I have sub-acute combined degeneration of the spinal cord all because I didn't receive enough B12, beside B12 is there any other treatment?

[Debbie]

[editfmrt]

This leaflet is helpful but like Debbie I could really do with some advice about a good treatment protocol aimed at doing the best to repair the myelin sheath. So, for example would a series of B12 infusions of methylcobalamin be best - how often how long, what dose. Would it help to include magnesium or zinc. Should you supplement with other forms of B12 injections or other B vitamins like folate in tablet form. In short the best treatment for repair as well as the suggestions for relief already given in this leaflet. There are a few preparations on the Internet claiming to help repair nerve damage for all sorts of neurological conditions and I don't know if they are worth trying.

[editfmrt]

Since my previous post above, I have found this which might be helpful to others:

b12d.org/sites/default/file...

Although this mentions later on in the article about the more accurate Active B12 test and clearly states diagnosis should not just be based on blood test results, it does still go into detail about the levels and what they mean. I think this is a little misleading because it could still make people think they do not have PA or a B12 deficiency or it is only moderate because of the levels quoted. The web site does though mention what needs to change in the diagnosis and treatement:

b12d.org/content/what-needs...

[Debbie in reply to editfmrt]

Hi there, am not sure if you read my reply to Pettals.. if you do you'll understand where I am in all this..

How badly has this affected you?

I bought some 'sitting yoga' dvd's recently, am still waiting on there arrival in the mail as I'm in Australia and I actually found them on amazon in the States. I am hoping some gentle exersise might help with keeping the rest of my body okay.

Any emotional stress or too much exersize (which doesn't have to be much), will have a bad effect on me, I guess it drains the b12 extremely fast.

Have you noticed this? Can you exersise?

Am really interested in what you have to say.

Cheers Deb

[Debbie]

Hi Pettals,

Yes, I have an underactive thyroid too.. I can't walk or stand at all anymore and haven't been able to for nearly two years.

I give myself daily injections, and when I initially began these injections my upper body strength returned, my eye sight improved nearly completely and it has helped my tummy upsets (as long as I don't drink alcohol).. sadly though my hips, lower back and legs especially my feet don't seem to want to work.

I know nerve damage is unlikely to heal, but I do have some movement in my legs and feet.. I don't know if I should try exersising because when I have in the past in most cases it seems to make the weakness in my legs worse.

I take a variety of vitamin supplements, vitamin D, folate, iron, probiotic, and a liver detoxifier.

Any idea's on whether I should exersise would be greatly appreciated, or any advice on alternative treatment.

I wish you better health too. x

[editfmrt]

I've just seen it now Debbie - 7am in the UK. It is truly shocking and my heart goes out to you. You are right - I can see better where you are coming from....

I see also you are a member of the main PAS site and no doubt have read other stories of permanent damage. That site is a mine of information and has been really helpful with my learning about this.

I'm a member of PAS too mainly to help my sister who is bed bound and can just about shuffle from her bed to the toilet a few feet away using a walking frame. We learned from blood test records that our mother had PA which was ignored and went untreated. She too was bed bound and died of stomach cancer. My daughter has just been diagnosed B12 deficient and we are at the beginning of dealing with that and the ignorance of the medical profession. I have low B12 with some symptoms but am good and I'm hoping I've caught it soon enough.

We all have thyroid conditions. I believe my sister is affected by poor management of under active thyroid as well as PA. It is very difficult to distinguish between the symptoms of the two because so many overlap. Therefore, I am helping her with both conditions and trying to get both treatments optimised in the hope of some repair. This has been ongoing for 6 years. I only put the pieces of this massive jigsaw together in the last year since joining the Healthunlocked Thyroid UK community. Many members with thyroid conditions on this site also have B12 issues.

My sister has shown some small improvement since I arranged B12 infusions.

Further improvement has been gained since she started T3 thyroid medication in the last few weeks. She is not so bent over double when she shuffles to the bathroom. Her pain is slightly reduced. I suspect the T3 is having more impact than the B12 treatment.

At long last I have got the medical profession to recognise the thryroid issue but I'm having a devil of a job to get them to help me with B12 because the infusions have raised her levels. They now ignore the B12 saying her levels are too high! Exercise is out of the question as she is just too ill.

That is just a potted history but in summary, I think my sister has two problems both of which are contributing to her symptoms and both need optimal treatment.

I see from one of your posts you have thyroid problems too. I hope you are getting the right treatment for that as I have found it almost impossible to separate the two.

I wish you all the best and encourage you with all my heart to keep seeking the answers.

xx

[sblake7]

My son has SCD with peripheral neuropathy as a result of B-12 deficiency that wasn't diagnosed quickly. He ended up in a wheelchair, and started taking sublingual methylcobalamin megadoses (5,000 mcg daily) along with B complex vitamins including folate (the methyl B-12 works with the folate and other B vitamins to repair nerve damage). Over the course of about 6 months he went from wheelchair to walker to cane. 6 weeks ago he started daily injections of methylcobalamin (1,500 mcg subcutaneously), and the improvement was dramatic-- he rarely uses the cane any more, and is walking almost normally, and able to carry heavy packages. The injections of methyl B-12 also seemed to dramatically improve his mood and abate depression and provide more energy.

