Looking for someone else with Subacute Combined Degeneration

Hi all, I have posted previously but have not asked if anyone else has my particular problem. The Subacute Combined Degeneration stems from the damage from P.A. and not absorbing B12 in my gut even thought my B12 serum levels are at 2000. Neurologists say I need to keep my system flooded with B12 as I do not absorb it in my gut and I have a lot of numbness in legs, feet, hands, etc., loss of balance and proprioception, severe neck and headaches from the damage to my cervical spinal cord from the B12 not being absorbed. Does anyone else have this situation??? It sure would be comforting to find someone else who can relate. Anybody??

Thanks,

Susan in Fl., USA

16 Replies

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  • The founder of our society , Martin Hooper, had that problem . I have read in his book how he is injected very regularly with Methylcobalamin , not the usual Hydroxocobamalin , or in the USA I believe Cynocobamalin is commonly used . Has your Neurologist suggested this ? I'm sure you will get a response from someone with your problem . Very best wishes to you .

  • Thank you for your reply! I have tried to get the Methylcobalamin but have not had much luck. I use it sublingually but probably to no avail as my small intestine does not absorb the B12. I will look more intensely for it. My neurologist said he is not sure if it will make a difference but I would like to try it.

    Many thanks!

  • I know that it is obtainable in the US , because I got some from there when I first got PA , but I can't remember the name of the pharmacy . It was made to order and was horribly expensive . It can be obtained in powdered form from UK at "Oxford Biosciences " and has to be rehydrated with saline .

    A pharmacy in Munich Germany called Arnika supplies it in ampoules . Google "Arnika Apotheke Manufaktur" You can order over the telephone in English . They are an excellent firm .

    Of course what I don't know is the rules about importing such a vitamin in ampoules into the USA.

    All the very best in your quest to regain your health .

  • Wedgewood -- Many thanks for this info! I actually did get referred the other day to a website in the US that sells it. OMG it is really expensive but I will try Arnika as per your suggestion!

    Thanks for your support.

  • I have these symptoms and assumed it was sub acute degeneration of the spinal cord. The neurologist said there isn't any evidence in the MRI or her examination of it. However, she said my symptoms were from b12 deficiency and recommended to my GP that my b12 injections be done more frequently. A result of sorts!

    I'm just wondering if you were diagnosed with this based on an MRI or examination or because of your symptoms? I don't know if evidence in an MRI only shows a long time after experiencing symptoms or early on.

  • Hi LtAngua52,

    Yes my MRI's (I have had 20 in the last two years!! Mostly brain and cervical spine) show obvious "holes" or lesions or "vacant spaces" in my cervical spinal cord. Saw 9 different neurologists at several well-known health centers in Fl. Got diagnosed with many horrible diseases until someone (a young woman resident) at a big cancer center realized what was going on. They keep redoing them to see if there is a change over time. The B12 injections have helped but only to a point. Still compromised in legs, feet and hands with many symptoms but p.t. and exercise help to give me more strength and balance.

    Thanks for your support. Hope you continue getting better.

  • Hello Susan,

    I could relate to what you are going through. Am suffering from all the symptoms that you have mentioned here. My B12 level has been 123, now am on weekly injections for the past 6 months. Though there are few improvements, but majority of the issues like severe tiredness, body aches lack of energy, back pain all these still persists.

    My doctor also told me that am suffering from Subacute degeneration.

    I understood that people who were deficient for long will take more time to recover.

    Are you still getting injections.

    Best wishes

    mahesh

  • Dear Mahesh,

    So sorry you have these problems. Yes, we do the cyanacobalimin injections 3x per week. I don't know if it is helping any more but I am afraid to stop doing them.

    I no longer believe that I will be able to recover but I don't want it to get worse so I am trying to do all the right things, including an autoimmune diet which is basically a paleo diet. I think protein is important for me and I eat very healthy now.

    Good luck, and thanks for your reply.

  • Hi Susan in Florida. I have every symptom of yours except neck pain and severe headaches, plus I have two fractures of spine.

    All I can do about it is keep my levels of B12 high and take folic acid since my GP's don't want to know, although everything shows in blood tests, CT scans and MRI's. I do this privately.

  • Hi beginner1

    So sorry you are going through all of this. Have you tried eating an autoimmune/paleo diet?? Dr. Amy Meyers has a good book with many recipes that are helpful and not difficult. They say the diet makes a difference. I think it helps.

    I am sort of learning to live with this -- it isn't fun.

    Good luck!

  • I became acutely ill in my twenties with the same symptoms you describe, but I was fobbed off with a diagnosis of "stress" due to overwork and life events. No scans or referrals. I'd also had a head injury which was ignored. So on the plus side, you have a diagnosis and are being taken seriously. And you have this group!

    With complete rest and supplements (so I must have been able to absorb SOME B12) over the next couple of years I had some gradual improvement, but I still had chronic pain with acute flares, weakness and exhaustion. Energy levels far below my age. I studied the Alexander Technique which helps with proprioception, balance, and neck and head problems, and learnt to manage my low energy levels that way. I tried several therapies, and practised Tai Chi which is also good for balance and proprioception without being too strenuous. I have led a more normal life than I ever expected to, and now have B12 injections as I became ill once again several years ago.

