Steroid infusion for cognitive disfunction?

[Leeaura]

Hey guys....apologize in advance if I've posted in the wrong place.

But, has anyone tried steroid infusions for severe cog disfunction? This isn't the kind that other people will say, "oh yeah, me too"! An example of my disfunction is that by the time I walked off a cruise ship, I could only remember about 10% of the vacation; by the time I go to the bathroom after sex, I can't remember having sex; the other night I had to ask my daughter to tell me my home address!

Can't go on like this much longer. I'm the primary caregiver for my elderly mother. I feel like she should b taking care of me. I've spoken to my Neuro but I'm not sure he understands how severe things r right now.

Thanks for any responses or ideas!

[MSer102]

I've read a lot about cognitive dysfunction and MS and I've never read about steroids being used as a treatment for it.

Steroids are most often used in MS to treat acute inflammatory flares. They aren't used to treat longstanding memory problems from existing damage just like they aren't used to treat longstanding motor or sensory problems. If your memory loss had just started suddenly a few days ago your neuro might consider that it might be caused by an acute flare and might consider treating it. But it sounds like it has been going on for quite a while now so it isn't from a treatable flare.

Even if your neuro understands how severe your memory problems are I think he will probably hesitate to treat you with steroids because steroids just aren't the right medicine for what's troubling you.

You might want to consider trying Aricept if you keep your expectations low. A small study of Aricept with MS patients first looked promising. But after doing a larger second study the researchers found that Aricept and other medicines in the same group don't really help much for MS after all. In spite of that I've read a few things online from people saying that Aricept helped them somewhat at least for a while. It might be worth trying.

I've read that some neurologists have prescribed Namenda but it doesn't seem to be helpful for MS at all. I remember reading that at least one study of it in MS was stopped early because the patients on it actually got worse. So based on that Namenda might not worth trying.

[KatieAgain]

I have cog fog, but not that severe. I have had IVSM for other things but it never helped with cog fog.

I would take those examples that you just wrote in your post to your neuro and tell them something has to be done. If you are forgetting that fast, then how are you remembering to turn off the stove or oven?

I would definitely pursue it further with my neuro.

Good Luck to you.

[22cyclist]

Leeaura: you need to get a neuropsychiatric evaluation. This will tell you where you are right now (baseline) in your cognitive dysfunction. The neuropsychiatric doctor will then tell you exactly where your weakness are and how to make them stronger. There are ways to do this without drugs, and with drugs. Sometimes they use amantidine and Provigil for cognitive failure because MS exhaustion has a lot to do with your memory and function. But all of that will show up on your testing. Your neurologist can order this test. It is extremely helpful. I have taken it and they have helped me with my weak spots. Sometimes by just playing games, as it rewires the brain, sometimes by teaching me new ways to do things, same reason.

I take amantidine and it helps tremendously. I wish you the best of luck. Get some help and things will get better. In MS the brain can rewire itself.

Best of luck to you! Things can get better.

Lisa
Moderation Team

[SNOOPY]

Hi Leeaura,

It would be a good idea to see your neuro. Your cognitive issues are quite extreme and needs to be investigated. It might be MS related but it might not, there are other causes for cognitive problems including medications.

A NeuroPsych evaluation will probably be warranted but will not necessarily tell where the problem lies but it might be helpful in directing you in areas of weakness and how you might improve those areas.

Best wishes...

[Leeaura]

Thanks to everyone that responded.

I have an upcoming appt w my Neuro and will b sure he understands the severity of my symptoms. Hopefully, we'll go from there......

[MSW1963]

Leeaura, I've had 2 neuro psych evaluations in a 4-5yr span, the latest about 8yrs ago.

Understanding my cognitive limitations has been of significant benefit to me, aided my understanding of issues involved, coping ability, etc. I wasn't offered cognitive retraining because the facilities didn't offer those medical services.

My cognitive limitations have exacerbated and remitted back to baseline over the years. Fatigue is another reason I'm also curious about IVS. I may have read about fatigue improvements from IVS patients here. Fatigue and cognitive sx's are related in my experience.

I understand that typically steriods are considered only when there is active inflammation. I've had enhanced lesions on my early MRIs, but MRIs have been stable/unchanged for years.

Also curious if others were rx'ed IVS for acute sx's, without active lesions/inflammation, and experienced remission of sx's. I'm also interested in research on the topic.

Leeaura, I hope you get relief soon and best of luck to you.

[Leeaura]

MSW. thanks for your response.

Wanted to let you know that I've only done IVS one time. It was last summer during a 100 degree heat wave. I asked for a 5-day run to try to help my dyzzyness/nausea.
Nurse told me steroids had never been used for that and she didn't think it would work.

Guess what? It worked beautifully and made me an IVS friend for life. Go ahead and ask for what you want!

[Thinkimjob]

You definitely sound foggy. (Not in your post, mind.)
I forget stuff, but I think I'd remember having sex. (There has been the odd time when I really didn't want to remember too much about it.)
I'd be a bit worried about short term memory loss. Do you remember things later, or is it all just a blank?
If you want to give the IV 'roids a go and see whether it does any good, then why not?

[MSW1963]

Leeaura, had my MS neuro appointment yesterday, discussed IVS. He is adamantly opposed to it in my case at this time.

He conducted IVS studies for sx relief years ago, concluded they are not appropriate treatment for sx's relief. Not in my case at this time

[MSer102]

He conducted IVS studies for sx relief years ago, concluded they are not appropriate treatment for sx's relief.

Thanks for posting this. I think it confirms what my doctors have always told me. We can ask our doctors for a particular treatment but it's our doctors job to NOT let us do something that isn't medically appropriate. Steroids are used to reduce inflammation not for relief of longstanding symptoms that are caused by nerve damage and not inflammation.

Also curious if others were rx'ed IVS for acute sx's, without active lesions/inflammation, and experienced remission of sx's. I'm also interested in research on the topic.

Without even asking anybody I think the answer to this is usually yes because the conventional definition of a flare IS the acute onset of new or worsening symptoms not evidence of active lesions on an MRI.

Not everything shows on an MRI anyway so there might not be MRI evidence even though the signs and symptoms are definite evidence of a flare. A lot of neurologists don't use an MRI to check on every acute worsening of symptoms. My doctors don't always use MRIs to decide whether or not to treat flares. I don't have MRIs for every flare and I get IVSM anyway. So for me it happens all the time that I have acute symptoms, get steroids and get better without an MRI.

So it isn't unusual to have an acute onset of new or worsening symptoms that indicate a flare and have IVSM and get relatively fast resolution - even if the MRI didn't show active lesions or if no MRI was done. If anything I think that's the confirmation that the flare really was an inflammatory flare.

The key to the improvement after ISVM is that the symptoms are new and acute not longstanding.

[SunnyCher]

I'll keep you in my thoughts

The day I realized I had a serious problem is when I called my husband and asked him where we lived. I was driving home from work and nothing looked familiar. NOTHING. I was 40 years old and had lived in our house for 6 years. I had ignored the dizziness, extreme fatigue, shakiness, dropping things, but I couldn't ignore that. What has helped me since then is reducing fatigue and stress. I have been a caregiver for years, and that is much easier said than done. I hope you find something that helps!

[kidkaos2]

In my experience steroids do help with cog fog. I haven't had them prescribed specifically for cog fog, but when I've had steroid treatments for other reasons they ended up helping with the cog fog too. But not long term, just for a couple of weeks.