We're in the US (I gather most here are from the UK), and we've undertaken this treatment on our own after ineffective diagnosis and treatment by doctors. So-- consider the sublingual methyl B-12 (not the more common cyano B-12 that's in most supplements, since the methyl B-12 is in the active form your body needs to regenerate nerves and myelin sheath). It's widely available online, easy to take, and not very expensive. There's no toxic level of B-12, so no fear of taking too much.

If that doesn't help, consider the B-12 injections (we purchased ours online from Trim Nutrition). Ordinarily I'd say it's best to do this under a doctor's supervision, but our experience with the doctors wasn't great. We settled on the injectable dose after a bit of trial and error with different doses.

Oh-- he's stopped taking the anti-depressants his shrink had him on, and is taking SAM-E along with the B-12, and is doing much better (depression-wise). We believe the B-12 deficiency was the cause of his depression.

Just our experience, YMMV> Good luck!

[Debbie in reply to sblake7]

Hi sblake7,

Thankyou for your encouraging message. I am so happy for you son.. it must be such a huge relief to him and yourself. It is such a shame that we can't be confident with our doctors, and such a huge responsibilty left to you to diagnose and find a treatment!! But well done

I have lots of questions, if you don't mind?

Where did you purchase the sublingual methylcobalamin 5,000 mcg?

How old was your son when you realised his health was deteriorating, and how old is he now?

How long was he in a wheelchair before starting the initial sublingual doses?

I'm in Tasmania, Australia, I am nearly 48 years old and my health first started to deteriorate substantially around December 2008, but I wasn't relying on a wheelchair until December 2010.

Thankyou so much for the information regarding your son.. it is an inspiration.

Kindest regards, Deb

[sblake7 in reply to Debbie]

Hi Debbie-

We purchased Jarrow Methyl B-12 "lozenges" (which can be used sublingually) from iHerb:

iherb.com/Jarrow-Formulas-M...

but I see that they have it at Amazon as well, cheaper:

amazon.com/Jarrow-Formulas-...

Jarrow seems to be a well recommended brand.

Our son was 26 when symptoms started (numbness and tingling in the feet). It got progressively worse until he ended up in the hospital barely able to walk three months later. Diagnosed with peripheral neuropathy, but not diagnosed as due to B-12 deficiency, he was referred to a neurologist who misdiagnosed as CIDP while he continued to get worse.

We figured out it was a B-12 deficiency a couple months later, around the time he needed a wheelchair, and he started the sublingual methyl B-12 then (about 6 months after symptoms started). He started improving shortly thereafter-- that was about 7 months ago. Then the methyl B-12 shots really started helping about 6 weeks ago. So we're about 13 months into this journey.

Good luck to you!

[Thethirtiethday in reply to sblake7]

I know it has been awhile but did your son recover?

[Meblue in reply to sblake7]

How is your son now?

[jaybo]

try injectable methylcobalamin in high dose , thiamine ,nicatonic acid ( b 3 ) r-lipic acid

dr fred kleener and dr mount treated MS with these nutrients google them

oral doesnt work -lyposheric might

i am not a doctor nor medically trained but use these myself in very very high dose

[taffey]

Hi debbie, I am amazed to find someone who also has lasting damage after non diagnosis of vitamin b12 deficiency just like me. I complained to my doc for 2 years about numbness in feet and legs and saw an orthopedic surgeon and neuro surgeon, both of them said I needed to deal with my anxiety so I started alternative therapies to try to sort anxiety. No one ever did I blood test on me and if they had I would not be left with damaged spinal cord..

How does it affect you ? I have walking and balance difficulties and was having regular falls until I started going to aqua aerobics. I can do all sorts of exercise in the water without risking a fall and it has really strengthened the muscles in my legs so now when I trip I can usually save myself rather than falling in a heap!

[SusanLMckinney in reply to taffey]

I was going through this in 2001, not due to any stomach by pass or anything. I think doctors are becoming more aware due to factors like that. It was horrible trying to get the doctors to find out what was going on and when the symptoms became so numerous they started accusing me of needing counseling. I guess I was lucky in some ways. I had a respected bishop who talked to his wife's doctor and asked her to check me out. They told the Dr. I had no history of mental disorders. First full blood test told the tale. I had NO DETECTABLE B12. I believe I would have died shortly of some kind of heart failure. It was causing my heart to do all sorts of crazy things, missing beats, palpating, pounding etc. It messed up everything in my body it seems. Long story, but the shots worked but nerve damage took a long time to heal. I am lucky to have had as good a recovery as I have. My son also has it but we caught it early but he was already having numbness and tingling in his feet, legs, hand, arms. I have noticed many people with this also have hypo thyroid like myself. God Bless