    So you can improve, especially with support and with the right medical help, and you can learn to manage ongoing symptoms, but yes, it is a big adjustment as life takes a very different course.

  • Dear Frodo,

    Thanks for your reply. It sounds like you have had a rough time. So sorry. But your suggestion of the Alexander Method sounds interesting and I will explore that. I was doing TaiChi but no longer have the balance to do it.

    I just wish there were more to do. I follow a strict autoimmune/paleo diet which I believe is helpful. I do the shots 3x/weeks and exercise for strength and balance. It is frustrating as this whole thing actually stems from a food poisoning 10 years ago that I never have recovered from. My small intestine became to damaged that it stopped absorbing B12. Unknown to me, I was developing p.a. The rest is history,but not a good history.

    You are so right, it is a huge adjustment, but how else to get through it but just to go with the flow....

    Thanks for understanding.

    Susan

  • Hi Susan (in Florida, USA),

    I have a diagnosis of sub-acute combined degeneration of the spinal cord as a result of pernicious anemia. My intrinsic factor antibody test was positive and B12 had previously tested within the gray (lower end) zone flagged in the test results. I'm also a resident of the Sunshine State (Florida, USA) and have had all of your symptoms along with a raft of others. I could tick off almost every box on the PAS checklist at one time. You are definitely not alone! It's been just over two years since mine was identified and the start of B12 treatment. I've posted here previously but not for quite some time.

    You may consider increasing the amount of B12 as well as some other types of it to see if it makes a difference. Although my neurologist said that "B12 is B12" he does acknowledge that some types seem to work better in symptom relief for specific individuals. In my situation I use high dosages of methylcobalamin sublingual tablets daily and it has made an enormous difference. I use 12 - 15 of the 5000 mcg (AKA 5 mg) sublingual tablets daily and my symptoms are now largely gone. I've tried going down to 10 tablets a day (or less) and have a return of lower level symptoms in a matter of a few days. Since you can't overdose and it is water soluble, and I appear to need it, I've maintained this level for about 26 months with the approval of my neurologist.

    Don't forget to listen to your body and try not to physically overdo it as recovery can be slower than our minds would like. It was somewhere between 18 and 24 months on this regime that I experienced "normalcy" again and realized that all of the problems, ailments, fatigue, aches and pains had disappeared. I no longer experience falls, bump the walls and can walk in the dark again - not to mention put on a pair of socks while standing on one leg - a major accomplishment! Other previously treated ailments have now righted themselves and I no longer require antidepressants for mood or anxiety and my cholesterol and blood pressure are "magically" within range for the first time in over a decade without my previously prescribed medications. B12 does affect every system within our bodies and makes an enormous impact on our physical, mental and emotional health. The damage may never truly heal depending upon the severity, but do consider taking higher levels of B12 whether self injections or sublingual tablets or both as it will do no harm and may improve your quality of life.

    Best wishes,

    Yalaha (Brent)

  • Dear Yalaha (Brent)

    I can't tell you how much it means to me that you replied. I have really wanted to just know that there is someone else out there that has gone through this. Thank you so much for your information and support.

    I do get injections of cyanacobalimin 3X a week and have just started taking sublingual methyl drops but only 5 drops per day as directed. I will triple that immediately as you have had such good results. I don't know if tablets would work as I also have the intrinsic factor antibodies as I have had severe damage to my small intestine from food poisoning 10 years ago, which makes me unsure if I would absorb the B12. So I will stick with the sublingual drops.

    It took almost 2 years to get a diagnosis,(as the symptoms worsened) even with many MRI's and tests. My B12 tests normally so no one caught this. We have gone to 9 neurologists - here in Sarasota and also Tampa, and Gainesville Shands. A young woman resident at Moffitt Cancer Center in Tampa diagnosed me, even when 2 neurologists and a neurosurgeon at Moffitt could not. By then the damage was extensive.

    I eat a Paleo diet and am trying to exercise, especially my legs, as much as possible. I have seen some improvement but am far from "normal" and am walking with a cane.

    I am thrilled for you that you have had so much improvement. Had you had the symptoms a long time before you started treatment? Did you use injections? Or just the tablets? Are your hands involved with the numbness and tingling or just legs?

    I appreciate your kindness and am open to any other hints you may have. Thank you so much.

    All best to you,

    Susan

  • Dear Susan,

    It is good to know that you are not alone when going through similar situations! I have previously used sublingual drops / sprays and they were very effective in my case. I don't use them anymore as the liquid isn't always easily portable and I've created a few messes with leaky bottles when working or traveling. I'm not the most graceful creature at times and have had some accidents where the liquid went everywhere but my mouth.

    As far as the sublingual tablets they are really lozenges and dissolve under the tongue and will be absorbed just like the drops or a spray. I felt faster symptom relief from sprays than from the lozenges, but stuck with the lozenges out of convenience. My doctor also recommended the tablets / lozenges and started me on those upon diagnosis. Since I responded so well to the high dosage sublingual lozenges I've not had injections.

