New here with P.A. and Subacute Combined Degeneration

[108181]

Hi all, Thanks for this group. I have had severe digestive issues for 10 years since getting food poisoning and developing SIBO (small intestinal bacteria overgrowth). Apparently my B12 was not being absorbed due to the antibody being produced which stops the intrinsic factor using the B12. I often asked for B12, but my levels in my blood test high. Log story short, over the past 2 years no neurologist or doctor have been able to explain my loss of use of legs from waist down, loss of balance, proprioception, severe head and neck pain, hands now getting numb, etc. Finally diagnosed with p..a. and the SCD. Has anyone else had these issues?? Could use a few fellow sufferers.

I have been to 9 neurologist, had 20 MRIs and many hideous tests. On my way to Mayo Clinic in Rochester ,MN. I am from Florida.

Now seeing a hematologist who is just as puzzled as everyone else. Apparently I have a lot of degeneration in my neck as well as holes or lesions or syrinxes in my spinal cord. A surgeon says he can relieve some of the pain with surgery but cannot take away the damage to the spinal cord.

Any comments or suggestions would be welcome. I still love life and the beauty around us. I just don't want the disease to progress any more as the end result is suffocation. Yikes.

Thanks for listening,

Susan in FL

[floraldaisy]

Hi Susan I am very sorry to hear all this. I am afraid of getting SABE but my B12 is 1100. I hope that protects me. I too have peripheral neuropathy but the cause is not really known.

I am unsure what the factor is called that prevented you from absorbing B12 but have you ever had any B12 injections at all. Thanks for sharing this.

[108181 in reply to floraldaisy]

Yes, I do B12 3x/week right now and was even doing it every day for a while. It helped a lot at first but now the symptoms are returning, quite strong.

[clivealive Forum Support]

Hi 10101885 join the Pernicious Anaemia Society and speak with Mr Martyn Hooper who I believe has some experience with Subacute Combined Degeneration of the Spinal Cord and he may be able to give you some advice.

To join costs £20.00 for a year's membership.

The Pernicious Anaemia Society

Level 4, Brackla House

Brackla Street, Bridgend

CF31 1BZ U.K.

Tue-Wed-Thu-Sat 8am-12noon

[e-mail]

[phone]

[108181 in reply to clivealive]

Thank you for this information, however I am in the US. I will get his book though.

[clivealive Forum Support in reply to 108181]

You may need to get your Folate level checked as this is essential to process the B12.

Are you on cyanocobamalin? I have been on it for 45 years (despite being in the U.K.) and I'm still "clivealive" at 75.

[108181 in reply to clivealive]

Yes Clivealive, I have had the Folate and other necessary things checked to determine what is going on. So far the Folate is good.

I have been doing daily or 3x per week injections which helped a great deal in the beginning, but now all symptoms have come back, even stronger.

[Sleepybunny]

Hi,

There are two PAS (Pernicious Anaemia Society) support groups in USA.

pernicious-anaemia-society....

B12 books

Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper.

Book "Could It Be B12" by Sally Pacholok and JJ.Stuart

B12 websites

PAS

pernicious-anaemia-society....

B12 Deficiency Info

b12deficiency.info/

B12 Awareness (USA website)

b12awareness.org/

SACDSC

There is an article about sub acute combined degeneration of the spinal cord in library section on PAS website available to members.

pernicious-anaemia-society....

I am curious to know whether or not you are receiving B12 injections at the moment. I have heard of people getting B12 infusions.

I am not a medic just a person who has struggled to get a diagnosis.

[108181 in reply to Sleepybunny]

Thank you for this very helpful info!! I was couldn't find the US p.a. info but now you have provided it. I will dive into this.

Yes many B12 shots, often daily, which are no longer working. But, I did not know that one could get infusions. Very helpful. Thank u!!

[Gambit62 Administrator]

on B12 - what exactly does 'high mean' for the serum B12 result ? does that mean in normal range or is it above the normal range.

Serum B12 isn't a good guide to what is happening at the cell level with B12.

If your levels are very high in the range then has anyone tested your MMA and homocysteine levels to see if they are elevated, pointing to the possibility that you have a functional B12 deficiency?

If high means that your results are in the normal range - but somewhere below 500 then that's the grey range where the test is shwoing your result as a false normal because some people just need levels higher than that in their blood but the ranges are based on averages.

