Problems walking and question on new drugs
 

Hi people.

I am posting on behalf of my mother who was diagnosed with MS about 3-4 years ago. It has gotten worse in terms of her shaking a bit, and problems getting to the toilet on time, but the main problem is her walking. She now uses a frame when walking about, and is unbalanced.

She falls over now and again and obviously its very dangerous.

Her legs seem stiff and I can just see she struggles. Its hard to advise her on how to try and help herself so you can imagine how frustrating it is for the rest of the family.

She is currently using LDN after I done some research online as I couldnt find anything else. I know LDN isnt there to help specifically with walking but I thought it may reduce / help any other symptoms. She has never had such "relapses" I hear about with people with MS.

Anyway, my question was basically is there any other drugs she could try that I do not know about? Over here in the UK, doctors that she has been to hadnt even heard of LDN. Anything to help her stability, walking etc... would be greatly appreciated.

Thanks for reading.

Darren.

There is AP-4 (Fampridine - in US not yet FDA approved drug but in Clinical trials in final phases and looks to be approved soon) This medication appears to help SOME in walking. It is available by prescription in US by a doctor and then using a GOOD RELIABLE compounding pharmacy (ask your doctor - your LDN has to be compounded - start with them) I am PPMS- 4-AP did nothing for me which was not unexpected given my type of MS and degree of disability - I'm in a chair) Good luck, keep us updated.

Has she been to the MD? There are many things that can and do help. PT, or occupational therapy can help loosen those muscles. muscle relaxers are a common drug many of us take that have MS. A walker is a good thing for her if she is so unstable. Having someone help her work on muscle tone, and muscle control may help. Since she isnt on one of the Disease modifying drugs (DMDs) like Copaxone, avonex, rebif, or betaseron I am assuming (i hate to assume) that she is not in the RRMS or relapsing remitting MS club. Most MDs will not prescribe this type of drug for PPMS or primary progressive MS and sometimes not for SPMS, which many patients transition from relapsing remitting over to SPMS as a form of disease progression. PPMS is a harder disease to find treatments for.

LDN has shown some fantastic relief for so many. its a shame you cant find it there. Perhaps with the help of an MD you can do mail order thru to the USA. If he writes her a prescription, perhaps she can deal with a mail order pharmacy.

Thank you for being so supportive of your mum. give her a hug from us. :hug:

I've used Baclofen for spasticity and muscle stiffness. You can ask her doctor if it's available where you live.

How long as she been taking LDN? Sometimes you have to take it for a while before you notice any results. I take it and noticed an improvement almost immediately. Keeping a diary of symptoms and daily struggles will help. I did that and after reading back over my early days on LDN versus now I can definitely see a steady improvement. Sometimes it's so gradual that you don't notice it until you look back over the course of several months - then you see the improvement.

Good luck to you and your mother. It's so nice that you're involved with her care and want to help. She's a very fortunate Mom! :)

You're a good son Darren. :) Your Mom is very blessed. :hug:

Many thanks for the quick reponses!

Yeah it really pains me to see my mother like this. All I can do is be there for her although her and my father are out of the country for a few months.

She has been taking LDN for about 6 months I would say.

I did read about Fampridine

kicker: are you saying that this is available in the US via prescription? Sorry a bit confused here!

She has been to a few specialists here in the UK but she hasnt been to a weekly therapist which I think I will suggest when she gets back.

A friend of mine had neck and shoulder problems which got worse over the last few years - he found a private chiropractor from the US based in the UK and she has pretty much cured his problems. He recommneded my mother went to this woman as she said she deals with people with MS. She basically makes sure the spine is aligned correctly. If it is not this causes unbalance and neck / shoulder problems like my friend had. She did go a few times to this woman a few months back and she did say my mothers was not aligned correctly. Thing is its quite expensive to go and my parents are not convinced this will help my mother as her walking is so impaired. Can anyone shed any light on this?

I can give the link to the website which explains her technique in more detail. My friend is adamant that if she kept going weekly we would see an improvement but I am not so sure.

Thanks again.

Welcome, Dalboy..:) What a caring Son you are.

I hope the LDN starts helping your Mother to feel better.:hug:

Yes - available now with prescription and use of compounding pharmacy. No real side effects with it (that I noticed), but did not help either. Did take with food in my stomach. I am PPMS, everyone is different how they do on drugs, but worth a try.

Your mom and I have a few sx's in common. I also never go into any kind of remission. When I fall, I try to figure out what I can do next time to prevent it. But without my rollator (a walker with wheels and a built-in brake), I can fall sideways because my legs are getting stiffer.

I have tried just about every drug out there - LDN, Aminopyridine, chiropractor, acupuncture, accupressure - but none of them seem to affect my slow deterioration. But my descent is slow.

I use a rollator and when it comes to making it to the bathroom, I have learned to be calm and just hope that my pad holds it until I can get to the loo and change it.

I take Baclofen for stiffness. I wish DH would stretch my legs but I am too shy to really ask him to do it every day/night. He does not understand what to do and that is also a problem with asking him.

I would love a prescription for a weekly massage. It sounds like a luxury but for me, it would be a prescription. I have a good place to go, the therapist is a body builder, he knows muscle anatomy. You may look into that considering you are in the UK and your medical is different. My insurance does not cover that.

Being in a powerchair sounds terrible and it is, but I get to bathroom on time now and cats have learned to get out of my way:eek:

Hello Darren and Welcome to NeuroTalk! It's so wonderful hearing from a son who is so concerned and involved in his Mum's condition and care. Of course I'm sorry she has MS, it's a miserable disease. I am now secondary progressive and use a powerchair all the time, like kicker, but remember how terrifying it was to be falling all the time. My neurologist said my balance center was damaged by the MS so if this is the case with your Mum, I don't think a chiropractor would be of help. I'm NOT a physician, just passing on personal information.

I've been on LDN for a few years and although there hasn't been a major improvement in walking, etc., my doctor is convinced it has kept the MS at bay and slowed down progression. Even though you don't see improvement, perhaps it's still helping. If I don't take it for a few days, there's a definite worsening of bladder problems and over-all weakness. It's worth taking a daily pill just for those reasons until something better comes along!!
Please ask away, there are many friendly, helpful people here! Perhaps your Mom would like to join us when she gets home again?!

Wishing you and your family all the best. :)

Many thanks for the kind words Judy.

My mum doesnt seem to let it get to her - she never moans but I guess thats what mums are like!

She does also take a daily water pill and also uses pads (but seems to use them at an alarming rate!) Your right about it could be worse without the LDN though, so she will continue to use it.

When they get back from holiday I will get her to try Baclofen and maybe see a specialist physio.

Thanks for the warm welcome - My mum doesnt know I have posted on here, not that should woud mind. Oh and she wouldnt even know how to turn a PC on! But I will pass on all your kind welcomes and comments - she will really appreciate it!

Hi and welcome,
No words of wisdom just wanted you to know that you aren't alone. Jules

hello and welcome to NT.
how nice that you are posting on behalf of your mum.

i agree that PT might be helpful; to help with balance and leg strengthening.
is her dr aware that she is having so many problems, and is falling?
seems like a good time to reevaluate her situation.

maybe the LDN isn't working.
i'm ppms from rrms and have been on Copaxone for 6 yrs. i'm fairly stable and still walking with aids.

hope to hear more about you and see how your family is doing.

Thanks for the kind words.

Im not sure the last time she went to her doctor, but they should be aware of her problems when walking. I will make sure she goes back to her Dr but they have been pretty much useless so far in helping. A lot of the drugs I have read about online they havent even heard of.