4 years ago
The long road

Hi, so I’m a 25 year old, fit and healthy women, who has for the last 7 or so years been plagued by a variety of a strange symptoms. I have constant muscle twitching, pins and needles/pricking/tingling in my feet, numbness in toes, loss of balance, shooting pains to name a few. I have been diagnosed with a bit b12 deficiency for a few years and have injections every 3 months. No doctor has ever told me why I have this. So the reason I am on here is my fear. My fear is that I have done something to myself all these years, I have ignored symptoms and got on with Uni/life and convinced myself that I am imagining it and its jot really happening… I moved to a new area this year and a new doctor couldn’t understand why no more investigation was done and sent me to a neurologist. I am waiting for my mri (next week)… The more I read, the more I am convinced that I have ms. I feel in limbo, no knowing what I have and why. I feel guilty because I have done nothing about it. I feel guilty because I have days where I can’t cope. Has any one been through a similar experience? I feel like I’m going mad. Thanks X

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i currently am on the same road as yourself. i have been under a neurologist who turned round and said i was just tired. in november 2011 i had a stroke and things have got worse from there, i am currently waiting for a professor to arrange an appointment as my gp and myself and also my urologist feel i have ms, the more investigation and people i speak to make me think i have ms. i have two young children and i hate what this is doing to them let alone me one day i am ok the next i cant string a sentence together. i hate the waiting i just want a diagnosis then i can hopefully get on with my life!!!!!!????? thanks x

@jasminefairy & @alaz2906, MS is notoriously difficult to diagnose as the symptoms are shared with so many conditions from a vitamin deficiency onwards.
Given the neurological symptoms that you both have, then a Neurologist is the person best placed to get to the bottom of things.
They will perform some standard neuro tests, e.g. reflexes and walking. They’ll also ask for your medical history, of symptoms that you have experienced. They’ll then call for further tests to provide further pieces of your personal jigsaw. An MRI scan of brain, and possibly the spine, with or without contrast, gives the Neuro a visual image of what’s going on. They might call for further tests if this is not conclusive.
So, it can be a frustrating journey.
You have to be patient. But, be kind to yourself too. Worry and stress will only make any problem worse.
You’ll get your answers once the Neuro can piece the bits together to give them a definitive picture.
Hope this helps.

Thanks 🙂 I know it will be reason end eventually. I think that it’s only because now, after the neuro physical tests/ blood work, the next step is the mri. That scares me the most. It just makes it real some how. X

@jasminefairy, every one is scared of the future, because it’s an unknown quantity. But, nothing can be achieved if one’s head is buried in the sand.
Denial, that anything is going on, just prevents you from moving on. You know that something isn’t quite right, so would a name make you feel any better or worse.
The MRI is not everyone’s “cup of tea”. It can feel claustrophobic and it is noisy in operation. You just need to lay still for the duration, which may be up to 40 minutes. If you have any concerns, do speak up as the MRI operators will have dealt with all manner of patient issues.
Once you find out what’s troubling you, you’ll be better placed to manage it.

Thank you. I am a positive person, so I do know that whatever I come across, I will be ok. Knowing will help, even if to reassure me that I’m not imagining it. Also I’m a teacher, so it will help to give a reason for my fatigue etc, not just because I’m Knackered ! X

@jasminefairy, well we’ve got members that have been through this process, which we term “limboland”. We’ve also got members in the teaching profession.
So, voice your concerns and I’m sure someone will have a view, or the experience, to help.
Just take it easy in the interim. Listen to your body, if it says I’m tired, give it a rest. And, maintain that positive attitude. That’s a great plus in your favour.

Hi Jasminefairy and welcome to our little corner of the web. Without wanting to appear in any way trite or patronising, Stumbler has just given you the two most important bits of advice you’re likely to get from anybody.

Firstly, that “listen to your body” one. If you’re anything like me, (and if it turns out that you have MS you probably are) then exhausting yourself will be your absolute worst enemy. My symptoms are quite happy to hide beneath the surface until I reach the end of my reserves, when they’re just busting to get out.

