Hi everyone I have been hiding in the shadows for a while and reading everyone’s posts so thought I should finally step in to the light. I’m 31 and for the last 10 years I had numerous trips to the GP querying that I must be B12 deficient or have a thyroid problem midwife trained so didn’t have a problem going in and asking they test me and also had family history of thyroid problems. Tests always came back normal and my texhaustion was always put down to being at Uni, having a child or working shifts which was reasonable but I didn’t agree. Over the years noticed things like being clumsy, I always joked about lacking special awareness and seemingly tripping over myself and stumbling over nothing. July 2013 started with burning, pins and needles, cold, skin crawling, numbness sensations which will not go away. GP tested for thyroid problems, b12 deficiency, diabetes, u and e, liver function and calcium levels - all normal so referred me to neuro. Had my initial appointment in November she found brisk reflexes down my left side and loss of sensation across large areas of my body but no muscle weakness and my eyes followed her finger ok - that was her exam complete. Soooooo she sent me for an MRI which I had Saturday 4th and I’ve got a neuro physical eye test 17th feb as had one episode of blurred vision. She started me on amitryptiline now on 30mg od. It has slightly dumbed down sensation but still waking overnight with really heavy dead arms and increased pins and needles even if laid flat on back, hot shower, gym and horse riding make it worse. Have noticed some heaviness in legs when sitting on my horse and trying to slip feet into saddle which is a new symptom. My neurologist says she has in her whole career only seen one person present like me who had MS. When asked what else it could be she was vague, mumbled and when probed said it could be my body recovering from a virus. When I questioned this as hadn’t been unwell she mumbled further and said I would be seen again in 3 months so end of feb ish and that depending on MRI may need a lumber puncture. So I feel confused and like I’m stood on the edge of a ledge unable to look down unsure if there is a step below or a sheer drop. Anyway thanks for reading feel a little better getting it all down in writing
Hi there,
b12 defiency is hard to test for. If you are taking supplements the figures can be distorted. I have read books and sometimes the best way to find out if you are defiecient is to get the injections and see if they help. My B12 was low but the neuro told me that it would not cause a lesion on the cord. He gave me 3 monthly B12 injections and I always felt realy good with no pins and needles for 3 days afterwards. Then I read that B12 defiency can cause sub acute combined degeneration of the cord which appears as lesions.I have loads of the symtoms of B12 defiencey - yawning, breathlessness fatigue.The neurp wanted to give me a MS dx but after a clear brain MRI and LP he couldnt so came up with the fact that I had radiation damage from treatment I had in 1990 even though I had a clear scan in 2005! The scan in 2011 showed one lesion on cervical cord.
I am currently giving myself B12 nasal drops and now get B12injections monthly. It is really helping although I do have spasticity in my right leg muscles . I also have overactive reflex in that leg too. Left leg is normal.
I have discoved that if I take extra B12 before I go to bed I dont wake up with pins and needles in my hands in the morning. I have been having this since 1988. (was told it was mild carpel tunnel)
Moyna xxx
Hi there I have had very similar symptoms to you. Had a short hospital stay where they did mri of head and neck both which were ok. Neurologist said likely virus that has attacked nervous system rather than ms which is what they had been thinking. 5 weeks on still have back and leg pain as well as near constant pins and needles in the legs and a few bladder issues. Anyway dr has put me on amitriptalyne and is now looking towards fibromyalgia. He said as the pain as been ocurring in different places it would point towards fibro. However still at the early stages so could well end up something different again. So from what i gather it is all a process of elimination rather than symptoms pointing towards a certain diagnosis.
It’s so frustrating as impacting on life now. I have never taken b12 supplements and tests for years have always shown no deficiency and nowhere near the lower end of normal either. Had the sensations for 6 months now 
guess I will maybe know more after MRI results as to whether there are any lesions or not. She said the tests the GP had done had ruled out a lot of conditions. Hope you get answers too. Like you say process of elimination but would be good to know more especially as we were trying for a baby that has been put on hold since the strange symptoms I don’t want to run out of time especially as already have a 13yr old feeling a little sorry for myself
Hi Daisy
I’m surprised that your neuro said she had not seen your type of symptoms before. I’ve just been diagnosed as having RRMS and have had exactly your symptoms on and off for several years now. Burning sensations in leg and bum muscles, pins and needles, a feeling of water being poured on my thighs, numbness, etc. All really feels really weird, but these are fairly typical MS symptoms.
The most annoying/worrying thing at the moment is the pins and needles at night. Like you I wake each night with dead arms and the pins and needles start in my arms and legs within minutes of me lying down. I’ve increased the amitriptyline to 50mg each night which I have to take fairly early (by 7pm) or I find it really difficult to get up to my children and work in the morning!
I’m experimenting with different sizes/shapes/numbers of pillows each night, to see if I can find a solution, as not sleeping at night due to numbness and pins and needles is really depressing. If I could only get a decent night’s sleep I feel I could face whatever new symptoms MS throws at me during the day, but with so little sleep, it makes things difficult to cope with.
If you come up with any ideas, I’d love to hear them.
Tia
Hi Tia Glad it’s not just me with the pillows!! I’m in to aromatherapy having used it for years as a midwife and seen the benefits so I’m going to dig my book out this weekend and see what I can find that may help. Only concern would be not using oils with too sedating properties alongside the meds or I may not be able to get up in the morning. Like you I have to take it mid evening. Doubt neurologist will be very pro alternative therapies. I’ve also read up on swank diet and decided to give that a go if nothing else hopefully it will stop me eating so much cake! Have also tried keeping bedroom cool and bedding light in the home of keeping body temp lower as getting warm seems to aggravate it. Hope we can both find something that works and get a good night sleep!