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Neurology  (Expert Forum)
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Conuing Sub-Acute Combined Degeneration of Spinal Cord?
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Conuing Sub-Acute Combined Degeneration of Spinal Cord?

by patches748, Jan 05, 2002 12:00AM
I was diagnosed sub-acute combined degeneration of the spinal cord in February of 1999 and have getting B-12 shots since.  but what ever is wrong with me is slowly progressing.

I startd complaining about burning in my feet in 1996.  In 1997 I was complaining of occasional falling by and exam at VA showed some atrohy of one optic nerve.  But was not tested until  1999 (for MS and that was ruled out)but B-12 level was 294 (they only did B-12 test level).  I had an abnormal visual evoked test, positive Romberg and my EMG showed moderate to severe neuropathy (axonal and sensory-motor damage).  The shots seemed to help at first but problems are continuing.  In eye exam in 2001 I had atrophy in both optic nerves and loss of visual acuity causing constant blurriness in both eyes.  



Now I have a new problem starting with muscle jerking.  I will take a step and the my leg with jerk down which causes me to fall.   My arms do the same thing and this type if jerking occurs when trying to make some kind of movement.  I have also been diagnosed with fibromyalgia.  Plus suffered from two severe whiplashes in 1989 and 1991, and two head injuries (with back of head hitting concrete in 1996 and falling down 11 concrete steps in 1999.  After the two head injuries my migraines increased, have had many more problems with ability to think clearly (including doing my checking account) getting lost, etc.  



Is it possible my B-12 deficiency is not improving with the shots?  Or could something else be going on?  I am desperate for answers as this is pretty scarey to me with this progression.

by CCF-Neuro-M.D.-JT, Jan 05, 2002 12:00AM
Sorry to hear about your symptoms. First, there is an association between the spinal cord problem as well as optic atrophy related to B12 deficiency, so it's possible your symptoms are all from that. Cyanide posioning as well as abnormal metabolism of cyanide can also cause these symptoms (cyanide level can be easily checked in the blood). Your B12 deficiency needs to be fully evaluated with serial followup lab checks. Another lab that they can check is called methylamalonic acid, a biochemical compound in your body that will be high if B12 is not properly metabolized.



Second, your spinal cord also needs to be closely evaluated. I agree, this could be something else. There are diseases that can cause primary spinal cord problems like paralysis in association with optic atrophy of both eyes such as Devic's syndrome, a disease that is similar to MS, but usually does not involve the brain. I would suggest an MRI of the spine.



Finally, the jerks that you describe could be spasms of your limbs due to abnormal spinal cord input. It would be important for a neurologist to take a look at you and see if they are indeed spasms. Medications like baclofen can be of help in that case.



I understand your concern, especially since everything seems to be progressing without any real answers or improvement. What;s important for you now is to find a good neurologist near you to help you determine what's going through a proper diagnostic workup and examination. Or get a second opinion from a major academic or clinical center. I wish you the best of luck.
Member Comments (7)

by patches748, Jan 05, 2002 12:00AM
To: continued
forgot to add that also having much more problems with ability to think, concentrate and work through problems...such as keeping check book caught up correctly, tracking a conversation, etc.  The muscle jerking use to be once in a great while and is now every day.  Vision seems to be getting worse as cannot read signs very far off when driving.  But to me the most outstanding problem is the lack of ability to think clearly or follow conversations, etc.  thanks

by patches748, Jan 05, 2002 12:00AM
To: doctor-continued
I know this must seem trivial but wanted to explain muscle jerking......it is where there is a quick rapid movement or jerk in muscle (not direction I was going with limb).  Also the past week or so have been getting a similar symptom when breathing and a quick (like) hiccup.  Also in the past week have been getting whole body jerks when in bed and trying to go to sleep.  The whole body jerks as I am laying there. This is much different from teh restless leg syndrome I was diagnosed with.

