Im not sure where i should be posting this, or even if anybody can help me. I have been sick for 2 years and nobody seems to know what is wrong with me. To cut a very very long story short I have been diagnosed with Cubital Tunnel Syndrome on both hands and Cubital Tunnel on both elbows. After surgery the numbness and pins and needles continued. I was then diagnosed by the neurologist with old age (46) and obesity (i only became obese once i got sick). The GP diagnosed Menopause and smoking related illness. I had the test to see if i am going through menopause and it was negative, i also quit smoking 18 months ago. The Rhumatologist then diagnosed Fibromyalgia and Chronic Fatigue Syndrome. All of these were diagnosed with just blood tests and nerve conduction tests. I was refused an MRI many times. Eventually the Orthopaedic Surgeon sent me for a neck MRI. It showed up signal changes and the radiologist queried a demyelination disorder. I was then sent for a Brain scan. This also showed up something to do with T2 although i cant remember exactly what it said. Yesterday i saw the neurologist again as i was to finally get a diagnosis. She showed me the MRI findings and i could see what looked like 4 long white grains of rice along the cervical spinal cord. She said this is inflammation. I told her again about my pains, my fatigue, the muscle weakness, the loss of balance, the numbness in arms and legs, the Raynauds in the hands and feet, the falling over, the brain fog, spasms and twitches. Her final diagnosis is…Stress! I know stress can cause lots of things but can it really cause lesions on the spinal cord and brain? Im so sick of it all now, ive lost my life, i can no longer do any of the things i used to be able to do and never leave the house incase i fall down. Everything they have said would make me better i have done. Also last September for no reason at all i woke up one morning and everything had gone. For 4 weeks i was my old self with not one problem. Then just as quick it came back and has never left. Am i right to be worried?
Oh dear…what an awful time you`re having hun!
I dont think this can all be put down to stress, with you having clear evidence on the MRI of lesions on your spine.
I had a lot of stress when my ppms like symtoms began. I lost a lot of my hair and when I discussed this with more than 1 neuro, they said they looked for organic reasons for my crippling problems, not psychological ones. The hair grew back, but the symptoms worsened.
Maybe you should discuss the diagnosis with your GP and tell him/her of your concerns.
Like your`s, my life has changed completely from what is was 16 years ago…when I was 45.
I was mis-diagnosed with PPMS for many years and now my diagnosis is still inconclusive.
I`ve seen 16 neuros, in as many years and am not much wiser as to what is wrong with me.
However, I have a good network of support, from GP, district nurses, OTs, hubby, 3 carers and i do the best I can to enjoy life and I try to pace my activities, in order to rest when I need to.
Hope you can find an answer soon.
Thank you so much for your reply. As much as it helps to know that i am not alone it also scares me that hospitals can constantly get away with this. My GP is useless, she wouldnt even be able to tell you my name if her life depended on it, let alone be able to give me longer than 10 minutes to listen or help. When i questioned a dianosis before with her she said “Who am i to disagree with a specialist”?
The only stress i am having is from so many people telling me they dont know what is wrong and just being happy to fill me with pain killers. I really cannot accept that stress can put those rice grains in my spinal cord.
The neuro wants me to have a lumbar puncture so she can prove to me that its stress. I know this isnt a nice experience and it comes with its own risks so im concerned about having it done. My biggest thing is why have another invasive test done when they are still going to ignore the results even if they are positive or say its still inconclusive.
I have no network of support, my eldest children have left home and work in the police so work many hours, my only child at home is autistic and my poor hubby starts work at 4.00am and then tries to do as much when he gets home and spends his days off driving me from one appointment to another. I cant leave the house so never likely to meet anyone who can support me.
I do hope i have some answers soon as i know i cant carry on like this for 16 years.
It’s a nightmare situation you are in. The first consultant I saw was an absolute waste of time, he couldn’t wait to get me out of his office. He literally loooked at my notes and said “well I can’t see anything here so I can’t help you!” My husband flipped and asked for a second opinion. We had to go to our gp and ask him to refer us.
We were introduced to my neuro and havn’t looked back since. In my first consultation we spent over an hour with him, and he went through every single symptom and test that I’d had. After seeing him his nurse took us into a different room and spent another half an hour making sure we understood everything.
Had a phone call a few days later from a lovely ms nurse who arranged to come to my house and see me. When he came he spent over an hour going through everything, and gave me so much information it was amazing. Any issues or questions I have, I can ring him and leave a message and within two days he will always phone me back. He also put me in touch with an incontinence advisor who is helping me with my leaky waterworks!
I don’t know if this is normal or if I am just extrememly lucky! I guess what I’m trying to say is ask for a second opinion. Is there a different GP you can see? Mine is amazing he even comes out of his room calls me in and holds the door open for me. (I guess I am really spoilt!)
Really hope you get the support you need soon. Let me know how you get on.
I have had a lumbar puncture; I was worried beforehand but it was absolutely fine. Results were then positive for the oligoclonal band thingies which confirmed my diagnosis and made things clearer. In your position I would agree to the lumbar puncture. If it’s positive you have a clear diagnosis. If it’s negative you’re no worse off than you are living with the unknown now. Take care. Ann xx