Greetings from DE/PA

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Greetings from DE/PA

Postby dave_in_delaware » Mon Apr 13, 2009 8:03 am

Hello everyone. I just joined this site in the hopes of getting some sort of help and support. I don't personally have MS, but my mother does, and she doesn't have computer/internet access, so I'm here "in place" of her. I hope that's OK.

I don't have all the details, as talking about her problems to her own son isn't something she enjoys doing (or does well without tears), but here's a brief history:

Many years ago (10+), my Mom started having pain in her face and jaw area. The pain got progressively worse, and she was diagnosed w/ Trigeminal Neuralgia. After many treatments which included medicine, silicone (?) injections, and eventually a snipping of the nerve, I thought she was finally better and could simply eat, talk, or go outside in the wind without any more pain....

Now her facial pain has significantly subsided, and I'm hoping that problem has been "cured," but now her mobility has significantly been reduced (for the last 3+ years) and she's been diagnosed w/ MS. She has so much trouble walking anywhere, she can only manage the short stair climb to/from her bedroom twice per day, uses a walker to move in-house, and a wheelchair to go anywhere "out" in public, including her job. Yes, she's still working, but I'm not sure how long her employer will "tolerate" things the way they are....

My grandmother is almost finished w/ the process of selling her own house so she can move in with her daughter and take care of her fulltime. My grandmother takes my mom to work and picks her up, and is with her almost 24/7 now, helping her move around the house, cooking, cleaning, etc. My grandmother will be 80 soon, and while she's in awesome physical health, I can see that this is taking a toll on her (and my Mom) mentally and emotionally (and she won't be able to do this forever).

And while my grandmother has told me that I don't need to do anything "drastic" right now and that they're managing OK so far... I have already realized that I'm going to have to do something to get us all closer geographically so I can help out more. We're currently 1.75 hours away in a different state (I'm in northern DE and they're in Lancaster County, PA). This is killing me to see my Mom like this, especially after she spent so much of her life helping others (she's an LPN) in her job, and me with my education. And I've never seen my Grandmother break down into tears before.

My Mom is taking a handful of pills daily, plus an injection. I don't have the details as to what exactly she's on though. She just started the injection a few days ago (which replced a different one that wasn't doing anything). I could get a list of what she's on if that will help....

I'm not sure what else to say right now, other than thank you for this site, and I hope I can use it to help my Mother in some way.
Dave (here for my Mother)
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dave_in_delaware
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Postby jimmylegs » Mon Apr 13, 2009 9:31 am

hi dave welcome to TIMS, you have found a great place to consult with ms patients and the spouses and family members who are here to care for their loved ones with ms.
it would be a very useful starting point, if you can, to have an idea of what your mom has used to treat her various health problems over time, in addition to what she is taking currently.
if you are able, maybe from your grandmother if not your mom herself, to get a good idea of her daily experience of ms, that can help point up solutions too.
welcome again and if you haven't already done so, i'd suggest searching the forums for keywords that seem relevant to your mom's case. if you filter the results by "post" rather than "topic" it's easier to find the keyword hit that you were hoping for by your search.
all kinds of people are here to answer your questions so fire away :)
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Welcome, Dave

Postby lyndacarol » Mon Apr 13, 2009 5:17 pm

Welcome, Dave -- and you are most certainly welcome here at this site! We are a special group of unique individuals, each with our own ideas. You are invited to join right in!

There is MUCH information here and book recommendations to start building your understanding of MS. It will simply take much time and reading!

And at the end, there is no answer yet to MS. But most of us here are hopeful that it will be coming soon. In the meantime, your attitude toward your mother's situation will be most helpful. In my own situation, I find my husband's unconditional love, willingness to help in my search, and, simply, the fact that he is always there for me. I am sure you will do the same for your mother.

Again, welcome, Dave.
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Postby dave_in_delaware » Sat Jun 13, 2009 7:47 am

Thank you for the warm welcomes. I visited w/ my Mom yesterday, and was able to get a partial list of what she has/is taking. Again, she's not "big" on talking about her medication and limitations w/ her son....

She did tell me that her doctor basically said "here's the list of drugs to try, pick one and we'll start from there" which to me sounds insane. Shouldn't a doctor who's treating an MS patient at least have a recommendation? Not let the patient just pick something by name on a list? That sort of upset me.

One med that she used to take is Betaseron. She said there was no change when she was on it, so she stopped it.

Currently, she's taking:

Naltrexone
Dialantin - seizure med?
Tegratol
4aminopyridine
Copaxone injection - started in April

She also takes Vitamin D and Advil daily.

There is probably more things she takes, because her little pill container was FULL, but that's all she told me about.

Is lack of appetite normal with MS, or w/ the drug cocktail? My Mom barely eats anything, and she's down to about 80 pounds soaking wet. It worries me how thin she has gotten.

Thanks for the help everyone. And thank you for this site.
Dave (here for my Mother)
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To Dave

Postby lyndacarol » Sat Jun 13, 2009 1:22 pm

I admire your persistence in trying to help your mother. Her reluctance to discuss her medication and medical problems with you is understandable; none of us wants to burden the people we love.

I agree with your assessment of the doctor's offering of medication. It is the DOCTOR'S responsibility!

Her medications, as you listed, seem reasonable. Many at this website are using Naltrexone; some others are using 4 amino pyridine, also. I think Tegretol is a seizure medication, I am not acquainted with Dilantin. Science today seems to find that supplemental vitamin D is good for everyone. I have tried each of the ABC drugs and found no benefit to any of them (and use none of them at this time) so I understand her feeling about Betaseron. Copaxone has a different mechanism, but many people have developed insupportable side effects so I urge her/you to be vigilant.

You asked if a lack of appetite is normal with MS -- it is with me. 80 pounds is definitely a low weight; but, in my opinion, nutritional status is more important than simply weight. If concerned, the doctor could order a blood test to check for deficiencies. As this website's believer in excess insulin as the initiator of the MS cascade, I think my lack of appetite is the result of this excess insulin. For that reason, I suggest that everyone with MS request a "fasting serum insulin test" (NOT a test for glucose).

Hang in there, Dave. You are doing all you can; you are a blessing to your mother with your love and concern, you are an asset to this website with your willingness to participate and share.
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Postby whyRwehere » Sun Jun 14, 2009 12:05 am

Hi,
Sorry to hear about your mother. Perhaps, once your grandmother moves in, she'll know more about what your mother is taking and you can discuss the medication with her. As for Copaxone, when my husband was taking it, he was very thin, but he put on weight after stopping. I can't write much right now, but I think you need to convince her that you are there to support her, so you just want to know what she is taking to make sure there are no bad interactions, etc. Maybe she thinks you will not approve of the drug choices she made? I'd like to say more, but I have no time...welcome to the site.
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