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Hello.. and I just need to vent!

Hi all, I’m a 34 year old male and had most diseases that I’ve conjured up in my head. CJD, various cancers etc. But this time it seems a little more real. I’ve been hovering around in the background for a few weeks reading away. Seems a great information resource and little community you have going here :slight_smile: I’ve not been diagnosed, or even suspected at this stage but thanks to my inquisitive and information-craving nature, Dr Google has been my friend (or should I say enemy). I’d just like to tell my story so far and would appreciate any comments you may have. It all started, well at least for the symptoms I remember, in early January. I had a strange feeling in my left arm and noticed that my right toes would tingle when I put my feet up on the sofa. Locum GP fobbed me off with carpal tunnel with no tests and said she didn’t know about the foot and to keep an eye on it. This lasted through to early February until the toes on the other foot started tingling occassionally too and I had a week or so of light headedness. Next worry was a tight feeling across the bridge of my nose. Also I found I would wake up to pins and needles in either or both arms during the night. Crazy panic attacks started about this time, I was in a mess. Going back to the GP again and it was all put down to anxiety after realising my previous track record. Also had CBC and calcium checks done which came back clear. I kind of agreed and thought lets calm down and see. The constant tingling toes stopped and were replaced by a painful right heel with occassional tingling. If I stretch the leg and foot out I can feel the nerve pain in the heel. That symptom has stayed ever since. I had an agonising cramp in my left calf, which has pretty much stayed albeit less agonising up until now. I can feel the muscle hurting most times I walk. Went back to the GP and ended up on antidepressants. Only got a few days into these and the nose pain spread into my upper jaw. Was agonising, not sharp or stabbing but like a constant pressure. Didn’t have a clue what was going on so chucked the antidepressants and came off them. Back to the GP again (she loves me lol) and I begged for a referral since I had private healthcare at work. She was reluctant because she was sure it was anxiety. But I got it in the end. I was sitting in the neurologists office the next morning! He managed to calm me down and ordered brain and c-spine MRI’s (no contrast, but I wasn’t aware what this meant at the time), plus tests for vit B12 and D. Had the MRI’s the next morning! Unbelievable! The constant jaw and nose pain eased off around this time. I rarely get this now, and if I do it is never as bad as above. Went back to see the neurologist a week later. Neuroradiogist comments said all was fine. Neurologist took me through the images and said I had nothing to worry about. I forgot to ask about the blood tests so chased them myself. B12 was in range (297) but D was severe deficiency (21). Bit dissapointed that he didn’t discuss these with me. Anyways, I was happy to leave it there for now but since them I’ve had some other weird going ons. Still have the pins and needles arms from waking occassionally, but more worryingly had a few days on and off where my right arm and right leg feel heavy and just not right. Also, my finger tips all feel numb, I seem to have a weird internal shaking feeling mainly on my left side and my hands shake like mad if I grip something tightly. Finally, my bladder has always been crap anyway, always in the toilet for as long as I can remember, especially if I’m cold. But I can’t help thinking I’m going more often nowadays, sometimes after only a cup of tea. Of course, now this has all been going on for at least three months, with only a few of the symptoms going and so many new ones appearing, I can’t get it out of my head that it is PPMS. Going back to see the neuro this Wednesday. Perhaps I’m jumping to conclusions, but I can’t see any signs of this being a relapse, if it did happen to be MS. Thanks for listening and sorry for the long post. Just needed to let it all out! Paul.

Hello Paul, and welcome :slight_smile:

I am confident that this is not MS. I’m not a neuro of course, but the fact is that MS symptoms do not present in the way you describe most of yours, for example, tingling from MS is not positional, i.e. it doesn’t come and go depending on where you put your feet/hands/whatever. MS is caused by damage to discrete parts of the central nervous system and each bit of damage causes particular symptoms that are there all the time until either the damage is repaired sufficiently well by the body (this typically takes weeks if not months, IF it happens) or meds relieve the symptoms. This means that MS symptoms don’t come and go (although they may be more noticeable at certain times) and they don’t jump about. So, if MS was causing all of your symptoms, you would have multiple lesions - and your MRI would not have been fine.