And that “maintain that positive attitude” one. It’s more abstract than the first, more difficult to pinpoint the how and why. But anecdotal evidence suggests that a PMA will be your biggest friend when it comes to dealing with your MS. My clinical nurse reckons that she can predict within a few minutes of meeting a new patient how they’re going to cope with the future simply by looking at their their aura (well she doesn’t actually say that as she’s not a hippy, but you know what I mean!)

It sounds as if your diagnosis process is now moving in the right direction again. Don’t be worried about the MRI – it’s noisy and a bit claustrophobic – but that’s all, and for me it was the final piece in the puzzle for my DX, and that final diagnosis had a strangely calming effect once it was delivered!

You’ve come to the right place. Over the last year (since my DX) shift.ms and the people I’ve met and talked to here has been an immense help. Because at the end of the day (to use a poker analogy) MS is a crap hand. But it’s not unplayable.

See you around…


@jasminefairy: don’t beat yourself. You are doing something NOW. Also till you have a diagnosis in your hot little hand, don’t assume you DO have MS. Quite a few on here doing that….you only have MS if you diagnosed by a neurolagist.
Now I forsee loads o folks disagreeing wiv me there, but well, you ain’t gonna get squat in the way of help, UNLESS you DO have the “official bit of paper”. And life ain’t over. Yu just have to adapt. Keep Calm And Carry ON!!!!!!!!!!

Thanks for the help. My nuerologist has prescribed me with gabapentin, but u haven’t taken it yet. I had a reaction to amitryptaline a few years ago which have me tachycardia, so as you can amazing I’m a little weary of taking new drugs. I have heard a few horror stories about gabapentin, has anyone taken it and have any good things to say? I don’t know whether to try it or not x

Stupid iPhone! Was meant to say ‘I’ haven’t taken it and as you can ‘imagine’ x

@jasminefairy, Gabapentin is prescribed for neuropathic pain, although it’s actually an anti-epilepsy drug. If this causes problems to you, then there is Pregabelen, which may be better tolerated.
So, apart from a script, did the Neuro/nurse give you any grounds for comfort on your other issues?

No, unfortunately not. He seemed baffled, which isn’t reassuring. He said that he didn’t think my symptoms where to do with the b12 deficiency ( which was always my reasoning/answer) he said that we would do some blood test and a nerve conduction test to rule things out, then an mri if he couldn’t find anything through those. I haven’t been told any results but have had no nerve conduction test appointment, only th mri. All these things worry me in to thinking that he is only looking for one thing. I try not to be self diagnosising, but it’s hard when nobody seems to have an answer. X

I think the Neuro was understandably reticent as they don’t have enough information to offer any diagnosis. So, they have offered you some pain relief, whilst they get further information to allow them to contemplate a diagnosis.
As I’ve said, your presenting symptoms could be caused by an array of conditions, so you don’t want the Neuro to guess.
Be patient. The MRI will give them a lot more information and may be conclusive.
But, be kind to yourself too.

Thanks again for the advice, it helps. I’m remaining positive untill I know the results of the mri, I can’t keep guessing, what good is that. For now I need to keep well. Been sent home from work. I have a cold, but that has made my usual symptoms 10 times worse. It’s hard to teach when you need to hold on to something to stop yourself falling over! 🙂

@jasminefairy, just out of interest, are you eligible for a flu jab, due to your profession?
The reason I ask is that if your condition is auto-immune related, then other infections, e.g. flu, could give you a double-whammy. So, a flu jab is a sensible form of defence at this time of year.
Otherwise, remain philosophical, whilst the Neuro pieces your jigsaw puzzle together.

I have had the flu jab this year, the first time I have been offerered it though. Dr said it was because of the weak immune system with having b12 deficiency. I don’t know if it is relevant, but I also have been told I have vitamin d deficiency, but don’t actually take anything for that. Some days I feel like my body is failing me, other days I can run 5miles! Madness really x

@jasminefairy, a vitamin D deficiency wouldn’t surprise me. Most of the UK population seem to be deficient in Vitamin D3, which should be obtained via sunlight through the skin – do you remember sunlight? 😆
Recently, the Recommended Daily Allowance (RDA) has been increased from the wholly inadequate 400iu. And, as you’ve probably seen, we have members, who are now taking 5000iu a day.
I should have a word with your Doctor on this issue to see whether you should be taking a supplement?

