Tingling numbness in fingers and weak wrists. could this be the start of ms?

[smellyfishead]

For 2 weeks now ive had a numbness in my left hand, the outer three fingers. saw a nurse 10 days ago who thoroughly examined me, she said it doesn't appear to be carpel tunnel or ulnar nerve entrapment and sent me away to take nurofen and come back if it got worse.

Well the sensation has not subsided at all and in the past 2 days im starting to get a numbness in the same fingers on the other hand.
Ive also had a weak wrist on the right arm-which ive had since last oct but I just thought id slept funny on it and haven't paid much attention to it. Now both wrists are noticeably weaker-eg simple things like getting a casserole dish out the oven or lifting a half full kettle- my wrists feel like they are going to give out. I also have occasional swelling round the base of my thumbs.

Ive had some tingling numbness in both feet too although that comes and goes like normal pins and needles.
Although im on the cuddly side, im always cold, like I feel the core of me is cold, even though my hands may be warm iyswim? the only other thing different is ive also had a few incidents in the last 2 weeks where ive not quite made it to the loo in time this is completely out the blue and im not drinking excessive caffeine or carbonated drinks.

Anyone had similar symptoms, what did it turn out to be? anyone got ms, how did your symptoms start?

Im back off to drs later today, nurse said nect step is nerve conduction study so will report back when ive seen the dr later.

hmm this is all interesting....

I could not be b12 deficient from diet, not a chance, I eat green veg daily and fish 3-5 times a week, id have enough b12 multiple times over just with the fish!

however Ive just found this

"Functional vitamin B12 deficiency

Some people can experience problems related to a vitamin B12 deficiency, despite appearing to have normal levels of vitamin B12 in their blood.

This can occur due to a problem known as functional vitamin B12 deficiency – where there is a problem with the proteins that help transport vitamin B12 between cells. This results in neurological complications involving the spinal cord. "

Im intrigued as a) a few years ago some bloods came back and the dr just said the red cells were larger than they should be, she said it didn't mean anything....maybe my b12 appeared ok?
b) I have as do 2 of my children a sacral dimple, probably un-related...?

will check they are testing for b12 when I go in this week.

I also intrigued as to whether my plantar response was normal, he definitely tested that, will ask that too.

I have plenty b12 in my diet too - I don't absorb it very well though. Lots of people don't as it is a large molecule with a complex absorption pathway, if just one element of that pathway is diminished you can eat all the b12 you want and still be deficient.

I had the large red blood cells too, indeed it was the only thing that wasn't in normal range. This happens as lack of b12 (sometimes combined with lack of folate) means the body can't make red blood cells correctly and releases immature overly large ones. This is called megaloblastic anemia and it is different from iron deficiency anemia. Lack of b12 also interferes with nerve function and this is why the tingling happens.

Please ask to have both your b12 and your folic acid looked at. The fact that you have children with a sacral dimple is almost definitely related - this can be caused by lack if b12 and or folic acid. My DD1 has a sacral dimple. If you also have blue eyes and prematurely grey hair you have a full set of predictors!

Please get tested ASAP. If you are deficient please read up or get advice here as many doctors are unaware if how much supplementation you really need to get better. It is important to get proper treatment in order to avoid permanent damage. Get tested! Although as you have read, tests are only part of the picture, symptoms must be carefully considered.

Forgot to say, b12 isn't part of a standard full blood test, you generally have to specifically ask for it, which is outrageous considering how common deficiency in it is. Same for folic acid.

Hi fruitsherbert, sorry to hear you have this issue too. I have only recently found out I have this issue after months of trying to figure out what is wrong with me. I have read up a bit but I'm fairly new at this, there are quite a lot of very knowledgeable MNers, we should start a B12 support thread!

From what I understood, not only is it possible that every 3 months is not enough but often people with b12 deficiency have other deficiencies too. I am low in vitamin D for example, and I believe this is quite common. Also the far spacing of the injections can create a sort of rollercoaster situation where you get a whole load of b12, your body frantically tries to repair things, this uses up other vitamins and minerals and makes you tired and then when the injection starts to wear off that makes you tired.

I know a lot of people take sublingual b12 daily to keep topped up between injections, Jarrow 5000ug is often recommended or 1000ug if you feel you need less (you can buy it on Amazon). Make sure it is methylcobalamin you take and not the synthetic cyanocobalamin which is much harder for the body to use. Apparently even if you have absorption problems or a lack of intrinsic factor, you will still absorb some oral b12 either under your tongue or if the upper part of the intestine. You only absorb a little (around 1 to 2 %), hence the high dose.

