I am back - again

It seems my first post disappeared ha ha, so if this is duplicated I apologise in advance.

I used to be on here as TomC, I left as I was undiagnosed in Limbo and felt it was unfair to to be part of such a helpful community when in reality I may not have had Ms.

Nothing has changed,

Its 3 years on and I am still undiagnosed, I am waiting on a 2nd opinion through a different hospital, (appointment letter pending) as from my last meeting with my Neuro she informed me, that she expected me to get better and that it may be that the damage has been done.

i.e I have a lesion in my brain, suspected one in spine, I have had every test imaginable but as I do not fit the Macdonald criteria, or in my Neuros words (your symptoms are not indicative of one disease)

I have come back because I have been struggling even more so physically and mentally and everyone was so hopeful I now wish to remain within the community to help where I can but also (selfishly) to enjoy the emotional support of knowing I am not alone.

Not being able to do half the things I used to sucks as it is but with no support, makes it so much worse. My wife has still been incredible throughout but I know she doesn’t understand fully.

Anyway, I am glad to be back and look forward to chatting with you all again soon. No terrible guitar playing this time.

1 Like

Hey T C. I’ll bring the sausage rolls. …

Hi tom. Like you I’m back again! 3 years on and I thought I was further forward and expected to me discharged from neuro last week. Treat for ms episode 3 half years ago as I was so ill I’v steroids for 3 days. Then lumbar puncture came back clear. 2-3 brain lesions. Sent home to get on with it.

diagnoses with me fibromyalgia reynaulds hyper mobility syndrome.

me nurse and gp asked for a second opinion. If any more lesions would diagnose… No more lesions.

so here we are again. 2 years later all blood tests repeated and Mri on Friday! Tx

I like sausage rolls, bring the veggie option for our vegan and veg friends too ha ha.

Oh Tracey that sucks,

I has 2 Lumbar puncture, the first one a rookie did and spilt my spinal fluid all over the bed, that was interesting. The 2nd was much better in comparison both showed white cells to indicate infection which caused nerve damage which in turn creats a lesion which again screws with my mobility.

We continue to progress though so keep me updated, If I am to go through all those tests again I may break down. The vampires took enough blood to feed an army of little vamps ha ha.

I thought it was you. I was diagnosed three years ago. I haven’t been on for sometime but my symptoms have got worse, so I am here for the same (selfish) reasons. I really enjoyed your guitar playing. You have a good voice.

Btw Tom I haven’t really been on any DMDs but there is a lot you can do to help yourself i.e supplementation, diet, etc.

I wish you luck and I hope that you get a diagnosis soon. :slight_smile:

Thanks WB good to hear from you again.

Im sorry your symptoms are worse again, have you been back to your GP? neuro?

I already try and maintain a healthy diet with supplements due to my ever increasing lack of exercise, currently looking for a gym locally that support disabled people so at least I dont feel pressured by the muscle mass steroid junkies (stereotyping I know a lot of people in shape naturally just a joke to anyone else reading)

I guess its still a matter of suck it an see but I am back so make sure you stay around.


Well, I see my neuro every 6 months. MS nurse every 4 months. They are fairly routine. It’s basically just things getting worse with each relapse. Going on Tecfidera in two weeks, so hopefully that will help.

Sorry you haven’t got a diagnosis. It must be a horrible place to be.

Well its not pleasant but I now have my appointment for my 2nd opinion :slight_smile: 8th of Jan wooohoooo so role on

Well its not pleasant but I now have my appointment for my 2nd opinion :slight_smile: 8th of Jan wooohoooo so role on