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Advice needed

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MS08579G
10 Apr 2012 at 12:17AM
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Hi, I have been diagnosed with Ms since 1993 and have had secondary pregressive without remission for 18 months. Since then MS has worsend considerably. I have a superpubic catheter, a peg for feeding and my mobility has worsened. I feel that this has happened all very quickly and am worried about the future.

My neurologist has told me that disease modifying drugs are out of the question but has put me on morphine, Tizanidine, cocodamol, Oramorph, zolpiden, lansoprazole, pregabalin, amitriptyline, buscopan, citalopram, solife nacin and capsaicin cream.

I am worried for the future as my life has changed drastically over the last 18 months. Can anyone suggest what more I can do to help myself and offer advice about the drugs I am taking? Is there anything better out there?

Also...
My pain consultant has also offered lignocaine infusions. Has anyone heard of this? I have tried to research this but haven't found much info.

Since I had the superpubic Cather fitted in November last year I have suffered terrible spasams in my bladder. Drugs haven't helped so now I have been offered Botox injection into the bladder approx 30. This will paralyze the bladder. Has anyone heard of this as again I haven't been able to find much info?

Sorry for this epic but I am new to this and am desperate for help.

WOMBAT
10 Apr 2012 at 12:20PM
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would it be worth trying , LOW DOSE NALTREXONE.  GOOGLE IT . PHIL

lollypop
10 Apr 2012 at 4:46PM
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Thats a lot of drugs phil. I don't know much about LDN but I have heard of people with advanced ms taking it. Have you tried changing your anti spasmodic drugs Its not one drug fits all there might be a better one for you? I have heard of botox helping the bladder. It might be worth a shot. Taking all those strong pain killers will do one thing thats not good and that is making you constipated. Keep on top of that and it might help the catheter as well. its all very close in proximaty. make sure you have enough fluid Are you still having fluids orally or through the peg?

I hope you are ok and pm me if you want to chat.

laura

theorising
10 Apr 2012 at 5:44PM
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Hi I'm sorry to hear you are having such a difficult time and hope iet eases for you soon.

I have found HBOT (oxygen treatment) has helped me. I'm SP and in a wheelchair, and self catheterise.  I have been denied DMDs.

I tried LDN but it didn't help me but it has helped other so that might be worth a try as it might help you. I tried Modafinal for fatigue but I don't think it had much impact on me but some people are helped with this.  I also tried Baclofen for spasms but ended up like a jelly fish so stoped those so I still get spasms (but not too badly presently). I take Vit D and self inject Vit B12 (the latter helps with fatigue) I'm not to sure what Vit D does but I'm taking just in case! I don't have any pain at all I don't feel anything so can't offer any help with that.

Can you get your GP and Neuro to relook at your medication to see if some can be reduced or alteratives given that are more effective for you without some of the side effects you are experiencing.  It might be worth a try.

I hope things ease for you and hope you get some good advice - I'd try anything if I had the option to slow down this and hope you find something to help soon.

With love and ((((HUGS))) Mary

theorising
10 Apr 2012 at 5:44PM
Top

Hi I'm sorry to hear you are having such a difficult time and hope iet eases for you soon.

I have found HBOT (oxygen treatment) has helped me. I'm SP and in a wheelchair, and self catheterise.  I have been denied DMDs.

I tried LDN but it didn't help me but it has helped other so that might be worth a try as it might help you. I tried Modafinal for fatigue but I don't think it had much impact on me but some people are helped with this.  I also tried Baclofen for spasms but ended up like a jelly fish so stoped those so I still get spasms (but not too badly presently). I take Vit D and self inject Vit B12 (the latter helps with fatigue) I'm not to sure what Vit D does but I'm taking just in case! I don't have any pain at all I don't feel anything so can't offer any help with that.

Can you get your GP and Neuro to relook at your medication to see if some can be reduced or alteratives given that are more effective for you without some of the side effects you are experiencing.  It might be worth a try.

I hope things ease for you and hope you get some good advice - I'd try anything if I had the option to slow down this and hope you find something to help soon.

With love and ((((HUGS))) Mary

theorising
10 Apr 2012 at 5:45PM
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Whoops fingers slipped sorry I posted twice!!

MS08579G
10 Apr 2012 at 11:56PM
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Thanks for all your help and support. Is much appreciated.
Sheron

MS08579G
10 Apr 2012 at 11:56PM
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Thanks for all your help and support. Is much appreciated.
Sheron

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