Weak arms and legs

[irishgal]

My body is feeling very weak especially these last few months. I went to my rheumatologist last week and did the usual push against him and pull away from him and said there is definitely muscle loss and has set up a load of tests to be done and will see him in another 2 months when all the results are in . Has this happened to anyone else or could tell me what they're looking for getting a bit stressed out with it all

[GeorginaB2]

Hello,

I've been following this forum for a while because I had Raynaud's as well as ataxia, and a lot of posts have caught my eye. But none more so than the one above.

I read this book before Christmas, smashwords.com/books/view/6...

(Changed it from Amazon to Smashwords because you can read more inside and it's cheaper!)

and there are lots of illnesses mentioned, but one which kept cropping up was Scleroderma.

Admittedly I don't follow this thread in depth but I really think it is worth educating yourself about the true nature of B12 deficiency and the things it can cause. Also most people don't realise that the test they do can be up to 90% wrong and also that even when your B12 levels are normal it doesn't mean you still don't have a B12 deficiency - which causes, amongst other things - muscle problems and loss.

Since I read it I went out and tried to find a doctor who knew at least something about the information provided in the book, because most don't seem to. And I have, at least by email, communicated with one who was not in the least thrown by the fact that my ataxia was actually caused by a B12 deficiency (which I was diagnosed with some time ago) and also that everything wasn't put right simply because my B12 levels were brought back into the normal range. He has been providing me with information to give to my doctors about how to exercise and things to check for - all of which were in the book which triggered my whole investigation into it.

The doctor that I got in touch with is now retired, but he is (or was) a specialist in his field. But most doctors haven't got a clue about B12 deficiency - as I know to my cost.

It might be worth checking out and then it would stop your Rheumatologist running around looking for the cause when it's right under his or her nose!

Good luck!

[Lupiknits in reply to GeorginaB2]

Thanks for this Georgina. My push-pulls show increasing muscle wastage, which they have tried to help with physio. The physio has been put on hold because my body can't manage the energy expenditure. I'll make enquiries about B12 tests.

[GeorginaB2 in reply to Lupiknits]

Hi,

I know it's difficult to understand but the whole point of the book is that there is no point in having B12 tests. Or, at least there is little point in having them to diagnose the condition and there is certainly no point in having them to see if your damage has been repaired.

I don't know how this resounds with you, but this is a quick rundown of what happened with me.

I was diagnosed with ataxia, cause unknown. After that I had a B12 test and was given injections to put it right. It didn't take long and my blood levels were back to normal.

Doctors think nothing of it.

Ataxia keeps getting worse.

Then I read this book, which says that B12 deficiency can cause ataxia and muscle problems and a load of other things, and that putting your B12 blood levels right means little or nothing. The damage has been caused when B12 levels were low (and that test is wrong up to 90% of the time anyway so a lot of people are getting missed) and just raising the amount of B12 in your blood means your blood is okay - it doesn't mean your muscles are.

So, I go around trying to find a doctor who can explain this to me and, eventually, I find one who says, 'Oh, yes. Your muscles (and central nervous system) were probably damaged when your B12 levels were low and you need to undergo therapy to retain the muscles and nervous system and you also need regular injections of B12 to ensure you have enough not just to keep your blood levels normal but to make certain that your cells are getting enough - and blood tests can't establish that.

Now, no other doctor has ever told me this - that I could have been permanently damaged by low B12 levels. All they have ever done is put the levels right in my blood.

Also, and before I forget - the motor neurone (ALS) people in the US are recommending that their patients have 25mg of B12 by injection PER DAY. And what they have found is that it is extending the lives of many people by as much as 600 days. Which is unbelievable when you consider that this is a terminal condition with a very short prognosis.

So, that's part of the reason I recommended you read the book. Having blood tests and then a few injections and then another blood test, means nothing. It's just making the same mistakes over and over again.

[Lupiknits]

Thank you. Your explanation makes it very much clearer . I must read up on it more x

[Hidden]

Hi Irishgal and LK - have you had nerve conduction studies with EMG done yet? I ask because I have a lot of weakness too -especially noticeable in my arms. But when tested my nerves and muscle responses were all really good. So I'm not sure what this is about in my case - but I think it rules out Polymyositis and other muscle wasting conditions probably. Mine has affected me mostly when I'm resting and feel polaxed, almost paralysed by the weakness - as if I can't move. Then I do and I'm okay but arms feel wiped out for increasing amounts of time. Wonder if it's confirmed arthritis in my neck but this wouldn't explain my my legs and would have shown up in EMG. Think it's somehow related to a vascular process because of Raynauds, Sjögren's and the hard skin now on my finger tips and ensuing pain when typing etc but not carpal or tarsal tunnel apparently.

I see the neurologist again for six monthly review next month so I plan to ask her more as she commissioned the NCS and EMG.

Have you seen a neurologist yet and has Polymyositis been mentioned as a possibility? Myosotis can be a part of Sjögren's and maybe Lupus too? - haven't yet checked out Scleroderma but as it is closely related to Polymyositis I am making an educated guess that it can be a feature for some. X

Ps my B12 levels have been healthy whenever tested and I checked them out myself privately through a Homostycene test and another I can't now recall. I take sublingual B12 just in case - but I do agree it's a very underestimated deficiency

[Duttie]

I have the same problem, although it started in my arms. I was diagnosed with arthritis in my neck and had 2 discs removed. Was told that the discs had damaged my spinal chord and the damage was permanent, 2003. However over the last 6 months I have felt weak all over, I am due to have MRI of legs tomorrow. Some replies have mentioned Polio, but I thought it had been eradicated in the western world, I had it in 1949.

