long story short ( ish). I started getting ill last May 2015- numbness, fatigue, right side weakness, strange ’ feelings’ on body head, then started collapsing, this on top of the pain- saw musco skeletal team, Mri done on lower back - mild degeneration but apparently normal, more falls more pain referral to neuro after bladder trouble all of above and loosing ability to walk, had mri ( no contrast) ct scan evoked potentials- mri ct were normal at appointment for neurologist in which I went into on two walking sticks aided by my husband neuro said " all scans were fine, we are not worried, you do show vit d deficient so this is all to do with that" I had to ask him what about evoked potentials his reply " oh yes I haven’t looked yet" he had already written on my form ’ discharged’ he then phoned secretary she told him results over phone ( what does she know?) he said " all fine" at this point my husband asked him so that’s it then? Neurologist replied " you asked us to find something we did its vit d deficiency, I don’t need to see you again" so I stumbled back out in tears, that was Feb, I’ve had vit d replacement, b12 injections, iron tablets, my days are pained at times I can’t walk, struggle with stairs, can’t turn over in bed, stand for long walk without sticks, drive more than 5 mins without horrific rib pain, I can’t look after my two children or work… It’s late I can’t sleep again despite fatigue, I’m to hot cold or itchy … I’m so lost … I know you can’t diagnose me apparently even Drs can’t but what do I do now? Is m.s still a possibility? :(((( thanks for listening X
hi mrs F
well what dose of Vit D has your neuro told you to take?
i often forget to take mine. Duh!
i recognise your symptoms - not being able to turn over in bed, too hot/too cold, itching.
have you got an ms nurse?
if you have, give her/him a call to ask if your vit D is a high enough dose.
how long will it take to ease your symptoms?
ms could still be a possibility, as could a number of other conditions.
it’s not a pretty thing to have but a diagnosis of ms at least lets you know what you are fighting.
so meanwhile try to ease your discomfort.
a spray called Magicool is good for when you are too hot.
wear layers so you can take some off if you’re too hot, put more on if too cold.
don’t be shy about asking for help with your children - friends and family will probably be eager to help.
give yourself a treat to look forward to.
i love going to a little cafe at a local marina, where the food is delicious, the scenery is beautiful and the price is very cheap.
so that’s ,my treat for today.
please dry your eyes, you will get through this.
carole x
ps F.I.S.H. is a useful phrase for times when it gets too much (F**k It Sh*t Happens)
Thanks Carole for reply, I finished the vitamin d was 40,000 for 2 months then 4 weeks at 1600 daily, when I finished that they said (gp) didn’t need anymore as it was within normal boundaries, have no m.s diagnosis or nurse, and have had tests for lupus, looking for cancer, tumours, Hughes, diabetes, sjorgens syndrome, to name but a few… Just feel exhausted and getting to tired to keep pushing for answers xx enjoy your treat xx
Hi, my problems began when I was 45…now 64…falls, bladder and bowel accidents…
I presented as typical PPMS, but none of the myriad of tests ever proved it. It was suspected but not diagnosed, then only 95% PPMS diagnosis later.
Suddenly a new neuro said it wasnt MS at all, but HSP…hereditary spastic paraparesis.
It is very MS like, but caused by mutant genes and has a different long term effect.
Incurable, untreatable, but there you are.
I have recently asked for genetic testing, as there is no proof of HSP…not seen in my family.
Ask about this eh?
pollx
Thanks poll,
Christ I’ve never heard of that before, I don’t want to keep going on about it, even had one comment " do you actually want it to be m.s?" of course I don’t… But I know there is something wrong- you can see it in my walk, stagger, gait, I’ve had so many tests, taken all recommended pills lotions potions and it’s getting worse there was a brief 3-4 weeks of symptoms easing off but now it’s back to square one… My husband put me to bed at 6 last night after me legs went to jelly couldn’t stand, as we struggled up the stairs me in tears I just wanted the Drs to see me and shout " look look at me- don’t tell me it’s nothing!" …
Get a second opinion at a diff hospital. Just walk in and they will see you. Good luck!
I know its boring me harping on but it took me TEN YEARS to get diagnosis. Without test results you wont be told MS I am afraid.
I would think the one thing i would be interested in is why B12 defiency? This is not normal in healthy people. Usually you see this when someone has auto immune issues.
At least you are having tests for Lupus etc. Now my first lupus test was POSITIVE, but six weeks later it came back negative yet only in 2012 i had RA titers very high from a private clinic but the GP i have wasnt interested. Also i had low B12 according to this private clinic who has high standings, and yet the GP on NHS said it was in normal range, so makes you wonder what the NHS normal range actually is.
I decided to just get on with life, and found ways to cope on my own, i ate a really good diet, and paced myself. This could be M.E. you know it does have similar symptoms and can come on quickly. Did you ever have a virus recently?
Sit down with your husband and really think back to when it started. There is usually a clue there. Mine was 2000 going blind twice, which was ignored by our NHS doctors lol. Yep. But i can trace all kinds of things and a strong timeline.
I was lucky as after persisitent tests i had positives on VEP and MRI, a crazy result on my LP, and finally another positive VEP.
I would PAY for your medical notes it costs 50.00 is really useful, as even though i was told my MRI were clear i found letters showing over a few years they found 3 different cord lesions in different places and my VEP showed i had bilateral optical neuritis. Oh and other things i didnt even know i had lol.
Also if you can afford it, take a trip to Breakspeare Clinic and have bloods done on Lymes and other things, i did, they found i had met Lymes (NHS refuted results as per usual even though the testing Lab is the best in the world IGENEX in the states, and also that i had latent epstein barr virus and 2 other crazy viruses which were showing high titers but not active). The doctor said there she was amazed i was still working lol.
Anyway dont give up, dont focus on MS though, this could be a lot of things. My mantra is this IF IT IS MS IT WILL FINALLY SHOW ITSELF…and mine did. So just concentrate for now on a timeline, eat healthy, pace yourself, and wait for all your results to come in. B12 is not something for the healthy, so you can rest assured something is going on. xxx
Am currently in patient in hospital awaiting MRI 2 morrow ( fingers crossed), thanks crazy chick for your reply, I’m trying not to focus on m,s but have a few possibilities symptoms match- more tests so will just wait again 
hope your all ass well as can be xx