Confused now and general grumble - newbie

New diagnosis and before diagnosis
1

Sorry if this all comes over as a bit of a rant, I’ve been stalking for while J and hope you won’t mind.

I started to develop very tight leg muscles last October or and was told by a physio in January I had hamstring tendinopathy. In April I developed buzzy calves/ pins and needles in legs (along with the calf/hamstring pull feeling I have had since January –nerve pain on stretching always) so I went to the doctor. As I had until January been very active (running/circuit training etc) he referred me to an orthopaedic physio.

However over the next week I developed an incredibly tight back and got burning sensations in my upper arms and back, and it got up to the edges of my face, I obviously went back to the GP who still sent me to the orthopaedic physio. I’ve also had other things like a compressed feeling in my legs, and very aggressive spider tickles on my feet/tummy/head and nose of all places. I also haven’t slept well since January though whether this is due to the neuropathy/stress or anything else I really couldn’t say, I wake up sometime between 2.30 and 4am all the time, I wouldn’t say I was fatigued as such just in desperate need of a good nights sleep all the time.

Though I felt like I was coming down with flu for 3 weeks, thankfully a lot of the grottyness slowly wore off and I feel awful moaning, there are obviously a lot of people here a lot worse off than me.

Anyhow I finally got to the physio in July and she sent me for a thoracic spine MRI and referred me to a neurologist.

I got the results of the MRI today and I have a grade 1 lumbarsacroal bulge (or something, the absolutely lovely physio is going to send me a copy of the report and chase up the neuro appointment) at L1/S5 which could account for the lower body symptoms but not the upper. I’m 43 and to be honest I tend to think that all the exercise and excess weight I carried for several years caused this and it isn’t responsible for everything I’m experiencing. Anyhow I’m getting referred to a neurosurgeon for a second opinion. The Physio has so made up for the completely useless GP, though I’m going to have to learn to be a bit more pushy about these things I think.

Obviously I’m thankful that there were no lesions on the MRI (I should explain I actually work in neuroscience on the research side – on motor neurone disease of all things – I just know a bit too much while not being medical) I don’t know what to think really.

I know I have to sit it out and wait and see what the neurologist/neurosurgeon says but it’s really mind numbingly difficult to not worry all the time.

Anyhow thank you for listening at my not so brief moan.

2

Hello, I have no advice but just wanted to say welcome - everyone here is lovely. I’m quite new too and my background is quite similar - running/circuits/spinning - my symptoms also started in my legs and I was told it was probably nerve compression. Symptoms then spread to my hands and arms. I have my first neuro appointment on Friday. It is really frustrating all this waiting around in limbo but everyone here is so friendly and supportive it helps ease the strain. Let us know how you get on.

3

thank you, and i’m sure i’ll need to be exasperated again at some point :slight_smile:

And let us know how you get on too

4

thank you, and i’m sure i’ll need to be exasperated again at some point :slight_smile:

And let us know how you get on too

5

Hey! A fellow MRI geek

Welcome

You’ve made a very important discovery through all of this: you have to be assertive! Knowing that will stand you in good stead over the coming months.

Neurosurgeons are usually very loath to get involved in neurology so you may find yourself with another referral to look for causes of your upper body symptoms if a cervical scan doesn’t show up a cause. If this happens, could you nick a bit of scanning time in your lab to do a brain scan? It would certainly speed things up! (All you need is a 3mm T1 and a 3mm FLAIR, preferably in two orientations.)

Try not to be scared. There are loads of possible reasons for your upper body symptoms and a lot of them are treatable.

Hang in there.

Karen x

6

Hi

Yes i definately have to moan at the right people! If i don’t hear anything about the neuro appointment in 10 days I will go back to the GPs and make a fuss about pushing it through.

I’ve worked with and for medics for 15 years so i unfortunately know what some of them can be like, fingers crossed for a helpful one.

If push come to shove my boss said he could ask if i can get put throught the research MRI scanners as we collaborate with a lot of imaging people (though they work on dementia - thankfully haven’t got that), so i can always hold that in reserve.

Thank you!