Just thought I'd mention this because it's been more on my mind recently:
I've had increasing bouts of tremor - most particularly over the last 8 months or so. But then again I've had a stressful time of it.
Now I seem to have got to the stage where I have tremor more often than I don't. I might have a few hours a day when I'm perfectly free of it, but the rest of the time I'm 'aware' of it. Legs seem to have the most problems.
But also, and I've only noticed this over the past few weeks, sometimes I'm aware that I'm slurring my words. Just maybe part of a sentence, but I can hear myself - and I'm too embarassed to ask the person I'm talking to 'did you hear that?' It's like my mouth isn't quite forming the words properly.
I know I've got problems relating to balance etc and that has now been recognised and I know that I've got muscle fasciculations - but the tremor thing is definitely more pronounced than it used to be and the slurring thing is new. I did lose my voice a few times for long periods when I was b12 deficient but it wasn't like this.
Any thoughts...
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Poppet11
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Does not sound nice at all for you..there does seem to be an association with neurodegenerative conditions such as Parkinson's and hi homocysteine. Which as you know can be caused by a functional B12/ folate/ B6 def. Loads to read see:
Hyperhomocysteinemia and neurologic disorders: a review.
Ansari R1, Mahta A1, Mallack E2, Luo JJ1.
Author information
Abstract
Homocysteine (Hcy) is a sulfur-containing amino acid that is generated during methionine metabolism. It has a physiologic role in DNA metabolism via methylation, a process governed by the presentation of folate, and vitamins B6 and B12. Physiologic Hcy levels are determined primarily by dietary intake and vitamin status. Elevated plasma levels of Hcy (eHcy) can be caused by deficiency of either vitamin B12 or folate, or a combination thereof. Certain genetic factors also cause eHcy, such as C667T substitution of the gene encoding methylenetetrahydrofolate reductase. eHcy has been observed in several medical conditions, such as cardiovascular disorders, atherosclerosis, myocardial infarction, stroke, minimal cognitive impairment, dementia, Parkinson's disease, multiple sclerosis, epilepsy, and eclampsia. There is evidence from laboratory and clinical studies that Hcy, and especially eHcy, exerts direct toxic effects on both the vascular and nervous systems. This article provides a review of the current literature on the possible roles of eHcy relevant to various neurologic disorders.
No way I could have a functional b12 deficiency. I've always presumed that my problems are related to the fact that I never had any physical rest after I'd got my deficiency identified. And, to a certain extent, I'm sure I'm right. You wouldn't go around walking on a broken leg and expect it to heal properly, so why expect damaged nerves and muscles to. But this other stuff, particularly the slurring, doesn't tally with 'normal' b12 deficiency issues and the tremor is really starting to affect my day.
The high hcy thing might be a trigger to something like this - I never had it checked when I was deficient, but we know that the deficiency went on a long time untreated so it's probably accurate to say my hcy was high at the time - whether it is high now I've got no idea.
I'll have to read up the links you've provided and decide what to do next.
Hello.....you may be interested in knowing that a company called Immunotec in Montreal, Quebec Canada has done research on Parkinson's. There natural product called Immunocal (given the green light by Health Canada) has helped a lot of folks. My girlfriend with Parkinson's disease also takes 1tbsp of liquid B12 daily - she holds it in her mouth for 3 minutes before swallowing it, which enables the B12 to go into her system. Immunocal keeps your immune system strong to fight disease & auto-immune disease. I take 1 pkg daily as preventive medicine. Hope this may help somewhat.
Found this bit in one of the links Marre provided - "The actions of eHcy on vascular endothelial cells lead to the proliferation of smooth-muscle cells."
Anyone got any idea if this would be related to smooth muscle antibodies?
A situation keeps popping up - I don't know if anyone saw the photo I put up of my blown vein - but smooth muscle is related to veins and organs not under control. i.e. they work automatically.
Lots more here, see:
Promotion of vascular smooth muscle cell growth by homocysteine: a link to atherosclerosis
Actually, me too. I was increasingly well after treatment, having been bed bound, but suddenly stuff started to creep in. It's not the same as when I was v ill with PA, but it's similar. It took about 12 months for the additional stuff to creep in. Depressingly, I find ramping up b12 and doubling folic acid to help. Depressing, because it is costing so much already. And depressing because doctors want to cut b12 the whole time, not vary or increase it. I do get loading doses on the NHS, but they are trying to stop these. The rest I buy privately, both methyl and hydrox.
Does anyone else have a doctor who thinks you can have only one disease at a time? I think my thyroid might have gone - everyone else has hypothyroid in my family, and multi autoimmunes are common, not rare, but my doctors are like, "well, looks like it must be something else", even though all PA symptoms return if I space out jabs more than I need them. Imagine if they said, "no more inhaler for you. You had a puff last week". And on that subject, b12 controls my asthma much more effectively than anything else. If they stop my injections and there comes a time when I can't afford private b12, my suffocating will soon resolve the problem.
