Home and Final Update.... for now

Ok 2 weeks in the finnest NHS hotel Costa del Southend Hospital, Staring at old guys in their 70s who has haved strokes has led to me feeling quite depressed, but I am home now and my mood is changin by the day.

Ok so thye let me go as I could walk the stairs, and they have done everything possible that they can do, even tests I suggested. They said “we are unable to diagnose MS as you dont show enough symptoms and people with MS are normally really easy to diagnose” (not what a lot of you say on hear but… ok ill go with it) LP showed more white cells, blood showed something else more, I dont have aids or any STDs (I still trust my wife even if they dont). It is now down to auto immune diesease such as Lupus, hich again w=I have none in 3 generations so its unlikely.

They want to put it down to “A 1 off eppisode of inflamtion” They cant find the cause pending the final results, Yes because I put that lesion in my brain on purpose. However I now wait 4-6 weeks and they hope I improve. MY walking is slighly better but it changes so instead of walking like a thunerbird (I have heard all the virgil jokes) to now walking like a Pidgeon (yes funky pigeon.com).

I am conserned I suggested to test for toxplasmosis as as we do have cts, they are indoor and I do change their litter, they was like “ok we can do that test as well” Hmmm maybe I should go to Neuro school.

Soo no no dx just suggestions until they see if I imporve get worse or stay the same. So for now ladies and gentleman its a matter of suck it an see. So I could suffer this for 10 or 15 years before I have what they class at the “right symptoms” for MS. Regardless I will be doing charity work for MS and neuro dieseases so I will kepp you upsated and will check back regularly but there is no point of me wasting peoples time, (which you have all kindly commented on many of my status’s when other people are much more deserving of your kind support). Much love and peace

From your resident Thunerbird/Funky Pidgeon

Tom x

Sorry you didn’t find out exactly what you’re suffering Tom. It must be beyond frustrating for you. Glad you’re home again - you must overjoyed! Hope that things become clearer with time and that you do not progress further. Teresa xx

Hi Tom

I’m so glad you’re home. Sorry things are no clearer. I can understand some of your frustrations - I’m lucky that my symptoms haven’t been as debilitating as yours but a year and a half later 1 MS specialist, a genral neuro a second MS specilaist referral, 2 MRI’s, bloods and EMGS later I’m still non the wiser. The general neuro I saw for a second opinion last time said my neuro exam and MRI are almsot essentially normal (essentially - I love that word) which I don’t deny but after discussion he says my symptoms do fit with MS and he has referred me to an MS specialist who I’m due to see next week. I know I’m far from a diagnosis even though I am seeing an MS specialist - its difficult when your exam isn’t showing much isn’t it and you’re having symptoms.

I guess time is the key factor here for so many of us.



Well Tom good luck for the future mate (no strings attached) its been a roller coaster ride for you these past weeks. I look forwards to your posts so dont be a stranger. Frank.

Thanks guys, I wont be a stranger, Ill still check regularly and help and yes 2 x MRI, 2 x LP that show more in them! more blood (swear they are harvesting it) We will se, I have thought about every worse case senario, I also dropped so low, I walked out of the hospital at 10 ans was found by security at 12 walking the grounds, my wife went spare as noone wants that phone call, We have lost you husband but It just does get too much.

I am glad to hear others are getting there, I had a second opinion from another neurologist that I couldt understand (french) who did none of her own examinations and just apparently read my notes. At least I have pills for the twitching, which seem to be working, actually 2 lots of pills so something gained.

Sorry to hear you didn’t get any answers. Nice to hear you’re home though :slight_smile: I really hope they’re right that this is a one off - and that you are soon improving! Karen x

Hey Tom - what a rotten time you’ve had. Bet it’s great to be home…sorry you haven’t got any answers from it all. Stick around will ya…

…don’t go wandering again!!