Sunlight, oh yes, I remember that from long ago! I will dose myself up as much as possible. Now I have to stop feeling guilty about my body not functioning adequately enough to work and just rest! 🙂

@jasminefairy, agreed on every point you make, especially about not feeling guilty. 🙂

i am under a neurologist and have been so for some time, my neurologist is rude and feels i have nothing but exhaustion, i am currently waiting for a professor in ms, but i know my own body and i know something is wrong with me more than exhaustion!!! i have every symptom that i have researched and i feel in myself my gut is telling me its ms but the problem is no one listens!!! what am i to do now please help????!!!!!

@alaz2906, I can see that this situation is frustrating to say the least. Has this Neuro called for any tests to help determine your condition, e.g. an MRI scan?
Your GP is your Primary Care Provider, so they should be able to arrange, and push for, a second opinion, especially as they are suspicious of your underlying condition.
You could also look at this website :- http://www.pals.nhs.uk/ They may be able to help too, but see what your GP suggests first and discuss PALS with them and see what they think.
Hope this helps.

@jasminefairy I really relate to your story!! I am also a 25 year old female who is fit and healthy. I also have had bouts of strange health things that was chalked up to a b12 defiency for the past 4 years. Finally a doctor asked why it was never investigated as to WHY i had a b12 deficiency and eventually the symptoms forced me to investigate and it turns out i do have relasping remitting MS. Now do not get me wrong.. i PANICKED when i found out… but now that the dust has settled i have realized life goes on and life is still good and things will be ok. Alot of people continue normal function with MS or have to adapt slightly but it is not life ending. IF it is MS you will be ok. If you ever want to chat feel free to msg me 🙂

All the best!

Wow @mrshawk ! It seems very surreal to think that anyone is feeling the same as me! I have had endoscopy and all sorts of tests to find out why I have b12 deficiency but no answers. Did you have nerve symptoms? How did they diagnose you? For my diagnosis wouldn’t be a negative thing it would relieve me of the feelings of guilt and hypochondria! I have stumbled (literally sometimes!) like this for so long now. I would be really interested to know how you got to your diagnosis xx

@jasminefairy my first attack that led me to being diagnosed with B12 defiency was dizzy spells that caused me to black out… this happened over a 6 week episode… they checked my heart etc and could only come up with b12 deficiency so thus i started on the shots…. 2 years later i was out for breakfast and thought the waitress behind me spilt hot coffee down my back and i jumped… except noone spilled anything on me and for the next month or so i had this intermittent hot/wet sensation… i chalked it up to a pinched nerve…i also always felt so tired and that i figured was a b12 issue… this past May was the attack that led to my diagnosis… i woke up with tingling in my feet and hands… it persisted… then i got lhermittes (intensified tingling when bending my neck forward) i push for an MRI and discovered 6 leisons.. 3 on my brain and 3 in my neck and thus the diagnosis was made. I started immediately on medication and have been doing well since. let me know if you have any other questions!

Thanks for the reply, it’s really interesting. I have had the same symptoms for about 7 years, I have good times where I don’t notices them as much and then I have bad days where I constantly twitch, have shooting pains in arms legs, tinging/pricking on the bottoms of my feet like a sharp hairbrush is rolled over them. I have numbness in my toes, couldn’t feel the sharp test that the neurologist did. I have balance problems and when eyes are closed I fall over. I have passed out on occasions, but that has always been out down to anaemia/b12… I guess there are a millions things going on with my body and not one thing that know is the cause. Does any of that fit with you? X

Really excellent advice here. Just want to add one thing which I have realised over the years since I was diagnosed: if it is MS you’ll do best if the medical support you get is strong. There is a HUGE amount of help for the symptoms of MS, but it seems to be a postcode lottery in that not everyone gets it automatically for whatever reason. You may have to push for what you’re entitled to – whether it’s the right drugs, referral to clinics, counselling – whatever. So expect loads of support and if it’s not forthcoming, make a fuss till you get it. xxxx

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