do i really have ME/CFS or is it MS?

[Unicorn_Princess]

i was diagnosed with ME about 5 yrs ago. a huge variety of symptoms which fluctuate. what has got severley worse and more frequent the last 6 months are the following 2 symptoms... stabbing pain through the left side of my head, and/or left side of face (it really is stabbing and excrutiating, lasts maximum of 30 secs, dissapears, then can come back minimum of 2 minutes later).... and pain in my neck which is so severe i can not bring a cup to my mouth, turn my head even a mm in any direction, can not lay comfortably, and codeine barely takes the edge off, sometimes it then goes into my right shoulder and collarbone area and when it does so, i also then get numbness and pins and needles in my arm and hand.
i know ME is misunderstood with a number of specialists experiementing with their theories, but the general consensus appears to be a retro virus- whatever that means? in my internet searches however ME is not linking to these 2 things which are getting worse for me. I have asked my GP for an MRI before but he wouldnt refer me. Do u think i should go elsewhere and demand an MRI, do you think i could have MS, or just some nasty ME after all? Please help, i feel really scared, im 25, and due to start my 1st year at university in september, my head is all over the place. could it be i have ME and TN and not MS??? Please help xxx

[kitonthemoon]

There're quite a few very knowledgeable doctors in UK...one in particular, Sarah Myhill, will order tests to varify if you indeed have ME or not.

ME/CFS patients is known to have brain abnormalty.  In early 80's ME/CFS was identified as affected by a retro virus, one of many 'suspects' associated for probable cause of ME/CFS.  to research published on XMRV.

I have severe headaches, pin and needle pains (I called electric shock pains) that comes and goes in waves.  You think the fact that you're entering college could cause stress that is worsening your symptoms, regardless if it is ME/CFS, or MS.

Let me know if there's any other question I might be able to help answering,

Huggies, xxx

[Unicorn_Princess]

Thankyou for your support :) yes theyre planning on moving close to where I'll be studying which is handy. I'm going to try and find a reccomendation for a doctor in that area who will understand, and definately try for an MRI- the anxiety about just attempting with my present doctor irritates me hehe. I really hope that you have some answers now and can set about treatment and recovery. Best wishes x

[lvfrogs]

Please stay on top of this. I still think there is no excuse for not doing the MRI. My primary referred me to a neurologist and he is the one who did the brain MRI. He didn't question it at all. I think it is fairly common with CFS/Fibro patients, mainly to rule out MS. Thankfully, I don't have MS but there were some other concerns, so I am so glad I had it.
I hope that you can find a new doctor to help you. Do you have parents that can help? (Since you said you are going to the university)

[Unicorn_Princess]

Thankyou for your reply :) it was a couple of years ago i asked him for one but i feel slightly intimidated and patronised by him he just shrugs his shoulders most of the time, i think he said something about the hospital wont accept referrals unless they see it as absolutely necessary there end so the refferal would probably come back to him. but iv heard that the NHS just do not want to spend money on MRIs for ME, apparantly for 2 reasons- 1 being that although the world health organisation recognises it as a neurological disease the government will not accept it, and 2ndly because MRI can show evidence of ME which shows up different to the evidence of MS (but is evidence of physical condition nonetheless) which woould result in more patients legally being able to claim benefits such as DLA (disability living allowance). So i am guessing that an MRI is expensive, and would result in more expense through giving me evidence that its not all a mental disorder like depression etc. I am moving in 8 weeks time for Universtiy, so im hoping the new doctor i have there will be more understanding and give me the attention i need in managing whatever is wrong with me. Thankyou agin for your reply :)

[lvfrogs]

Absolutely your doctor should be checking you for MS with a brain MRI. I just recently had one done and did not have the severity of symptoms you are having. So, if your regular doctor will not order it, please get a 2nd opinion. Did your regular doctor say why he wouldn't do it? Hopefully, others will answer and help you too!