Hi there...

[therapist500]

Hi, I just thought I'd introduce myself to you all as I've recently joined the community. My story is pretty much like most of yours; I've been recently diagnosed with CFS/ME and Epstein Barr Virus. However, I'm not totally convinced that I have CFS/ME due the nature of the diagnosis, (through the process of elimination), as opposed to hard evidence. After doing much research on MS and considering my own symptoms I think that I may have a type of MS. I admit that many of the symptoms are the same and that ME can mask other illnesses. I've seen three doctors who all give a different interpretation to my symptoms. So far I've heard CFS/ME, MS and Muscular Dystrophy, (the latter due to muscle pain and weakness of the limb girdles). Yet the last doctor had the balls to refer me to a neurologist after simple tests to check my muscle strength, eye sight, etc.
Over the last 12 months I've been coping with this pretty well. I have moments when I break down crying, especially at night when I'm alone listening to my music with my glass of wine (medicine), but overall I try to remain positive. However, family life has recently become strained as I've been advised to have my own toothbrush, (as opposed to sharing a Braun with separate heads), avoid kissing and other 'minor' issues. Yet in the early hours of this morning a doctor arrived to check out our three year old daughter, whose now been diagnosed as having swine flu. Because of the EBV I've been isolated from my wife and daughter because of the risk of complications due to my illness. My wife was advised that they are not to have contact with me. So, it hit me for possibly the first time, of the seriousness of the illness I have. Yet, just over a week ago I was almost hospitalised due to complications caused by gastroenteritis. You'd think I'd know different.
So, here I am, reading many posts from you guys in similar positions and learning a great deal. As you can guess from my user name I'm a therapist. And although I understand much of what's going on professionally and theoretically I'm still in the same boat as all of you. I'm going through the 5 stages of grief, asking myself those immortal words 'why me?' But then I get all philosophical and remember some wise words that someone once said, 'Why not you?'
Anyway, this is a great site for many reasons and I'm so glad I found you all. I hope you all make contact with me at some point and give me some wise words of your own, tips and pointers that may help me cope better over the term. Plus if you have some good jokes I'd like to hear them lol.

Merry xmas to you all.....xx

[thyroidian]

Hi Therapist.
Welcome to this great forum. I love limbolanders, it offers great advice, support when you feel down, and is like a little community. With some lovely people on here.

Im sure they will make you feel at home.... and dont be afraid to ask anything, if we know we will answer or advice.

Gosh EBV. I remember when i was battling that,
How long have you had it? It sounds like you are not feeling to good, and are having additional stresses about supporting your family.
Im sure though your family understand, and you have to stay strong for yourself as well as them.


Have you seen an immunologist? I know you are waiting to see a neuro.
But when i had EBV, and CMV, i went to see a immunologist who was very valuable, and did immune testing, regarding immunoglobulin, and how the immune system reacted , and what state it was left in.
Also they can refer you to the right consultant, as they usually do a lot of auto-immune testing also.
I just think it might be a thought, if you are feeling unhappy with the diagnosis which has been made.

Anyway i am wishing you well,  and look forward to sharing some thoughts.
I hope your little girl shakes of the flu quick.

Hope you and your family have a great new year.
Remember stay strong as you are fighting this.
A very big welcome, to joining this forum.. ( I have found this the best)

Nicola

[jibjen]

Hey,

How are you...dumb question...I am so glad you have joined us..i am sorry to hear about you and your situation of isolation from your family...That must suck...I too am going through the process of elimination, although my doc always seems to blame my migraines, which none of my symptoms seem to coincide and many of my MRI's (actually the past 3) suggest MS....You see he has never explained any of my MRI's too me. I have only learned that I have 20 brain lesions and that it is suggestive of MS by getting my own reports from tech when I go for MRI's...He is a doc that either does not want to share this as he is not positive of MS yet OR is just dismissing it..I sometimes think he thinks I am making it all up...

Have you ever had any MRI's? We can totally understand how hard it can be to cope with an undiagnosed illness and go on having these symptoms and no answers...I hope you stay with us and share. Please don't hesitate to ask questions, vent or just let it all out here. I do not know what I would do without this place...It is really a comfort to know I am not alone...and neither are you.


I hope your daighter is well soon and you recover enough to reunite with your family....Word of advice...don't give up.....
JibJen