Answers - Maybe at last!

Hi folks,

I first ventured to GP in 1998 with severe fatigue. They tested my thyriod and when it was OK I was kinda given a dx of ME. The fatigue got so bad that I finished work in 2000 to care for my young children - I couldnt do both any more. In 2005 the numbness started. I was sent to a neuro and had an MRI as they thought I had MS. As it was clear I was sent packing, my symptoms were just part of ME.

In 2008 the fatigue and numbness was severe along with pins and needles and the GP would not send me back to neuro. In 2009 I told the doctor that I thought I had foot drop and he just laughed. In 2011 I went back to neuro privately and had another MRI and LP. The LP was clear but the MRI showed a lesion on the cervical cord. He said I had delayed radiation myelopathy from treatment I had in 1990 for cancer. i alerted him at the time that I had a clear scan in 2005 (15 years after the treatment) but he still stuck to his theory.

In 2012 I saw another neuro who suspected possible PPMS even though another LP was clear.

A few months ago I asked for B12 tests following a thread on this sites. My B12 was low but within range but on my insistance They gave me B12 jabs and I felt so much better. All symptoms improved except for the spasticity.

The latest theory from the neuro is that the radiation effected my way of absobing the \B12 vitamin. The radiation did not directly damage my spinal cord but the prolonged lack of B12 over such a long time has caused nerve damage.

Chronic B12 defiency starts with fatigue, then pheripheral neropathy (numbness) and then cord damage causing leg weakness and spasticity. Symptoms resolve when treated with regular B12 injections if treated early. Nerve damage can be permanent. I cant help wonder if I had been tested properly in 2005 and treated then when my walking was normal would it have prevented my continual decline in my walking ability. Not to mention the cloud of fatigue that I have lived with.

My treatment starts next week with injections every other day for several weeks - followed by weekly injections for life.

Wish me luck

Moyna xxx

Hi Moyna, how frustrating to know that if you had been treated soon you might have not had all these symptoms and your mobility would be ok!!! Well… there is no point I suppose looking back… the point is that they might have found what is causing the problem!!! I really wish you luck hon and hope the B12 injections will be an end to all of this uncertainty. You know, if B12 is the answer your walking might improve anyway. I think what happens is when our mobility is bad the muscles of course start to weaken as we are not using them. If your mobility improved just a bit you could start to strengthen those muscles. I certainly hope that is the case and you can get full mobility back. Do keep letting us know how you’re doing. Wishing you all the luck in the world hon… would be so fantastic if this is the answer for you! Take care… fingers and toes crossed, Pat xx

Hi Moyna

I have everything crossed for you hoping these injections do the trick, but how frustrating to now know that these might have stopped things progressing, but as Pat says, there is no point looking back.

Onwards and upwards Moyna, one day at a time.

Pam x

Fingers crossed for you Moyna, I hope you’ll keep us posted on your progress

Sonia xx

Good luck with the injections Moyna. I really ,really,hope they help. Let us all know how it goes. Best wishes, Nina x

Moyna your road has been very long and frustrating. I hope for your sake that you have answers and your symptoms can be reversed. I also have cord damage at cervical level so understand the numbness and tingling and body parts that no longer work and know how I’d feel if things could work normally again. I just wanted to wish you luck and hope you’ll keep us posted on how you get along.

Take care

Cath xx

Thanks everyone. This theory does seem plausible.It would account for the symptoms I had in the 1990s. The radiation theory I didnt really believe as the scan in 2005 was clear. I didnt really think RRMS as I havent had relapses. My walking problems could seem like PPMS yet deteroration has been very slow for PPMS and I have sort of stayed the same for the last 2 years.

So i hope the have it right this time.

I will keep in touch as I have become very fond of you all.

Love Moyna xxx