[108181 in reply to Gambit62]

Thanks for your reply! My B12 levels are now above 2000. And always tested at 6-700 previously.

Yes I was tested for those things and I believe that is how the neurologist determined that I make the antibody that stops the intrinsic factor from absorbing the B12.

[Gambit62 Administrator in reply to 108181]

neither of the tests actually looks at or has anything to do with identifying intrinsic factor - which would affect absorption in the gut.

Sounds like what is actually being described is a functional B12 deficiency and your body is creating antibodies to transcobalamin 2 which is the protein-bound form of B12 that is able to pass out of blood and into cells where it can be used. As it can't get out of your blood the levels seem to be building up in your blood.

I presume that you aren't actually receiving any treatment for B12 deficiency - ie B12 shots - not clear from the post.

One treatment that does seem to work is actually treatment with high levels of B12 but it does sound as if the damage has been going on too long and some of it is now going to be permanent.

I don't have access to the actual article (behind a pay wall) but this abstract might be useful.

ndcn.ox.ac.uk/publications/...

[108181 in reply to Gambit62]

Yes,Gambit62. I have been supplementing with B12 injections for about 6 months. At first they seemed to make a big difference but now the symptoms are getting much worse again Even with daily or 3x/week injections. This is why I am going to theMayo Clinic in Rochester,MN.Just waiting to get in.

[Gambit62 Administrator in reply to 108181]

possible that you may now need more frequently than loading doses ... though would be good to get checked out that there isn't something else going on.

The usual regime with loading shots is to continue until symptoms stop improving so another possibility would be stopping the injections for a while (as things have stopped improving) to see what that does.

[108181 in reply to Gambit62]

Thanks Gambit62, I hear you about stopping but am kind of afraid to, as when I did titrate down a few months ago, that is when everything started coming back again. So, that is why I stay on the 3x/week injection. Most doctors tell me that you cannot take too much of B12. It just comes out in the urine.

The latest leanings are that there are more than one thing going on, which doesn't surprise me. I would just like to know what it is. I am hoping Mayo Clinic can solve it.

Thank you so much for you suggestions and concern.

Susan D. in FL

[rvm1212]

Hi,

Have you been tested for copper? Copper deficiency can cause a mielopathy identical to b12 deficiency. Both deficiencies can present together. I have to go to work now, but I´ll post later some articles about copper deficiency and Subacuted combined degeneration. Sorry for my english, it´s not my first language

[108181 in reply to rvm1212]

rvm1212 -- Great suggestion!! Although I have been tested for the copper deficiency and my copper levels are fine. I wonder if it is the same situation as I have with the B12, as my B12 levels are off the chart (over 2000 now!) but I still don't utilize the B12 due to the antibody that my immune system produces to block the intrinsic factor from absorbing the B12. Whew! What a situation!

And, unfortunately my symptoms are still progressing. BUT, I would really appreciate any articles you might send to me -- if it is easier to send them directly you can use my email address which is [e-mail]. And I thank you.

Btw, your English is perfect!

Susan D in FL

[rvm1212]

Hi Susan!

I´m sorry your symptoms are progressing and I hope you find out soon what the problem is.

Here are some articles:

ajnr.org/content/27/10/2112...

ncbi.nlm.nih.gov/pubmed/152...

jamanetwork.com/journals/ja...

spectracell.com/media/uploa...

I think I do have some more but I cannot find them right now. If I manage to find them I will mail them to you.

If the links don´t work by clicking on them just copy and paste.

Best wishes and please let us know how your visit you Mayo Clinic goes.

[108181 in reply to rvm1212]

Dear rvm1212 I can't thank you enough for these links! I have not seen some of this info before. I really appreciate it.

Interestingly, I have researched the copper deficiency before with great interest as my symptoms are so similar. I did get blood tests for copper and it tests fine. BUT, my B12 has always tested fine as well, since my problem is that I produce the antibody that blocks the intrinsic factor from working, so I am not utilizing the B12 in my blood. Maybe it is the same situation with the copper?? Don't know but am seeing my internist on Wednesday and will look into this further.

Hopefully I will get an appointment with Mayo. Although I don't look forward to going from sunny beach weather to freezing cold...

Thanks again for your help!

Susan D.in FL