Hi everyone , thanks for the warm welcome . I spent £2000 on private treatment including an mri , i was not given GAD . I have now been told i need an enhanced mri and have had to chase NHS to get this. I have been told that I have ADEM or the beginning of MS but I started getting symptoms after some weeks of dental treatment which gave me so much pain and aggravation. Prior to that I was attending 7 hours of gym sessions per week , I'm active , have worked for decades and have just turned 50 in April . I am confused , haven't been driving , went out to catch a bus and fell over I now feel pretty much housebound ... not something i would have anticipated , thanks X
Welcome, yoflow, it's a tough thing having your life turn suddenly upside down and gaining a new identity as a medical mystery. I hope you get a proper diagnosis soon and that your condition is amenable to treatment. Feel free to post additional information about your symptoms -- sometimes members can help guide diagnosis, if it matches their own experience.
Good evening.
Your case sounds familiar. Started with numbness in both hands, when on holidays. Spent some 3000€ on mri, lumbar puncture and a 5 day iv cortisone shape. Things did not get any better but from bad to worse. Once home I was hospitalized twice, had 4 more mri s 1 more lumbar puncture and 3 more 5 day shapes of cortisone before I was finally diagnosed with MS 8 months later, after being initially diagnosed with ADEM. First a failed attempt to go on interferon that caused epilepsy before finally put on Tysabri. Now 6 months after the 1st drip of Tysabri things have stabilized and life looks more promising. Watch a couple of things such as your nutrition, life style and stress. Read the OMS just in case.
I had my first symptoms shortly after turning 47. I went through stages I could not stand or walk without assistance but I managed to overcome the first difficulties. Those around you need to be patient and understanding…
Hey yoflo64 - not sure whereabouts you are based but if you can get yourself transferred to Charing Cross in London their neurology team is top notch and actually know about ADEM. They put me in an auditorium in front of 15 senior neurologists and whilst it was a bit intimidating I've never felt in safer hands.
thanks Skittles , I am actually in Luton , not far from the station . I am with a local hospital consultant , finally got an enhanced MRI booked for next week , thanks for the advice
Hello yoflo. Did you say you live in Luton? Me too! What gym do you go to? I have to go to a gym too to get my strength back. I go to dw in Dunstable and inspire in Luton
Hi I live near Marsh RD , I can't see to drive so I have had to suspend my membership .. Iwas going to Inspire and Lewsey for aquafit mainly .. my favourite pastime. Ihad enhanced MRI on 23 May but don't get results til 23 June .. my name is Su
Aw I see, bless you. I probably know you. I went to st joes and don’t live to far away from you tbh , probably have seen you around. How did you find the l and d? When I was really bad- I had lost any sense of anything and aparently they were going to send me home until my mum and best friend got involved and I fell over. Good the second time I got transferred back there on the stroke ward
yoflo64 said:
Ihave only had MRI there .. Ihad 1st MRI and saw Dr Watts at Spire Harpenden . I have had no medication at all don't know what to expect really am struggling on my own atthe moment .. i am off sick from work since march ,
Have they diagnosed you?
not completely .. adem is on my latest medical certificate .. It's one of the things they thought it could be ... very confused
If it was adem you detriate very quickly: you can’t walk/talk/swallow, pretty much anything. Like a stroke really. Have they ruled MS out?
really don't know but have deteriorated a lot .. need to see consultant to see if he knows
yoflo, what are your symptoms?
fizzy feeling in he hands and sometimes the leg, problem with vision and using computer.. lose control of my hand -- my friend says similar to migraine attacks before the headache comes but with me it is all the time. my walking is better now , i did not lose any strength in arms or legs . at one point the room was spinning , my symptoms vary
What did the MRI show, exactly?
first mri shows white spots on the brain... had enhanced mri on 23 may but won't get results until 23 June
yoflo, you may find this article helpful:
http://www.unitedspinal.org/msscene/2009/12/08/disorders-that-mimic-multiple-sclerosis/
thank you , I am looking through each one . My mum has Sjogrens so I'm used to her many symptoms