MRI SCAN having to be redone

[Worsleybird]

Hi guys, hope everyone is feeling ok with our ongoing struggle against this brutal and horrible disease.
Last Thursday night at 7.30 pm my consultant rang to say I had moved during my MRI neck and spine scan in September and the scan had to be redone. He then muttered something about ''external agencies'' and ''possible spinal cord degeneration'' finishing off with ''but nothing to worry about''. Needless to say I fell to pieces and that was my evening ruined.

I have submitted a claim for a payout under my life insurance policy and wondered cynically whether they had looked at my MRI and found it wasnt up to scratch? The MRI was done in early September and from previous MRIs when I have moved the operator has noticed and asked me to be still whilst they reran that particular part.

I am now worried as I have bulbar MND and there is nothing wrong with my limbs at the moment.

Any comments ? What do people think ?

[matthew55]

You will get used to being scanned, enjoy it while it lasts.

[Ellie]

Worsleybird Spinal cord degeneration is part of ALS, although there are other causes too.

Is it that you don't see the point in another MRI? I presume you had an EMG - was it on a limb? xx

[Worsleybird]

Hi Ellie, I had a nerve conduction test in July and was told by tongue was affected but little information given to me. To be honest Im really confused with it all, feel like I've been left standing at the station and the train has departed leaving me on the platform in a cloud of smoke. Was diagnosed as Bulbar Palsy or Pseudobulbar Palsy is that the same as ALS?

[Ellie]

Was diagnosed as Bulbar Palsy or Pseudobulbar Palsy is that the same as ALS?

Pseudobulbar Palsy affects the upper motor neurons only - ALS affects both upper and lower motor neurons (UMN & LMN) so is a PLS-type disorder.

If the "Bulbar Palsy" is deemed to be progressive, that means both UMNs & LMNs are involved, and is ALS.

I know it must be very frustrating to know that you fit somewhere on the motor neuron disorder spectrum but don't neatly fit into a diagnostic box, and everything is taking too long, but that's usually a positive thing when it comes to a prognosis, little comfort though that is to anybody (we just want to be healthy!) xx

[Worsleybird]

Thanks Ellie, I guess it is just a waiting game, after the spinal MRI to see what happens next and then if spinal cord degeneration I would be both?
I'm learning more about MND through this board and yourself than my consultant.

I think my voice over 8 months has definitely got worse people can just about understand what I am saying if they make the effort, some not unfortunately.

[Ellie]

The MRI scan results might be another piece fitting into the jigsaw puzzle.

Spinal cord degeneration can signify LMN damage which may be ALS-related.