to ssdw1958

True! Pulse steroids is only 4xyr but still risks

I have osteopenia so this is bad news for me. When you get to be my age you have a collection of health problems which makes it hard to treat. Thanks for the heads up about osteopenia, I'll make sure to mention it to the MS neuro.

Good Luck with your MS specialist! I find it helpful when I have important

meetings to bring a pen and small notebook to take notes. Never be ashamed if you

have to have them repeat information. Keep us posted on how the meeting goes.

Leslie

Good advice! I'm also going armed with a list of questions. Thank you so much for your reply. I feel like I have a lot of new friends here.

@Ikeeptrying, I'm several years older than you and have had SPMS, diagnosed in 1980. It's been a very slow decline over the years but definitely a decline. Some neuros are willing to prescribe the disease-modifying treatments for people like me, and I took Avonex for 3 years, then Copaxone for nearly 3 years. Now I understand that Rituxan and Ocrevus are being prescribed for SPMS sometimes, as well as Tysabri, even though strictly speaking they aren't meant for SPMS. The idea seems to be that they just might have some benefit for SPMS. They haven't been thoroughly tested for SPMS---or in older people, or in people with long-standing MS--and that is one reason why a drug's instructions state that it's for RRMS (or in the case of Ocrevus, PPMS as well). But quite a few neuros are willing to go ahead and prescribe them.

I haven't ever been to an MS specialist. But the 4 neuros I've been to since these drugs came along have all been willing to prescribe them for me. I've been turning them down in the last few years because I wasn't persuaded that they were helping.

Hope you'll get some encouraging answers from the MS specialist!

Ikeeptrying
Ikeeptrying
in reply to agate

Did the DMTs work for you? Sometimes drugs will work for a time and then just stop working, at least some of the drugs used for RLS. I guess if you have SPMS you'll always be in a decline. Hate it!

agate
agate
in reply to Ikeeptrying

It's hard to say whether the DMTs did anything for me, and that's one reason doctors hesitate to prescribe them for SPMS. MRI results don't tell the story very well for people with SPMS. We can be doing pretty badly but show no new lesions and no active lesions on the MRI. Some people with SPMS are still having relapses, and for them it would be easier to figure out if a DMD is helping because if they're having fewer relapses while they're taking the DMD, they assume it's helping. However, their MS might have just been taking that course anyway, and so they can't really know. The whole thing is a gamble!

Hi. I just came across your name and story. I was with the same neurologist for 12 years. I was diagnosed at age 57 in 2005 and now am 70.Like you my symptoms have been minimal. I have taken Copaxone since a little bit past diagnosis. Your story is a little worrisome. I recently read an article that it can be possible to come off meds after 70 as the disease doesn't progress for many often after that age. Everyone is different, though, so your story is a bit scary as I do worry that maybe my MS could progress.

What I want to tell you is that I was referred to a specialist after all these years. My neurologist had not recommended an MRI since 11 years ago because I was doing so well; he felt the medication was working. Then he finally decided I should have one this year and the results are iffy but he sent me to a specialist to check it out. I will continue with the specialist and I do feel I should have gone to a ms specialist a long time ago. I just had a different feeling when I went there and although I may not have needed a lot of MRIs over the years, it would have been a better idea to be able to track if changes were taking place. I am not sure after all the blogs I've read on MS boards that all neurologists are up on MS and their have been new research and new drugs. I still think there is a lot yet to be learned and a lot still unknown.

So, Ikeeptrying, I am glad you will see a specialist now. I'm surprised you were not given medications at least over the past 20 years.Now that there are these two meds supposedly available for SPMS and I hope you are eligible because it is certainly worth the try! Please keep us abreast of your upcoming appointment.

On a side note, I have an adult child went out to CA for a postdoc and who has been seen at Kaiser and diagnosed with another autoimmune disease, and so far it seems they have been good for him, so it is a little surprising that you were "sent on your way" back then but then there wasn't as much known in 1998. As MS knowledge as evolved since then I'm surprised you were not treated in time! Best wishes.

Ikeeptrying
Ikeeptrying
in reply to itasara

I'm resentful of the fact I wasn't ever prescribed any DMDs. I understand that in 1998 (when I was diagnosed) that there weren't any drugs. However what about the 2000s? Really feel like they just forgot about me. My MS specialist said he didn't think any of the DMDs would help me. I liked him and feel he's very up to date on MS treatments. So I'm fine with that. Just makes me tired. Course I'm tired all the time anyway lol.

CalfeeChick
CalfeeChickCommunityAmbassador

Ikeeptrying definitely keep trying, in the meantime, keep researching many of medications available, and take your research to your doctor and ask why they don't prescribe!! I'm 70 and had to undergo Neuropsychological testing in July to help determine if I'm mentally focused, etc to get to have a DMT. There was also concern about Alzheimer's. I did well and will maybe find out next month if I get to try a DMT. There is some concern that DMT's don't help people over 70. My doc said he'd pull allot of strings to get me started, now to get Medicare and my health ins to approve. Best to you!

Sorry if my responses are late, haven't been her in a while.

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