Has anyone had a Baclofen pump or info about it?

[StevenSims]

Hi, I saw a neurologist yesterday and said she thinks I should have a Baclofen pump? she's referred me to another neurologist to look into this, I've just googled it and it has frightened the life out of me! I didn't expect it to be needing surgery to place under the skin, it looks very evasive!

I would be very interested to hear if anyone as had one fitted and have they benefited much from it? I'm thinking now it's not for me??

Thanks

Steve

[COwithAMN Administrator AMN EASIER Volunteer]

Hi Steve

I have heard of the Baclofen pump but I have not heard of anyone using it, certainly not in the UK. But the idea of pumps implanted to deliver drugs is not new. In the choir I sing in there's a man who has Parkinson's and he has an implanted pump to deliver his dopamine meds. So I wouldn't be unduly concerned about that aspect. I would want to know what the benefits are over taking pills, and how they can ensure that the dosage is correct (you don't wan to keep returning and be opened up to change the dose!).

Chris

[StevenSims]

Hi Chris, Thanks for your reply, I'll speak to the neurologist more about it but I'm unsure?

Thanks again

Steve

[JohnHalter]

Hi Steve

I would be more scared of the Baclofin than the pump. We have a neurological disease which slows down our neurological response and your doctor wants to put you on a neural blocker that will make the problem worse. This pill does not have a brain to know to only block the signals you want blocked and it will affect areas that you don’t want blocked also. You will tell yourself it is the illness progressing but it will be the baclofen. I don’t know if you are walking but high doses of baclofen will block signals to your legs and make this a lot harder. Many I know take it to help them sleep because of restless leg problems and again I feel this is very bad idea. It will cause many other problems, please look up side effects of Baclofin before you decide. I truly believe it is the worst drug a AMN guy can take who wants to try to have a more normalized life. My belief is we should not take any prescription that doesn’t cure or treat our illness and Baclofin doesn’t with a long list of bad side effects.

John

[StevenSims in reply to JohnHalter]

Hi John,

Thanks for the info, I think I will give it a miss? the best benefit I have had is from Vitamin D but it is short lived! it works for 2 months and then stops working? I'm thinking of looking at a UVB Lamp but they are quite expensive? Its mad how on 4 separate occasions when I was on holiday in Cyprus all my symptoms are ameliorated after 2 to 3 days and when back in the UK in less than 24 hours they are back? the active form of vitamin D has a half life of up to 15 hours so when in Cyprus where the angle of the sun is steeper giving more UVB and then wears off when I get home? I'm still trying to get to the bottom of it?

Thanks again

Steve

[Hidden in reply to StevenSims]

Steve, I think this might be an explanation for why vitamin d helps your RLS. It seems that under certain conditions our bodies have increased levels of a hormone called hepcidin. Hepcidin is the master regulator of iron. Hepcidin lowers iron in our bloodstream by refusing to allow it to be released from our stores. Vitamin d lowers hepcidin levels thus allowing the iron to once again flow. More iron, means more dopamine which means less RLS - that is my interpretation. Our distant pre-historic ancestors used to have near constant sun exposure. Take one card out of the house of cards and the whole thing falls? And the reason the vitamin d poops out after awhile is probably due to a vicious cycle. The vitamin d decreases hepcidin, which increases iron availability which is then a signal to the body to produce ever more hepcidin. Do you see the viciousness of it? Hepcidin increases in instances of bacterial infection, auto-immune disease, RA, MS and other inflammatory diseases. It's a defense mechanism by our bodies. It is trying to starve out the bacteria and other things that it interprets as attackers by denying them the iron they need to survive. Strange how the body is willing to sacrifice its own well being in order to stave off attackers. I never thought of AMN as an inflammatory disease, however? But it may lead to other conditions that cause the body to ramp up the production of hepcidin?

See below article or google vitamin d and hepcidin.

Also, has anyone heard of clinical trials of MD1003 for AMN?

J Am Soc Nephrol. 2014 Mar;25(3):564-72. doi: 10.1681/ASN.2013040355. Epub 2013 Nov 7.

[StevenSims in reply to Hidden]

Hi, thanks for the reply, very interesting, this trial was spoken about at the last aldlife meeting and it's a drug used for diabetes? And there is a small risk of bladder cancer? Here's a link: ela-asso.com/en/study/clini...

Thanks again

Steve

[Hidden in reply to StevenSims]

Gotta love clinical trials. So the drug lowers sugar in body (eventually lowers insulin?) and that must signal metabolism of fatty acids? Can that translate to diet? Would no sugar, no simple carbs type diet help in any way shape or form? Would a ketogenic diet (which I thought is also good for diabetes) make things worse because of ingestion of so much fat? But ketogenic throws the body into ketosis which means your body is forced to burn fat for fuel?

I'm an IBS, RLS, sufferer, not AMN, but "the knee bone is connected to the shin bone" and you guys have found treatments (vitamin d for RLS) that help others on different sites. Thank you too.

[MissSheryl]

Hi All,

I had an intrathecal pump implant in 2008. We tried bacofen and also many other drugs including a wide variety of narcotics, neuropathic drugs and even a snail toxin at $2000 a pop. A complete failure. Nothing worked and we tried for 2 years. All I have left is an ugly scare and the associated scar tissue. Last year I was diagnosed with end stage renal failure in both kidneys. I am very suspicious that the pump, which leaked, damaged my kidneys. FYI, I also tried a spinal cord stimulator in 2002. Also a complete failure and I think it actually damaged my spinal cord since the pain was worse after the stimulator was removed than before. Based on my experience, stay away from both of these therapies.

Regards,

Sheryl

[StevenSims]

HI, Thanks for your reply, I think I have already made the decision not to have it!

Thanks again and all the best,

Steve

[cldonnelly]

Hi Steve,

I just had the pump implanted on 2/20/13.....so far so good. Today is first post-op visit, I will keep you posted. BTW, diagnosis is X-ALD female carrier = AMN!!!

~ Crystal Donnelly

[StevenSims in reply to cldonnelly]

Hi, I hope all goes well with it! I'd be interested to know how you get on with it.

All the best

Steve

[ggallsup]

Hi Steve. I had a baclofen pump placed in January. Best decision I've made! I went from being super stiff to being able to walk almost normal. My stiffness is still there, but overall there is about a 60% improvement. The surgery wasn't bad, the only thing was a spinal headache that lasted for about 5 days. I find it better than oral baclofen, I don't have any side effects like I did on orally. Also my neurologist has another patient with AMN who also got the pump and it changed his life.