HELP & ADVICE

[MS JULIE]

Good afternoon everyone. 

New to this forum,  have RRMS since 2004. By and large up and tilll 2016, my symptoms were relatively mild and I went mild so if I ignored it,  I didn't really have it.

From 2016 , went from 2 legs, 2 arms walking with a stick to only right arm and leg working and in wheelchair . I have been taking 150mg Pregabalin for RLS, twitchy legs and feet on fire especially at night in bed for 10 years now. And this medicine controlled theses symptoms very well until approximately 6 months ago.  Having no joy upon speaking to Neuro, who basically said there are no other options medicine wise for these symptoms,  ( even after 10 years) keep on taking the pills and see you in 6 months 🙈🤔🙈

 

So took it upon myself and weaned off Pregabalin.  

And on Thursday 5th May I have Neuro appointment (Different) so I would like to go armed with as many suggestions/questions as possible.  Would be grateful if anyone can help.  J.

[Stumbler]

Hi @MS JULIE  and welcome to the Forum. It's been awfully quiet in here for ages, but we try and acknowledge and answer all posts.

 

The first question I would seek to answer is what type of MS do I have? Relapsing/Remitting MS ( RRMS) has way more options than the Progressive variants, Primary Progressive ( PPMS) and Secondary Progressive ( SPMS). This exact diagnosis will depend on your recent medical history, e.g. relapses, stc.. A new MRI scan may be requested for an up to date view.

 

Then i's a case of treatments. I would categorise treatments into specific MS treatments, i,e, Disease Modifying Therapies ( DMTs) and symptom management treatments.

 

Any discussion on a DMT will be guided by your type of MS and its activity.

 

As for symptom management, make a list of your main symptoms, as you have specified above, Discuss these symptoms with a view to discuss treatment option. In my opinion, Pregabalin is my preferred option over the other main option, Gabapentin. These don't cure the symptoms, but they do take the edge off and make the symptoms bearable. But see what the Neuro says.

 

My usual advice for living with MS is to live healthily, eat healthily, exercise moderately and avoid stress.

 

I hope this helps.

 

[Marina]

Hi Julie and welcome from me too.

 

Is Pregabalin the only med you’ve ever been given?

 

If you’re wondering about meds for neuropathic pain, like for your feet on fire, things like Gabapentin and Pregabalin tend to be what they offer you first and usually work well for most people. Amitriptyline (an antidepressant) is another med commonly given.

 

I can’t take either Gabapentin, Pregabalin or Amitriptyline due to side effects. I get feet on fire too, and things like inner vibrations. For me personally, I’ve found Tegretol (Carbamazepine), which is normally given for Trigeminal Neuralgia, can help the feet and vibrations.

 

Some people find Clonazepam can help a bit, although it’s best taken at night as it can make you sleepy.

 

As always with all meds, what works for one person might not work for another.

 

Maybe these pages might help a bit?

 

How is MS treated? | MS Trust

MSTRUST.ORG.UK

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Treatment for MS may include medication, therapies, such as physiotherapy, and self-management techniques. Some people explore the use of complementary or alternative medicines...

 

Treatment finder | MS Trust

MSTRUST.ORG.UK

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The symptoms of multiple sclerosis can be managed by medication, input from therapists and/or the development of self-management strategies.