Can't believe this is Chronic Fatigue syndrome.

[hobart333]

I have just had my MRI results back with a diagnosis of Chronic Fatigue Syndrome. Not at all convinced as as far as my extensive research has told me symptoms much more akin to MS. My MRI showed 'one or two small foci of high signal within the white matter likely to represent small vessel change. The morphological features were not strongly suggestive of demyelinating disorders such as MS.' A previous spinal MRI showed disc bulges. Not sure if that is significant or not. Can't believe that the amount of discomfort I have in my limbs, plus the gripping pain in my chest and loss of fine motor skills and neuralgia are CFS related. Any thoughts would be greatly appreciated! I am in my late 40's.

Sorry can't give any advice but to ask for a second opinion. Does sound more MS related though?

Hi Hobart! I understand your bewilderment, and also have a DX of CFS, which has taken me a couple of years to accept and adapt to. It's a horrid DX, mainly because it's so poorly understood, especially by medics and support systems who should be there to help!
I don't know how much you know about CFS as I imagine as it wasn't the diagnosis you were expecting, you may not have had a chance to read up yet. Muscle pain, neurological symptoms and extreme debilitising fatigue are common symptoms, along with a whole host of other nasties. The trouble with CFS IMHO is that is is also a DX of exclusion, the it doesn't fit the DX for x,y,z, therefore this is the only thing left! CFS has similarities with MS and SLE and all sorts of other autoimmune and neurological conditions but as yet there are no commonly used lab tests to say definitively that it is the correct DX, - the only tests that are done are to rule out other better understood conditions, for which there are tests. MS for example has a very clear set of diagnostic criteria now( although in the days before MRIs it was more symptom driven) so there can now be years between first symptoms and the definitive test signs being detected, leaving years of undiagnosed and untreated limbo. Very frustrating. This applies to several other autoimmune conditions too. Some people dxed with CFS by exclusion go on to fit the criteria for other conditions, and then get the right treatment for that condition. CFS has only symptomatic treatment.

Any way back to CFS. I had the same disbelief! There are a few books on the subject but some are very depressing just because they are so unhelpful. There is however hope. I am a lot less unwell than when I first got sick.

The other thing you mentioned was your back. Could spinal compression be causing some of your symptoms perhaps? I am not a medic so just speaking from my own experience, and also have spinal problems, so it rang a bell with me.

We have a supportive thread (about spoons) for people with debilitating conditions, which you may like to join. There are others with newly diagnosed conditions.

I have ME/Chronic Fatigue Syndrome, and this document describes it very well, read it through, particularly the symptom list, see for yourself if it sounds like you.

From what I have read people with MS sometimes don't get that diagnosis straight away. If you don't have CFS, it may become a dustbin diagnosis for you, and you may have to push to be reinvestigated for MS/anything else.

You describe "the gripping pain in my chest" - I have heard of the multiple sclerosis hug - does that sound like what you have?

e.g. here's one link about the MS hug that came up when I googled, there are loads more

Thanks folks. Have resigned myself to not really knowing what's going on. If it gets worse then maybe I will take further steps at getting a diagnosis. My GP has prescribed me Gabapentin, let's see how that helps.

Hi, hobart.

I have MS (relapsive and remissive so it goes away and comes back). I had a MRI 4 years ago which showed a few lesions and the MS was confirmed by a lumbar puncture as they look for some sort of bands in the CSF. I think it's worse not knowing as you start to doubt yourself so it's worth asking for the lumbar puncture. I suffered from extreme fatigue and nerve pain for a couple of years before being diagnosed and had various tests that showed nothing and I was diagnosed with Chronic Fatigue for the first few years (which is still a crappy disease )

There's a few of us on a thread, I'm sure the others won't mind if you want to join us to ask some questions.

I know it's in the life-limiting illness section, it's not though so please don't panic. The disease itself varies greatly from patient to patient and some get no symptoms at all.

www.mumsnet.com/Talk/life_limiting_illness/1798205-Just-diagnosed-with-MS

Oh, and I read somewhere that aspartame (artificial sweetener) also mimics some of the symptoms of MS so it may help if you avoid this. There's a lot of sites about its side effects, so have a google.

Hobart that's roughly how I am - resigned to a CFS diagnosis for now but aware it could be something else. Or if I am lucky perhaps it won't. I think it is helpful to know that early diagnosis of MS makes little difference, whereas a wrong diagnosis early on could cause harm - or that's how it was explained to me. Learning to pace and keep as healthy as you can is key to both conditions.
I hope the Gabapentin is helpful.