So I saw my neurologist for the results of my brain/spine MRI and it is not MS, which was a big relief.
The next step is to have some further tests - SSRE and nerve conduction. He used the analogy that the hardware is ok so next we have to check the ‘circuit board’ system. He will add me to his NHS patient list for this so its likely they’ll be a bit of wait now. He also mentioned that the other thing to consider is that the symptoms may have a metabolic cause - not sure what this means really? He did say that earlier (childhood) signs would more likely have been evident in this case.
Alternatively this could be stress related but my physical symptoms are very real. My husband thinks the consultant is angling toward this as he picked up on my nervousness during the consultations. In reality my feeling is that you are going to be nervous/anxious as have no idea what is going on especially when he holds the ‘power’ in the relationship. I have been under a lot of stress over the last few years but I’ve never had any physical manifestation of symptoms like this before and would it really affect my ability to walk/cause numbess/weakness… who knows… I do know that the mind/body are interlinked but in a way its seems more valid if it is something that has happened to you, rather than in spite of you if you see what I mean. If anyone else has been in a similar situation, I’d appreciate your thoughts.
Anyway thought I’d update and hope you are all doing ok.
How are you feeling. I think ssep was part of my electrical tests last week. The electrodes that feel like those mosquito itch stoppers. It’s a weird test. I had the emg too. Like tiny needles monitoring muscle activity. I also had what I now know is tms studies too. The paddle to the skull giving electrical shocks.
Chances are you will get more than just the ssep. I was referred just for emg but I think they used all the toys in the room on me. Maybe that’s normal or maybe because the results of one bit meant they wanted to do more.
It wasn’t a fun hour. But it’s certainly handleable. Jumpy and Unrelaxing but not painful.
I’ve hassled my neurosurgeon’s sec. She emailed today to say the results are in and he’ll be writing to me tnrw. I’m not anticipating any clear explanations. I suspect I’ll be referred to a neurologist. Which is probably where I should’ve gone in the first place. But when the gp thought trapped nerve it went in the surgeon direction hey ho
When I woke this morning I realised my hand was really gnarled up. Totally spasmed. I wonder if it does that all night. A pretty horrible thought. I’ve only really experienced it spasm with yawns early morning and in bed as I go asleep. ( or in boring meetings). In bed I tend to jam it between my thighs or under a pillow to stop it.
Ive wondered about the stress impact too. I am v stressy. A depressive. Defined by grief at times it seems and pre xnas was Groundhog Day hell with some family issues that were too much to bear. My symptoms started the first week of Jan. It’s possible. But as real as physical responses are. How to fix them if they are ‘merely’ psychosomatic. Not easy
Who isnt nervous in such an appointment. Esp if you are going thinking a life limiting disease is about to be revealed?? Context. Expectation. Ha. I remember my first smear. The nurse had to yank my legs apart. I was so tense. She said you seem unable to relax. Are you like this during sex??? Er seriously?? The two scenarios hardly compare. Unless sex play involves instruments and an angle poise!
Oh yes, I’m sure I would feel just the same in your shoes.
Viewed dispassionately, of course, there’s no question that anyone in her right mind would take symptoms of unknown origin (life-threatening options having been eliminated) over symptoms caused by a chronic progressive neurological disorder like MS. For as long as there is a glimmer of a chance that whatever is the matter just might go away, never to return, then hurrah for that and long live hope.
You know all that, of course, and I know it doesn’t help how you are feeling right now. When answers to health problems are in short supply, it is always tempting to over-think (what did the neurologist’s raised right eyebrow signify, exactly…? etc). Resist if you can - it’s the road to sleepless nights without helping one jot, and I’ve had those sleepless nights in my time, believe me.
As far as you can, just try to take a deep breath, get on with life and let the thing play out and take as small a toll on your nerves as you can manage.
Thanks Tilly. It’s good to get an outline of what to expect. Funny you mentioning about your hand as mine does this at times too, usually when I’m sitting watching television. I look down and my hand has contorted itself into such a strange shape I have to literally prize my fingers back to their normal position.
Good luck with your own answers too.
In terms of bloods GP already done several including inflammatory markers, rheumatoid factor, glucose and thyroid I believe.
Thank you Alison. On reflection I was perhaps being insensitive writing something like this on an MS thread and I apologise if anyone might have been offended by my comment. I am grateful not to have a progressive condition but in some way I feel if all this is stress related then the source is more internal (ie perhaps I could have avoided it) than external.
Your advice not to second guess and overthink is sage. Thank you.
Crumbs, Jane, you were not being insensitive in the slightest degree, and I am sorry if my comment came over as suggesting otherwise - that was certainly not my intention.
There is no censorship of feelings on here, and in my experience on here, people just want to support each other, not to take offence, so there’s no need to walk on egg-shells - we all have our troubles and it isn’t a competitive sport.
In any case the view that ‘there is always someone worse off’ never helped anyone yet, did it? There is someone worse off than every single one of us except for one poor soul somewhere on earth for whom that is not literally true!
No, your comment didn’t at all and thanks for acknowledging my self-centred need to voice my feelings. This thread is such a great support and with everyone’s agreement, its somewhere I’d like to stay for now as feel its a place I can be honest (and maybe help others too with my own experience.