My mother has progressive MS

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jimmylegs
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Post by jimmylegs »

nice pics!

spasticity in the muscles can be helped with magnesium, and muscular pain can be connected with low vitamin d3 (i am not saying low d3 is the only cause of muscular pain though!)

eating plenty of dark dark green leafy vegetables, such as kale, and taking 250 mg magnesium citrate per day (i'd say more but i don't know the bathroom situation - magnesium in higher doses like 750 per day is laxative) could provide some relief.

in addition, taking an epsom salt (magnesium sulfate) bath could help get some magnesium to those spastic muscles through the skin.

actually magnesium is another blood test you could think about ordering. according to research, magnesium levels should be over .90 (i apologize i don't have the units for that right handy but if you are interested i could find out).

HTH,
JL
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Loobie
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Post by Loobie »

Cassandra,

Bravo to you for bringing sunshine into your mother's life. She is obviously just overyjoyed when you are around and your pictures still make me cry! Now I don't know if that's atrophy or spasticity making your mom's legs do that. Most likely it's a combination of both or just the spasticity first and then the atrophy sets in. So I would get a hold of a physical therapist post haste. You don't want to go manipulating and stretching things that don't want to budge unless you're pretty sure of what's going on.

I'm going to be blunt, but not in a callous way, just to speak to the facts you've presented thus far. You said your mom was pretty overweight before all of this. That and the fact with what she's doing now probably means that her musculature was not tip top when this all struck. That's even more of a reason for you to get a physical therapist involved. If she is to straighten those dudes out again, it's going to take a pretty large effort on her part and I'm sure she'll need lots of help.

So my advice is to immediately, if not sooner :D , get a physical therapist involved and follow their recommendations. I know what I would do, but I can't in good faith say "yank your mom's leg straight and hold them there for two hours" since I don't know what I'm talking about! But I would find an expert whose used to dealing with atrophy and spasticity because I would imagine both are involved at this point. Good luck and God bless you, your mother seems to be really loved and that is just huge in all of this.
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Post by Wonderfulworld »

Cassandra lovely photos of your Mums' "good day".

I agree with Loobie. Physical therapist for her asap. In Ireland they are called Physiotherapists.

It would look to me as if your Mums' right side has atrophy from lack of use - the muscles have actaully shrunk. And then extreme spasticity in both her legs might have caused them to pull up like that. It can be reversed to an extent but only with intensive and regular physiotherapy. It can be painful but it's a temporary pain that can be worked through and in the end it might leave your Mum with much greater mobility and flexibility than she currently has. She might need some anti-spasticity medications too.