I remain philosophical and hopeful about my own brain. Twice I have been almost dead, and twice I have been brought back by very simple means. The gluten free diet and b12 are more like magic than medicine. Maybe we didn't totally dodge the bullet from our deficiency... and not all damage can be recovered. I don't know. But compared to where I was last year, and even with these problems that are so similar to what you are describing, I am a minor miracle.
In the past I've put up several threads about the stages of b12 deficiency and how some people go past stages 1 and 2 and start to get to the point where they suffer damage that is irreversable.
To be honest I get to the point where it seems that I'm fighting against the tide because no matter how many times people read that b12 deficiency can result in 'permanent neurological damage' (it's even in Wiki!!!!) everyone talks about b12 deficiency as if it is always reversible.
I'm not quite sure anymore what is so difficult to understand about those 3 little words but they seem to confuse quite a few people.
All the articles you see, everything your read, talk about it as if it is a blood condition - and it is not.
In short it is clear that many people who talk about this illness actually don't understand it - or, they only understand the early stages, which is what happened to them.
Until we can get medical professionals to look at remaining symptoms in light of the original damage that could have been caused by b12 deficiency then we are left in the position of trying to establish exactly what is going on and trying to sort it out.
No doubt my physical condition is getting much worse. But then I've never had any help or rest. I have however had a load of people running around me professing to understand b12 deficiency (usually ex-nurses who think it is a blood condition) which has compounded my problems no end - and I wish they'd shut up.
Are my injuries as a result of compounding original nerve damage sustained when my b12 deficiency was overlooked? Did the original b12 deficiency trigger another condition? Do I have another condition distinct from the b12 deficiency?
I don't know, but to be quite honest I am sick of coping with the practical problems of whatever illness I have, on my own. And I'm heartily sick of the people who go running around declaring that once a b12 deficiency is identified and treated then everything for all people, returns to normal.
Height of ignorance.
In fact, just to add - my concern at the moment is my increasing tremor and my walking. Bearing in mind that I used to walk 3.5 miles to the shop and back (with my shopping!) Now I worry about walking 100 yards because I know it will trigger further muscle problems and tremor.
I phoned someone who is knowledgable about b12. Could I get to talk about what I wanted to talk about - the mobility issue? - I could not. It was completely swept under the carpet and they proceded to talk at me about the aspects of the illness they were interested in. I was gutted.
Losing the ability to walk is of some concern to me. I don't want to discuss blood levels or other, quite unrelated conditions, I may or may not have which have no affect on mobility.
But, unfortunately that is where we are at at the moment - being 'diagnosed' over the phone without anyone having a complete picture or understanding what is happening to each individual.
I completely, totally and utterly understand, and am in a very similar position. I did not recover. I lived, but am very broken. And I agree totally, doctors do not understand that broken means broken, and assume you didn't have B12d in the first place. I consider the constant fighting with doctors, and against their ignorance, to be the most exhausting part of this whole experience. Evidence based medicine is killing us, because there isn't enough. Not our fault. But when did a dying patient, right in front of your eyes, cease to be some form of evidence to a doctor? The well-being of the patient, and quality of life, seems to be irrelevant in B12d.
I just realised that you are struggling even with someone in the know. Depressing!
The mistake I made was in believing that the people who said they understood b12d, actually understood it.
They didn't.
And still don't, from what I can see.
They don't understand it progresses in stages and that only the initial stages can be reversed fully.
They believe it is a blood condition. It's not.
If you go to the Diagnosing and Treating Vitamin b12 Deficiency on Youtube and watch the section on Dave Carr, you can see what damage the later stages of b12 deficiency can do physically. Dave Carr didn't have anaemia.
So you've got the Stage 1 stuff, which is the fatigue etc, through to the Stage 5 stuff which is paralysis etc and the 3 stages in between.
My problem has been that I believed the people who had the Stage 1 and 2 stuff understood what happened after that. They dont.
And neither do doctors which is why people like Dave Carr usually get misdiagnosed/overlooked and Dave was very lucky to get it identified and treated.
I can tell you now, in all the people you've spoken to about b12d, I bet not one person has every attempted to establish which stage you were at prior to your treatment commencing?
I know I never have.
Everyone I've spoken to has assumed that we all get to the same stage and then get symptoms reversed and talked to me as if that is what occurs.
I know how you feel. I started out with my thumb shaking, then my left arm, and now both sides shake. I am not conplaning I depend on the Good Lord. Keeping a good attitude is a must. I know its hard to sometime. Hang in their.
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