Folate deficiency often is an issue too. Again make sure you take methyl folate (Jarrow do this too) and not the synthetic folate (usually called "folic acid"). Folate supplements can "mask" b12 deficiency so it is not a good idea to take folate alone.

Do you know what your levels are for folate and vitamin d? You should have had ferritin checked too.

I know what you mean about not wanting to mess with things and I have heard other people say that they are afraid their doctor will stop their jabs if they appear to not be justified. It really is outrageous. It does sound like you need the jabs more often. It is quite odd how reluctant doctors seem to be to give them. My doctor refused to put me on jabs as he says I'm only a little bit low. He prescribed 1000ug orally once a day for 10 days and then once a month for three months! It isn't nearly enough. I think one of the big problems is that the ranges used are out of date and more recent research suggests that the optimal level is quite high and that a lot of people need to be really high to feel well. I believe in Japan they consider less than 500 to be deficient whereas in Europe it is less than 200. I don't think enough consideration is given to individual variation. I was 160 when tested and could hardly stand up, felt faint all the time, had chest pain and palpitations, couldn't use my hands properly, had sore joints and muscles and couldn't work or look after my kids properly.

My doctor will be perfectly happy when I'm just scraping 200 even if I actually feel fatigued and sick at that level!

It is incredible how bad lack of B12 makes you feel and it really is a scandal how underdiagosed and undertreated it is. Like you I thought I had some terrible disease, I was googling MS, leukemia, heart disease, etc. I was ill for months and my doctor ran a bunch of tests, told me there was nothing wrong (there was, even in the tests) and offered me anti-depressants! I diagnosed myself after reading on here and other places and had to persuade him to run the test.

Do you think you could talk to your doctor about needing your injections closer together? Or about taking an oral supplement - you should be properly well, not just well enough according to an outdated blood test. I know lots of people need the injections every 2 months, every month or even more.

smellyfishead, I really hope you get to the bottom of things. Lack of B12 makes you really ill but it can be fixed so it wouldn't be the worst thing in the world to have wrong. Let us know how you get on.

I thought carpal tunnel straight away.

Ime physios are much better on this. Might be an idea to get one of them to check....

I've had numb hands and fingers on and off for years. It's been blamed on me using crutches, my medications, carpal tunnel which was ruled out after nerve conductor tests, and "we don't know." My feet are continually fizzing and tingling too. I'm going to ask for my B12 levels to be checked.

Forgot to say, smellyfishead, that urinary issues are common with B12 deficiency - frequent urination, not being able to hold on and pain on urination are common. I don't know why but I'm guessing it is a nerve issue.

I had a diagnosis of MS in 2010 but in the proceeding 10 years I had many episodes like this. When I look back there was a very definite link to MS but at the time it was all a mystery. Would I have wanted an earlier diagnosis, at the time I would have said no, looking back I would say yes. I am now on disease modifying drugs and I know through research this is giving me the very best chance. I am not saying for you this is MS what I am saying is to pursue your diagnosis so you give yourself the very best chance of improvement or at least stall it.

Right so a little update. basically I went back for bloods, they only did basic tests which showed nothing so then I asked for ferratin and folate, those were done last week and I've heard nothing so I think we can safely say it is not a b12 deficiency of any kind.

The numbness is still there the same as it has been since the end of January, the dr said she would refer me on for nerve conduction tests.

I have a new symptom though, Ive had 3 migraines in the past 2 weeks, ive never had migraines before ever and very rarely get headaches so this is all new, they don't respond to painkillers that well and yesterdays one made me violently vomit so now im concerned about that too. Am waiting for the dr to call me back later today to tell me what I should do now.

Have rung opticians and booked a eye test for in a few weeks time incase its eye related and am considering going to see a chiropractor in case it is a trapped nerve or something.

Umm, so the dr doesn't seem too bothered about the sudden severe headaches/migraines(?) I explained I felt like my head was going to explode, the pain came from the back of my head, like where your skull meets your spine/neck iyswim? last night I didn't know what to do with myself, the pain was off the scale, dizziness, sudden vomiting Ive never had a headache like it. he just said book an apt with gp.
my heads felt a bit tender today, I started to get a dull mild headache at the back this eve and have taken soluble co codamol on advice from the chemist.

Not sure what to do now, am going for the eye test but wondering about whether the chiropractor may cause more damage if they're not sure what they're treating?

what is everyone else's opinion, would you ask for further tests? or should I resign myself to numb fingers and debilitating headaches/migraines? the fact ive never suffered from anything more than an occasional comparatively mild headache then have had three major ones in a matter of a couple of weeks concerns me abit. Any migraine suffers out there? did they start suddenly in adulthood? any tips to deal with them? specifically the nausea and vomiting?

