Some friendly advice please??

Brain and nerves
1

I had a hit to the head a few years ago and have been stuttering ever since and experiencing mind blanks... Not constantly, more inconsistently and at random - it comes on in spells, will stay for a week or so and then clear and I feel fine again, like I imagined it

(when stressed and tired it's worse)

Can go weeks without it and then out of the blue it just starts up again. Originally I was diagnosed with post concussion syndrome but was told this should clear up within 12weeks which it has not.

For the past year or so, in addition to the stutter and mind blanks I have been struggling with balance and my legs jerking... This is worse of an evening and when rested but does happen all day throughout the day also... Again at random, can go weeks without it and then it starts up again, somedays very vigorous and unbearable.

In most recent weeks I have also been jerking my body and head! And also making involuntary noises.

I am tired always and certain tasks exhaust me, babysitting my nephew will leave me a stuttering, jerking, sleepy mess and I just need my bed by 5pm, at 25 this task shouldn't be so exhausting?

I recently went on a city break and after a day exploring the city, I had to find somewhere to rest and have a sleep on my partners lap in the middle of the town centre as the transfer wasn't taking us back to the hotel until 7pm and I was exhausted

My attention span is diminishing and I often find myself staring at my pc wondering what I'm doing and it'll take me a couple of minutes to remember and continue.

I seem to have a heat intolerance! In a room with others who deem the temperature normal, I have to step outside for fresh air... I went to visit family and there were a few of us sitting in the living room and I kept having to go to the toilet to stick my head out of the window whilst they were contemplating putting the heating on!

I've seen a number of doctors who have taken lots of blood and offered me antidepressants or a sick note off work but that's about all they put it down to... I've gone back and have seen a better doctor recently who is referring me to a neurologist... When the neurologist read my notes he requested an MRI for my head and spine which I'm still awaiting the appointment for (in two weeks). After researching my symptoms Google always brings me to Ms but I am not experiencing pain?

I feel stupid attempting to self diagnose and my family think I'm mad but I am very aware that something isn't right here!?

2

Hello

Sorry to hear of your problems.  You really shouldn't get in such a state of anxiety whilst awaiting MRI because you will know nothing until then.  Remember you will also have to wait for this result.  Doesn't sound like MS but does sound more like the symptoms of  Parkinson's disease.  Ask your GP about this.

Good luck.

3

I think the anxiety comes from lack of knowledge of what's going on... I have been referred to neurology for a scan and I have no idea what they are even looking for or what their suspicions are? The doctors give nothing away and I am just left waiting, wondering and googling which only panics me more!

This has been going on for years now, I'm grateful that the processes are being made and we're heading towards a diagnosis I am just anticipating the worst at this stage when I really need to sit tight and be patient.

Thank you for your response :-)

4

hi mic,

i'm sorry that you're having such a distressing series of health problems. i remember what it was like before i was diagnosed with ms, and didn't know what was happening to me.  

first of all, it's possible that you have ms, but by no means is this a certainty. some of your symtoms do happen to people with ms (PWMS), unfortunately, we (PWMS) have such differing experiences with the condition. because the nervous system is so complex, so are the list of possible outcomes. 

keep a written record of your experiences, ie dates, symptoms, effects, duration and anything else you feel is relevant. this is always useful when  attending any medical appointments. whenever possible, take a person to any appointments, as it helps to have someone else to listen and for support. try to find some kind of relaxation exercises that work for you, this would be useful for anyone, and particularly helpful for PWMS, and for you as you're dealing with a stressful set of experiences.

a few points about your post: you mention leg jerks, try  reading up about 'restless leg syndrome', see if that rings any bells. i have this, and when it's happening, it's torturous. if you think that it might be this, i was recently told about taking magnesium supplement tablets. i can't use them myself, but apparently it can really work well to eliminate the symptom. speak to a pharmacist first, to see if they're ok with any other meds you may take. you mention that your research always leads you back to ms, but that you don't have any pain, i'm glad that you don't have any pain, but in ms, only 10% of us have chronic pain symptoms. if they are testing you for ms, the usual way that this is done is to not only do one set of MRI's, (which would be a strong indicator only if there was substantially visible myelin damage) but to do another set, some time later, to show progression over space and time. the other, major diagnostic tool, for ms, is to do a lumbar puncture, to look for oligoclonic bands, in the cerebrospinal fluid sample. they might also do an 'evoked potential test' to see what your visual responses are like. this just involves gluing wires to your scalp that read how your brain reacts while you watch something bouncing around a computer screen

if anyone on here tells you that vitamin D supplements stop ms symptoms, the NHS states on it's website that: there is NO evidence of there being any such effect!

in 2012, i had emergency brain surgery, to clip a ruptured aneurism that was causing a haemorrhagic stroke, it was touch and go, apparently. at the time, and for several weeks, i was off with the pixies, so i missed all the horror show that my daughter felt the full brunt of. it took a long time to recover, as any kind of brain injury does, so i understand what you're going through in a variety of ways.

i hope you get bsome answers soon, good luck.

if i were you, i'd contact your neurologists PA. ask what it is that you're being tested for, this might go some way as to alleviate at least a little of your stress