    In hindsight the symptoms had been slowly cropping up over a series of years (read: decades) and my GP checked everything out and began adding them to the "you are getting older file." I was 51 at diagnosis and will be 54 this fall. As so many of them were vague and non-specific the symptoms by themselves didn't amount to much until they were neurological in nature. I began having problems not being able to walk down stairs or down hills and would stumble and fall. A trip to San Francisco brought the point home when I couldn't make it down some steps leaving a restaurant. Oddly, going up a flight of stairs or walking on a flat surface wasn't a problem. Then the proprioception problems started and muscle twitching began on my left side. My left arm, shoulder, hand and fingers all twitched and moved on their own accord. It then continued through my left leg and finally my right leg joined the party. Some of the other issues were headaches, migraines, silent migraines, vision problems in my left eye, extreme fatigue, muscle cramps, tingling and numbness in my calves, ankle, feet and hands. There were also gastrointestinal issues and both urinary and fecal incontinence occurring on a regular basis. My neck had spasms that caused my head to jerk around at the most inopportune moments. I could no longer take handwritten notes in meetings as my hands curled inward. It was so severe that I couldn't even write out a check without my hand cramping so badly that I would drop the pen in pain. When I finally gave up and went on leave from work I was barely able to type on a keyboard. The kicker was when I lost my sense of smell and taste over the holidays. I couldn't smell the onion that I was cutting even when I rubbed it on my nose.

    My GP thought it was psychological and referred my to an associate of his - a psychiatrist. He felt I either had a psychological concern or would need to learn to live with Early Onset Parkinson's Disease. The psychiatrist declared me perfectly well adjusted in short order and as he was a trained neurologist knew it was serious and got me in to an expert and coordinated my care. The expert neurologist ruled out the list of very nasty possibilities from lab tests and MRIs (and flagged the possible B12 connection) and referred me to a protégé he had trained at UCLA who was now on staff at Cedars Sinai Medical Center in Beverly Hills, California. (I was a Los Angeles area resident for 30 years.) By the time I was seen by the Cedars Sinai neurologist it was close to a year from the time the first walking down hill and falling problems began and six months from the start of the muscle twitching.

    The overall tiredness and fatigue has taken a long time to sort out from my experience. The muscle twitching, aches and cramping all seemed to go first and the fatigue was one of the last things to disappear. I have a pool and used that for my primary exercise and still do a great deal of stretching. As you know it can be hot and humid in Florida so I always take that into consideration as the heat saps my strength and energy very quickly. It was much easier to swim and float than to try to walk or do other forms of exercise in getting back toward normal.

    When my body says "I'm tired" I rest, sleep, take a nap or get more sleep in the evening. I don't even question it anymore. I learned not to push myself to try to get better faster as that seemed many times to set me back in any progress in the following days and weeks. My progress seemed slow at times but then at some point you seem to "wake up" and realize the full extent of the things that were "off" or "wrong" or "hurt" that are now so much better or gone altogether. It took years for the damage to be done and will take time for all of the body's systems to heal as much as possible. I take enough B12 that makes me feel well and have experimented with lower doses and am currently at what works for me. Anything more than my current level of B12 intake makes no other improvement and anything less sees a steady creep of the previous problems popping up. With subacute combined degeneration there is a degree of healing that will probably never take place but a number of the symptoms may be managed as long as your B12 levels are maintained. Try to determine what works best for you to maximize your quality of life. It will take time and be happy for all of the improvements, however small, and remember how far you have come from when none of the doctors could tell you what was wrong, what to do about it and it all seemed so bleak. There isn't anything that is more frightening than a series of learned experts who agree that something is wrong but can't even offer a suggestion as to what is causing it. I still get a silly grin when I'm able to walk down a set of stairs now without falling!

    Feel free to ask me about any other questions you may have and best wishes on your continued recovery!

    Warmest Regards,

    Brent

  • Dear Brent,

    When I read your kind post I cried. It is quite amazing to have someone else understand this strange illness. And you certainly do. Thank you so much.

    I do not have a lot of hope for improvement at this point but my goal is just to keep things from getting worse. The many strange symptoms seem to come and go quite often which is sometimes unsettling but the more I start to accept that this is the "new normal" the easier it is to try to learn to live a different but fulfilling life in the midst of the disabilities.

    I am going to increase my injections to every day for a week to 10 days just to see if it gives me a boost. And I will check out the B12 lozenges. I do get a lot of satisfaction from walking 20-30minutes and am seeing some muscle strength which helps with the balance. I do a lot of physical therapy, acupuncture and cranial sacral therapy which all seem to help, especially with the neck pain and headaches.

    I am reading a book called "How to be Sick" by Bernhard. It is a very helpful and illuminating guide on dealing with chronic illness from a Buddhist point of view. I recommend it.

    I would like very much to be able to keep in touch. Is that possible? My email is pawsnrelax@yahoo.com. As I have mentioned, it is quite comforting to know that there is someone who can totally relate. I am so happy and amazed that you got through it.

    With gratitude,

    Susan

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