I know you want a diagnosis and it is very frustrating that it is taking so long. I am sure there are a 100 things this could be but I know you are thinking along the line of MS. MS is called the snow flake disease because everyone has different symptoms, it's not easy to diagnose.

I had been back and forwards to GP with various problems for years, labyrinthitis, vertigo, headaches (ocular), numbness, tingling, hot & cold sensations, balance problems, visual disturbances, the MS hug (google that one, I thought it was shingles and so did GP) Bell's palsy (1st symptom) , Lhermitte's Sign (my 2nd symtom, this is an electrical sensation down spine, into legs when flexing the neck forward). I had minor bladder problems, numb fanjo & anus, when also a hot bath felt cold and a cold bath hot. It was constant numb hands that finally give me the referral to neurologist and a different GP in the practice. The numbness and tingling would last a few weeks in each location then appear somewhere else. The only long term numbness I have is numb hands, not enough to cause problems with everyday tasks, more surface than deep numbness IYKWIM.

MS is diagnosis made only by a neurologist taking a full history (do keep a written with dates diary of everything you experience if you think it is MS) an MRI scan and lumbar puncture. With me it was sure I had MS after the MRI as the lesions could be seen on my cerebellum so no need for lumbar.

As you ask about MS, these are how my symptoms started, this is NOT to say you have MS it is a very complex disease. As for your headaches, yes I would go back and ask for further tests. Actually at this stage with the symptoms you have presented I would be pushing for a referral to neurologist.

Im not sure what other test there is for b12?

They've done b12 serum, folate and ferratin, all normal.

I had similar symptoms and eventually saw a neurologist and had an MRI scan. The scan showed that I had damage to the Myelin sheath in my neck, it was causing the symptoms but they couldnt diagnose the cause of the damage. The neurologist said that it could be from a whiplash type injury or the onset of MS and that time would tell. I had to make a note of any new symptom or worsening of the original symtoms and I saw the neurologist regularly for about two years. Luckily in that time it got no worse and I was discharged from the clinic. I'm still none the wiser to the cause of the original damage as I can't remember anything happening to cause anything like whiplash.
If I was you I would definately ask for a referal to a neurologist if nothing shows in the tests by your GP.
I hope you get some answers soon, good luck.

I would chill out and not get too anxious about your symptoms or think they are all linked.

There's a lot of neurotic nonsense on the Internet about b12 and Vit D deficiency. And often those who shout the loudest aren't those who are correct.

I have read this with interest. I have had the same symptoms as you in my right hand and arm, also a sore elbow. I had an xray done which clearly shows something floating in my elbow joint. I am having an ultrasound done to see what it is.

Maybe suggest to your Dr an xray of the elbow. If something is getting in the way it will show up.

I can't comment on the migraines, I get them anyway! :( I'm also having blood tests for loads of things (about 10 so I won't list them here & bore you all!) to rule out anything more sinister.

HTH

ok so another update, went back to the dr yesterday about it all. she retested my plantar reflexes, examined my neck and shoulders again.

I specifically asked about my vit b12 serum result as I was told it was normal, its apparently 120
And ferritin is 15
She said those were both within normal levels.

We discussed the migraines/headaches, apparently they were not migraines as those are classified as headaches with an aura and start on one side, whereas mine I had no aura and the pain radiated from the back of the head. Apparently despite feeling dizzy and being very sick it still only constitutes as a bad headache and nothing to worry about.

What grates me is the conflicting advice, the internet says go see a dr if its the worst headache you've had/if they wake you from sleep and if they're out the blue with no history of headaches!!

were still waiting for the apt for the nerve conduction studies and the dr said she will write to the neurologist at the hospital and ask for their advice on what to do now.

I haven't read the whole thread but I had muscle weakness and tingling and restless leg syndrome with a ferritin of 55. I'm not sure 15 is good - but ask for print out and check the ranges?

For example, my range said upper limit of 130, so I'm aiming for around 80/90. I have hypothyroidism though so don't know if it makes things worse or not. I *think the b 12 is a bit low too.

Ps I thought I had Ms too. I think I had transiently low b12 following recovery from lots of muscle wastage by the time they tested id been really upping it for a month.

But, also, the muscle wastage had led to very bad posture/ shortened muscles which I think affected lots of nerves too. So it was in the rheumatologists words 'a mish mash of lots of things which only time and physio will solve' (and correct levels of iron and thyroid).

I kind of had carpel tunnel all over my body.