I think this is quite a common underestimated problem in Scleroderma, but your Rheumy seems to be setting up all the tests for you, so I suppose you have to be patient and await results. Try not to worry too much, stress doesn't help.

Best wishes for a diagnosis.

[sussej]

This has been my experience with Ssc too but over the last few months the medication seems to have kicked in to help matters and my arms are much more flexible. I have had to give up driving as I have a manual car and both steering and changing gears required more strength than I had. I have also just seen the physio (long wait!) but not sure that the exercises I have been given will help much as there are few of them but I will be positive. So be patient and hopefully things will work themselves out for you - I do hope so

[Duttie in reply to sussej]

I saw a physio too and didn't find the exercises for my arms particularly helpful. However I was also sent to the hydrotherapy pool, absolute bliss. The exercises I did in there were brilliant for relaxing my shoulders. But I could only have 6 sessions, am waiting to hear from my local hospital to see if I could use their pool for self management on a weekly basis - it has been a long wait to hear. See if you can get into a hydrotherapy pool.

[angi123]

Hi, I am undergoing tests at. The moment for sclerooderma/sjogrens/Raynauds.last night I was wiped out after work and today I feel very weak , have the shakes and feel a little woozy. Is this part of it, or is it my blood ? I am on folic acid as my blood test showed I was very low.

[Goldyukr]

I have myositis and neuromuscular junction dysfunction (similar to myasthenia gravis). I get very bad weakness in my arms and legs when this is acting up. Do you notice it getting worse as the day goes on? That's my secondary. But I also hve small fiber neuropathy and vessel wall instability. Sometimes it's hard to know which one is giving me problems because they overlap a lot. If it is one of these problems, you have to be careful not to overmax the muscles with too much exercise. You can actually cause yourself damage if you're not careful. Mine was diagnosed by an EMG and a very good neuromuscular specialist. My rheumatologist didn't agree but it's not his specialty. I have more trust in the neurologist on this matter.

[GeorginaB2]

Sorry about this but I didn't realise there had been all these responses - I've only been notified of a couple of likes!

Let's just go back to the B12 thing, because from what I can see from the above posts people are still talking about it as a blood condition, which is not right. It does affect the blood, but it also affects muscles, nerves, the central nervous system etc and your B12 blood levels being normal doesn't mean you DON'T have a B12 deficiency.

Hang on, I'm going to go look for something...

[GeorginaB2]

Found it. I'm replying to myself.

Someone told me that if you go on a site other than Amazon you can see more of the inside of books!

On this site

smashwords.com/books/view/6...

if you go to pages 17/18 it gives you a list of symptoms that go along with B12 deficiency. One of them is folate deficiency as Angi123 mentions, and there is a whole chapter about that. It also warns you should never take folic acid on it's own.

It also says a little earlier in the book that B12 deficiency has been known for over 100 years to cause either anaemia, or neurological disease, or a combination of both.

So, you can have neurological disease without having the anaemia side of things.

If you can get through the first few pages then you might realise what I'm trying to say - but basically we are back to treating the symptoms ie hydrotherapy etc, rather than treating the cause of the disease (or at least a possible cause) which is the B12 deficiency which isn't showing up in tests.

You actually have to read the book loads of times to let it all sink in because most stuff we thought we knew about it, is wrong.

Very complicated, but very enlightening.

I hope the link works, it didn't the first time!

Yes, it does. You can read it with the online reader and don't need Kindle or anything.

[irishgal in reply to GeorginaB2]

That is very interesting georginab2 but I'm not sure how would doctors know if B12 is the cause if they tested it and find that B12 is OK but unknownly was wrong at the beginning of the symptoms and had rectified it self

[GeorginaB2 in reply to irishgal]

Hi Irishgal,

I think one of the major things going on is that there is no way to establish it by a test. I don't know if you've read the inside of the book link I sent you, but I recommend you do. Because it can answer a lot more of your questions than I can. Although I don't think a B12 deficiency 'rectifies itself.'

The motor neuron (ALS) people are looking into it. But they are treating symptoms rather than relying on any tests. And their patients have a terminal prognosis. And they say that it's the only thing which is extending the lives of patients and not causing any side effects. And they recommend 25mg (a lot!) per day by injection.

So all the drugs (extremely expensive) and everything else that is given to these patients is doing little - and this is a neurological condition - apart from the B12 injections.

[irishgal in reply to GeorginaB2]

Do you think that maybe it's too late for me to take a B12 supplement but should my children take it as a precaution and not cause any harm if they didn't need it sorry to bombard you for information I did read the book well the pages you highlighted your last post has made me understand what you are saying

[GeorginaB2 in reply to irishgal]

Hi Irishgal,

I don't know. It's really not my place to say. All I'm trying to do is pass on information that I think might help people inform themselves and ultimately improve their situation.

[tall-tim]

I had the ECG spark test and muscle biopsy in 2015 because I found my limbs were getting weaker. This led to a diagnosis of myopathy and a drug treatment regime (methotrexate) which has been successful. I was also given a big dose of steroids (tapering off since then).

[Inamoment]

I am also quite feeble. I first noticed I had problems emptying the dishwasher, I can only lift two plates at a time into wall cupboards. I was given a hand exerciser for Christmas, I have the grip of a 10 year old girl! I am pretty sure my b12 and folate have been checked and are OK.

[Holding2]

My doctor ran a lot of tests and says I have Functional Movement Disorder and possible dystonia. I have Raynaud's as well. My hands tremor and my legs are weak. When I bend down to and stay there for a moment helping a student in class, I can not stand up unless I push on the test with my hands. My legs alone will not do it. So frustrating.