Worsening dementia

[Bonnielouise]

Hi
I'm concerned about my sister. 63. With an ms diagnosis made by family doc 15 years ago. She is exhibiting bizarre behavior the past 3 weeks. Hallucinating visually, disjointed conversations, falling a lot. She is being cared for by her retired husband and has been functioning fairly well up til now. He took her to a specialist from Denver who flew into a city 100 miles from their home( they live in a small community) about 3 weeks ago. I believe she has gotten worse since then. He does not have a follow up appt with her until the end of April. Her blood work came back with only vita d low and b12 high. I have not found any info that talks about these severe mental issues with ms. I would appreciate any feed back. I feel like I've lost my sister

[Howie]

I have no advice for you, but someone may. My mom had Alzheimer's, so I know how you feel to see a loved one start slipping. I wish the very best for you both.

[agate]

Hi Bonnielouise, and welcome to this forum--

It must be very sad for you to watch your sister going through this.

Frequent falls are common in MS but the disjointed speech and visual hallucinations are much less common. It's possible that something else is going on with your sister--an infection, maybe, or some other disorder that hasn't been detected yet. Bloodwork doesn't always cover all the bases.

I assume that the doctor has checked into any medicines she's taking because some of them can trigger side effects--or interactions between medicines can do that too.

It sounds as if she's been getting worse since she saw the specialist. If so, maybe your brother-in-law could give the doctor a call and ask to move the appointment date up so she could be seen sooner?

Often doctors' offices are willing to do that, or at least put you on a list of people who will be called when an appointment slot becomes available because someone cancelled.

You don't say how low the vitamin D level was but there's even some evidence that low vitamin D can cause problems in persons with MS. Maybe the fix for this will be simple, like boosting the vitamin D intake. I hope so!

[Lazarus]

These symptoms are frightening but...

When an Ms person has an infection, when an Ms person gets overheated or overworked, when even the smallest thing goes awry--then the body's reaction can be severe out of all proportion to the actual problem. This has been my experience over the decades I have been fighting.
And finding out what is going on can take a while...I hope your sister's path becomes clearer.

[Bonnielouise]

Thank you all for your replies. I feel too like something else is going on. Vita d was 19 and her husband put her on a supplement. She has been having a lot of dental work and ongoing infection with that. I am also concerned about b12 level at 1386. I have MHTFR which is inability to absorb b12 and this is hereditary. Her husband just wants to wait for doc appt and is looking at moving her into a facility for dementia the first of May. I feel helpless.

[agate]

Thank you all for your replies. I feel too like something else is going on. Vita d was 19 and her husband put her on a supplement. She has been having a lot of dental work and ongoing infection with that. I am also concerned about b12 level at 1386. I have MHTFR which is inability to absorb b12 and this is hereditary. Her husband just wants to wait for doc appt and is looking at moving her into a facility for dementia the first of May. I feel helpless.

Echoing what Linda just said--that infection you mentioned could be the culprit. Every infection I've had has made MS symptoms act up in a big way, and sometimes it was a long time before they calmed down. New symptoms can show up during an infection too.

I hope her husband can wait until the infection gets under control before making any major changes. Getting over an infection can take time and more time, unfortunately.

[stillstANNding]

I'd also look at her meds- the actual bottles- to make sure she isn't under or over dosing. Make sure there isn't something that was recently added or stopped.

Is your sister aware of her behavior? Is she concerned.

I would also be concerned about the B12 level. Can you call the office on your sister's behalf?

Best to you,
ANN

[Bonnielouise]

Thanks

Again thank you. I live 600 miles away and my brother in law did not feel my going there would be helpful. So I am in the dark about meds and if infection is any better, it was helpful to know how infection can exacerbate her symptoms. I would love to speak with her doc and will hav to get permission from her husband I guess. I'm not sure she is aware any longer of her confusion. Has anyone experienced this when there is an inability to absorb b12?

[stillstANNding]

Bonnie,

B12 is excreted in urine. If her level is that high (high normal is in the 900's) then she is getting a massive dose and/or her kidneys are not excreting it.

Best to you and your sister,
ANN

[Bonnielouise]

Meds list

Back again with list of medications my sister is on--adderall, Pravachol, aldactazide, amitriptyline, baclophen, Prozac,gabapentin. I'm concerned because I don't see any drugs from the ms med list. Any thoughts? Thanks!

[Howie]

I've had MS for 15 years, and have never taken any MS meds. That was my choice. But I take 5 meds for other things.

I would want her doctor to explain each med she is taking, and what it does, and can there be any bad interactions between them.

You are a good sister. I have one too, and feel blessed.

[agate]

There could be a number of reasons why she's not on one of the MS meds. I'm not on one though I did try a couple of them in the past. It could have been her choice, possibly because the side effects were severe, or maybe her doctor decided that an MS drug wouldn't be appropriate for some reason.

At least two of the drugs you listed are often prescribed for MS spasticity and pain (Baclofen and gabapentin).

I agree that she's lucky to have you for a sister.

[Earth Mother 2 Angels]

((((((Bonnielouise)))))) ~

Welcome!

I don’t have MS, but I’ve spent 45 years researching drugs for my children, family and friends. I’ve discovered that symptoms are often drug-related, either as side effects or interaction between drugs.

Following is the drug information for the drugs your sister is taking. I think there is a reasonable possibility that your sister’s symptoms could be drug-related. I think it is worth discussing these drugs/side effects/interactions with your brother-in-law and that he should discuss them with any and all of her doctors. He can easily print out all of the information and point out his concerns to the doctors.


Pravastatin (for heart)

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Adderal (for ADHD)

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Prozac (for depression)

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Amiltriptoline (for depression)

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Baclofen (for muscle spasms)

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Gabapentin (for seizures)

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Aldactazide (diuretic)

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How is your sister's potassium? Could she have a UTI? That can cause dementia-like symptoms.

I’m not a doctor, of course, but from my experience, I feel it is worth exploring these drugs as the potential culprit for your sister’s symptoms.

I also agree that oral infections can cause systemic issues, and proper treatment of oral infections is critical.

And I agree, you’re a terrific sister.

Love & Light,

Rose

[Gary]

The worst drug I have ever been on has to be Gabapentin. I had every Sx of dementia in addition to hallucinations and major paranoia. Not a time of my life I would want to repeat. My PCP has said that a lot of his patients that he has taken off it have done better

[Frog42]

The worst drug I have ever been on has to be Gabapentin.

Thank goodness it doesn't do that to me! I take that every night and don't have a problem with it. Everyone is different. Unfortunately there are no easy answers.