by patches748, Jan 10, 2002 12:00AM
To: doctor
It is very difficult to find a good doctor who will listen at the VA......I had numerous problems which I complained about since as early as 1996 concerning things like burning feet, falling, blurry vision etc.   It is a shame that we can be dismissed as not being credible when we have been diagnosed with a mental disorder......but that is what happened in my case (and sure many others).  I personally cannot afford to go to a private clinic since I am disabled (VA compensation) and they do not take kindly to us going to someone other than them.  I feel I am in the same position here (now) as I was at the Portland VA...that most are going to just treat me as a mental case.  The last doctor who did a recent EMG test here  did not complete the test once he found out I had PTSD plus he was mad because I did not have a copy of the previous test (which is in my records and he just did not want to read through them).  i did see an excellent neurologist at a Wyoming VA who diagnosed me with subacute combined degeneration of the spinal cord once he found my low B12 level, an abnormal visual evoked test, and the EMG studies he did showed a moderate to severe sensory/motor, axonal neuropathy.   ihave been on B12 shots since then but they tend to forget to keep scheduling my B12 shots and after I have gone four weeks or more I start having more problems.   They cannot explain to me why sometimes I have an EMG tests and results show mild problems and other times they show more dramatic results.  I do not drink nor have I ever drank much, plus never gotten into drugs.  When they cannot come up with some answer it must be because I am a "mental case"!!!  Sorry, but not to happy with doctors treating me a certain way.  Mental disorders usually do not have much to do with medical problems and I do have proof that I now have atrophy in both optic nerves (which I did not have before 2001), vision is blurry worse, having muscle jerks during daytime, etc.  Sorry, but just had to post this as know I am not the only one who suffers from being treated like a mental case.  Thanks

by oftenlostoldwoman, Mar 05, 2002 12:00AM
If your B12 level was low enough to require treatment, you might also check into your folate level.  I was on B12 injections for years and also on folate - the doctor told me at that time that low B12 and low folate go together and it can be dangerous to treat for B12 only because folate deficiency anemia can be missed and can be a serious problem with lots of neuro symptoms which continue to progress.  Just a thought - good luck.

by VICKSTER_1000, Mar 09, 2002 12:00AM
To: Anyone
My name is Victoria, im 16 I live in England with my parents my problem is......My mum is in her mid 40's and was told many years ago (maybe 20) that she has "spinal cord degeneration and atrophy of the nerves" she was a guinea pig for a london hospital for many years, but they seemed to make her worse, but now she has also been told that she has a under-active throid, heart poblems and many other things. Most of the time she hides how she feels, she jokes around and says things like "if i was a horse they would have put me down by now.... Currently she takes upto 18 tablets a day, their all prescribed and every now and then shes told she needs more. Weve wrote to a hospital in america but havent heard anything from them. We know she will eventually end up quad-drapedic (she wont be able to use both her arms and legs)I was just wondering if there is anyone out there who could put us in touch with a professional who could help.Also they wont find a cure or something like that because there are only 10 people in Britain with this porblem.She is incresingly getting worse, and being told she has another problem.Please reply or send me an email at VICKSTER_1000***@****

by C'sad, May 12, 2002 12:00AM
IAM N anaesthesiologist workin here in India.iam 35.

Since 3 to 4 months, I have been diagnosed as  SCD.

I was a fit absolutely alright individual before this.

incidently I started  getting tingling in both my hands,

especially the fingertips.

my fingergrips started becomming loose.

initially every body thought of cord compression.

but my MR study(cervical) revealed-

1>no cord compression.

2>altered cord signals(sagitals)

3>posterior column enhancement(axialT2)

suggestive of Subacute combined degeneration of cord.

My low B12levels confirmed the diagnosis.

&since then ive been put on Inj.B12.

1]my symptoms have not reduced to a great extent.

2]Is this desease really curable with proper treatment as books mention?

3]Is there any relation bet.EXPOSURE TO N2O & SACD?

thanq all.

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