[Rosalind]

I love your attitude, no wonder you have  accomplished so much and seen so much. I  retired at 59 becasue I realised I was no longer  able to analyse, think ,  plan, decide at my usual level. Had no idea what was wrong but  its given me so much time to enjoy things too. Travelling and tramping here in nz and overseas. Will definetley look out your book – wonerful you have written it. Love the title. very apt as on  my last relapse when I was camping and travelling I got episodes of  drunk feeling and stumbled a bit etc.  Good on you , Thanks Rosalind

[Rosalind]

thanks Ed,  Oh wow you are indeed the complete opposite – what a rough time you must have had/be having . I am so lucky. Seems like have had MS since 21  ( Optic Neuritis but treated within 24 hours with steroids, never told it could lead to MS)   but despite lots of symptoms   for 45 years  they were not  being taken  seriously /diagnosed until finally an   opportunistic MRI,  showed extensive confluent white matter lesions, mostly on RS parietal and temporal areas , just a few in left,  cortical gray matter atrophy  – 3 percentile )  stable – been there for a long time so I have been so lucky in that the brain has had time to rewire and repair itself – amazing what it can do . Had recent relapse for 4 months but was out in isolated places  saw two GPs  at different stages  but now realise should have gone to a hospital, but   I knew how to look after myself and being away from people,  in nature and walking  etc is medicine in itself. I have at last managed to get myself back to where I was before –  whew as did not think that would be possible . I am not  not  being medically  treated. Still waiting to see  my neurologist …  i gather these latest symptoms are unusual so  I am  trying  see if any one has any ideas or similar experience.  If another  MRI could be done I am pretty sure it would now show new lesions.  Thanks will defintley ask about DMT . Had no real idea of what was what re treatment   and people’s experiences which  is why these forums and articles  are  so great.  Have  read heaps of evidence based books and research articles  on  MS, the brain, chronic diseases and life style changes  … and adopting these has made a huge difference.

Thanks Ed

Rosalind

 

 

 

[Rosalind]

Hi there Jess and John.  .OUCH ……. you describe excruciating  TN pain.  It sounds impossible to bear.   I used to get TN  pain  lasting several hours but luckily  not at the horrible levels you describe.. Although I did say to doc if I had a gun I would  have shot  myself. It was  simply to explain  the degree of pain, but  I found out later she apparently thought it meant I was suicidal.!!. I have been lucky as over the many years the  pain has virtually disappeared , slowly gettting less and less – altho  I  get bouts of   incredibly severe  itch of the lower jaw and inside the ear  – trying to stop myself itching it ( which starts up pain/ache ) is an ‘ interesting’ exercise.

Hope you get get yours sorted properly.

Rosalud