I hope that helps.
~~~~~~~~~~~~~~~
Concussus Resurgo
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RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Tecfidera, Cymbalta, Baclofen.
EPO, Fish Oils, Vitamin D3 2000 IU, Magnesium, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle, Melatonin.
CassandraM
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Post by CassandraM »

Does anyone have any good suggestions for some small exercises for her legs? since they are stuck they hurt her :(
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jimmylegs
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Post by jimmylegs »

hi cassandra i am not the one to give the best advice on exercises, but i would add potassium to the recommendation too... magnesium and potassium work together... also there could be some good books at your local library with some physio information. the supplements can help things settle down a bit so that the exercises wouldn't hurt as much. for potassium you need a LOT daily, about 4500mg. ask the pharmacist if he has high potency potassium supplements behind the counter. i have seen them as high as 600mg but they are usually only 99mg which you can imagine is not that useful.
hth,
JL
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lyndacarol
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Post by lyndacarol »

CassandraM--Like jimmylegs, I am probably not the best person to offer advice on exercise. I tried physical therapy once for about two months, but saw no benefit.

In your mother's case, I would only recommend GENTLE slow-going because you know she has pain and severe stiffness in her legs. Is there a way for you to get and use a vibrator on her legs to improve even just her blood circulation? Is there a professional massage or physical therapy agency in your town -- someone who could come to the house and give your mother a massage? If your mother has a family physician or internist, it might be useful for you to meet with this person; the doctor (knowing her case) might have good suggestions for you.

JL has good ideas about supplements that may help; also, the library may have useful books about exercise.

It does seem that one should be able to do something to improve your mother's situation with her legs. As with most problems, persistence and asking LOTS of questions should help. I get the feeling, Cassie, that you are very capable and determined to help your mother, if help is possible. Remember, you have friends here who want to help, too.
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lyndacarol
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Post by lyndacarol »

One more idea -- another member here, Sharon, recently posted on the CCSVI forum about the Feldenkrais method:
Feldenkrais can be an excellent movement exercise. Here is a link that explains what the Feldenkrais Movement is about http://www.feldenkrais.com/ The exercises are great brain activators. I have been taking classes off and on for about three years. The exercises are also great for opening up the tight areas in your body structure.
On the link that she gives there is an article about Feldenkrais and working on the hamstrings, which could be a large part of your mother's problem with her legs. Perhaps a book on this method or information from the Internet could offer some suggestions for you.
CassandraM
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Post by CassandraM »

Hey everyone! sorry I haven't updated in a while, ok so here we are

My mom started her Spasticity (spelling?) medication, I forgot the name but her legs are about 1 inch looser! :D She went to the hospital 2 days ago to get her Echo cardiogram to see if she can handle the chemo she will be starting and we haven't gotten the results yet but I'll keep you posted!

We had a nice thanksgiving even though her new meds caused her to fall asleep whilst eating lol, I am going to be going over to her house every other day to cook her gluten free meals and spend time with her.

It's amazing how much closer we are now because of this disease, it really makes me appreciate our time together.

I'll update soon, promise! And thanks so much for the support and advice :D
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Loobie
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Post by Loobie »

Good to hear from you Cassandra. I'll repeat this again, your mom is lucky to have you.
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patientx
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Post by patientx »

I'll 2nd what Lew said. I'd like to have someone like you in my corner.
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Rebecca
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An idea for you

Post by Rebecca »

One of the most hopeful things that I've seen recently for progressive MS was done by a doctor who developed secondary progressive MS. It is a rather long, and sometimes tedious slide show and audio on how this doctor went from her wheel chair to biking five miles to work every day. The presentation is full of ideas on how to overcome MS. Here's a link to this slide show and audio:

http://wildhorse.insinc.com/directms05oct2009/
CassandraM
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Post by CassandraM »

Thank you so much for this presentation, I just watched the whole thing and will tell my grandmother to watch it as well :)
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jimmylegs
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Post by jimmylegs »

i flipped through the presentation to the nutrition stuff and i totally agree with the content. agree, agree, AGREE. i didn't really know about sulfur before, but luckily it's in foods that i try to get in me for a variety of other reasons :) [JL edit: oh wait i don't agree about the stop dairy eggs and gluten thing, but everything else yes]
i did not look at the electrode info in detail but can see how that would be useful in advanced cases of MS.
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CassandraM
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UPDATE

Post by CassandraM »

Hello again everyone,

I am here to bring you all up to speed on my mothers MS.

She is doing very well, we have hired a physical therapist to come once a week and work with her and she so far has been able to part her knees about 5 inches (for those who didn't know, she lost all of the muscle in her legs and they got, for lack of a better term, stuck together). We have a nutritionist come to the house once a month so she is eating more healthy foods, salads once a day and lots of salmon, fruit and veggies.

Her test results show that her heart is strong enough to handle the Chemotherapy so she is going to start her treatment within the next to months, we haven't told her that it is a Chemotherapy drug because we don't want her to be distressed.

She has been having more good days rather than bad so I'm really happy with how things are going!

More updates to come in the next few months :)
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lyndacarol
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Post by lyndacarol »

Cassandra, I am SO glad to read the update on your mother. I am glad to hear of her progress with physical therapy. After watching the therapist perhaps you can even work with your mother a couple additional times per week. If your mother qualifies, maybe Medicare or Medicaid would even cover services like physical therapy.

You must be so pleased with her progress too! Please keep us informed with future updates. You have found a group of friends here at this site who care and are interested.
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