Your vitamin D deficiency could, however, be causing all sorts of symptoms so I would suspect that that is the culprit. And while your vitamin B12 is in the UK official normal range, it’s not exactly fab so there is a small chance that it isn’t helping.

If I were you, I would see my GP about high dose vitamin D3 supplements (D3 is much better than D2) - get your vitamin D level sorted out and you may find that a lot if not all of your symptoms disappear. I doubt that the GP will prescribe anything for B12, but it is readily available over the counter. Make sure to get your vitamin D level tested after you’ve been on supplements for a while - it’s important not to let the level get too high (over 200nmol/l).

Karen x

Hi Karen,

Thanks for your warm welcome and words of reassurance.

That makes perfect sense. I guess my fear is around the symptoms that haven’t disappeared (i.e. the tight left calf pretty much constant for over 6 weeks now) and the non-constant but reoccuring symptoms in the same place.

Also, looking at other posts, you seem to be the MRI guru around these parts :slight_smile: I think it was one of your other posts on here about MRI’s, i.e. slice sizes etc. From what I can see, my brain scans mention 5/6.5 and c-spine at 3/3.6. I’m guessing the first figure is the size and the difference with the second is the gap between each slice? So 5 and 1.5, and 3 and 0.6? I really shouldn’t be interested in this, but cannot resist being a geek and needing to know :slight_smile:

Thanks for the tips on the deficiencies. As soon as I got the results, I went to the pharmacy for some advice until I can get the “real” stuff from a GP appointment. For now, he gave me D3 supplements 1000ug and said take three per day.

Sorry - I gave the wrong figure for my B12. It is actually 357, so still on the lower side of the mean UK figure I guess - well at least the one mentioned on the results (191-663 does that sound right?). I’ve been taking a general vit B supplement since a few weeks before that blood test, but that was just 2.5ug for B12. I’ve just got some new ones this morning that have 10ug of B12. I’ll take those until I can get in to see the GP.

My neuro appointment is tomorrow, so I’ll keep you posted on any update - whether it be more tests, more reassurance or just a look of “what are you doing back here, I said monitor the symptoms and come back” :slight_smile:

Thanks again.

Difficult to tell what the numbers mean without knowing what else it says, but 5mm for brain and 3mm for spine is pretty standard.

That is one heck of a size of vit D supplement - three of them equates to 120,000iu a day! I would definitely check with my GP before taking that much. Vitamin D supplements are not like vitamin B supplements - it is stored in the body rather than any excess going straight through so it is easy to take too much. (Are you sure it is ug and not iu?)

357 B12 doesn’t sound too bad to me, but again, best to check with your GP.

Kx

Right you are Karen, it was iu and not ug. So it’s 3000iu/day that I’m taking. Bloody acronyms! I had my neurologist appointment yesterday. I reeled off my problems and he didn’t seem too worried. I need to keep on top of the vit D supplements but also he wants us to get my B12 at around 500. I’ll continue to take my daily vit B complex and some extra B12 on the side. I explained how the muscle cramps were particularly bothering and affecting me. He prescribed a course of Propanolol and Clonazepam and wants me to go back in three weeks. I done well… Lasted all of an hour before I was reading up on them on Google :slight_smile: Guess I need to try and relax (easier said than done) and see what happens! Got a nice break in Cornwall for a week, so that should help take my mind off things I hope! Thanks again for your advice and comments.

Well, phew about the iu! 120,000iu a day is probably too much for an elephant :slight_smile:

However, 3000iu a day isn’t very much and it might take a while for it to make a dent in your deficiency. You can get higher doses on-line, and probably cheaper than your local chemist’s. A lot of us use Healthy Origins vit D3 capsules. They are pretty good value from amazon usually, but do shop about on-line. 5000iu a day appears to be the most commonly recommended supplement for people with MS these days, but you could probably go a bit higher in the short-term given your low level (do check with your GP though; actually I’m surprised he/she didn’t prescribe you something, they usually do for deficiency). Make sure to get a blood test in a month to see where your level has got to and then adjust the dose accordingly.

Low vit D levels cause muscle pain & cramps, so it’s very likely that these will ease as your level improves. Don’t overdo it though - high levels can cause similar symptoms. Aim for 125-150nmol/l; it seems to be the ideal level, according to various websites anyway.

Kx