peterfrancis 30/03/18
Last reply 2 weeks ago
Gabapentin and Baclofen are not listed o

Not a rant or a full blown complaint really but, the list of Medications could do with being amended as the Meds I’m on are not listed.

I was Diagnosed with Rapid Secondary Progressive MS in October 2017 after having an MRI Scan which showed several large Lesions near the Cerebral portion of the Brain along with many smaller Lesions on the Brain Stem. All that after paying a visit to the Doctor with concerns about loss of balance and Tremor/Shaking in my left arm.

The thing that really sucks is that my vision is slowly deteriorating too along with my ability to focus and concentrate being practically none existent…. When they said Rapid MS they weren’t kidding, it’s been pretty much none stop, another day another new symptom or an already present symptom gets worse.

Okay so this was a bit of a rant.

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stumbler
2 weeks ago

Hi @peterfrancis and welcome.

That list of medications is a list of the available Disease Modifying Therapies (DMTs) for Multiple Sclerosis. It does not include medications to address specific symptoms of MS, e.g. Gabapentin, Baclofen, etc..

I’m sorry that your particular diagnosis is what it is. Your rant is therefore fully understood.

Given that your diagnosis has only recently been made, would Stem Cell Therapy (HSCT) be an option for you?


peterfrancis
2 weeks ago

As I also suffer from Type 1 Diabetes, have done so from the have of 11, treatments/medication for the MS is somewhat limited from what I understand. The whole Stem Cell Treatment thing was mentioned once very briefly then closed down as soon as I told them I inject insulin 4 times a day.


peterfrancis
2 weeks ago

That’s supposed to be have done so from the “AGE” of 11 not “HAVE” of 11, lol. Typos are now a common thing with MS.


peterfrancis
2 weeks ago

Gabapentin given to me to try and ease the Tremors and shakiness which it has done to some extent but it has possibly made other symptoms worse like I now experience lower back ache and tightness in my thighs and right shoulder/arm.

Baclofen was prescribed to try and relax me and help me sleep…. it hasn’t worked, need a larger dose maybe.


stumbler
2 weeks ago

@peterfrancis , I should imagine that the mention of Diabetes did throw a spanner in the Stem Cell conversation. Diabetes involves a whole other discipline from Neurology.

However, I see that Stem Cells are being looked at as a possible treatment for Diabetes. I wonder how difficult it would be to get the two medical disciplines to work together to address both conditions in one hit. I suppose that is probably asking too much……

I would speak to your MS Nurse about the Gabapentin and Baclofen. There is no drug therapy for Tremors, so I have to question the Gabapentin :-

https://www.mstrust.org.uk/a-z/tremor

Baclofen is a muscle relaxant, so if tight muscles and spasms is the issue, then this would be a potential treatment. But, as you suggest, you have to find the dose that works for you. Just be aware that Baclofen is a double-edged sword. Relaxing the muscles too far may impact walking if your legs are already weak. So, the dosage may need to be a fine balance.

And, don’t worry about typos. I call it Manual Dyslexia – the art of your brain knowing the word and the right spelling, but your hands have other ideas………. 😉

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