Advice for a diagnosis

Hi I hope you can help me, I have a complicated story but my symptoms started years ago and I have deteriorated over time, I now feel like an old woman in a 27 year olds body. I started with a tremor at the age of 14, over the years it has got alot worse, i even drop things at times.10 years later I started with weakness and aches in my legs, I attended my GP who informed me I was just stressed and pushing myself to much. My kegs ache everyday now, on and off but severe at times. Then in October I started with pains in my left arm, Ii thought i was having a heart attack, no pain relief worked, but I tried to live with it until I started with bowel incontinence. I attended my GP again, she examined my legs and reflexes, she found I had upgoing plantars, brisk reflexes and weakness in my legs. She referred me to a Neurologist. On waiting for my appointment I had more accidents and even bladder incontinence, I have since Oct had 5 bowel accidents and 3 bladder accidents. I remained patient until I woke up one morning in January unable to move my left arm, the GP told me it was temporary paralysis, so my husband drove me to A&E and I was admitted, every doctor I had seen to this date told me it sounded like early stages of MS. However the doctors in A&E feared a stroke and they did an emergency CT and MRI of my head and cervical spine. I had not had a stroke or bleed and there were no legions on my brain. Great news, except I still felt the same. The Neurologist who my original apt was with ordered a head, cervical, lumbar and renal spine and thoracic spine with contrast… However on discovering I had already had the normal MRI these were cancelled and I was diagnosed with CFS. I really hope they are correct and I don’t have MS, however with most of my symptoms being lower body it makes me wonder if they would of found anything on the other MRI scans I have not had. I was wondering if anyone here has received a diagnosis of MS from legions found on the MRI on the spine rather then the head? I have heard that legions can be found on the spine, I have also heard that contrast can show early MS legions which a standard MRI can miss. I have a new referral with my Neurologist in March so I want to go in to the appointment with as much knowledge as possible. I don’t think I have CFS… I don’t fit the description or symptoms… I am not tired, I ache, I can’t sleep because I ache so I get roughly 5 hours sleep a night and have 3 young children to look after, and I’m still not tired. Sorry its long winded, please help me. X

I have other symptoms also, I have double vision, I have a bad memory, I sometimes struggle to find the word and I can’t drink alcohol because it makes my leg pain worse and I get drunk on just the legal drink drive limit. Just thought I would add this.

Hello and welcome :slight_smile:

Please remember that I’m not a neuro, and any advice I give is simply the thoughts of a fairly well read amateur!

I would think that you having had symptoms for many years and that your arm symptoms started several months before you had the MRI mean that, if it were MS, your MRI would almost certainly have shown lesions (it’s lesions, not legions, btw), even though it was only of the brain and cervical spine. In which case, I think it’s highly unlikely that it’s MS.

I don’t believe for a second that CFS is an appropriate diagnosis though. I could easily be wrong because I focus on MS in my reading, but I have never heard of CFS causing bowel and bladder incontinence and I think you should have those extra MRI scans to see if there is something lower down your spine/spinal cord causing problems. If those scans are clear, then you need to be looking for alternative causes, perhaps neuromuscular, metabolic or genetic. [A wee aside: there is a difference between CFS and ME. I don’t know enough about it to be sure, but I believe that ME can cause all sorts of symptoms and it even be fatal in rare cases. However, a lot of neuros use the terms CFS and ME interchangeably - it’s an old habit that is very unhelpful.]

Is there anyone in your family with similar symptoms? (Look back on both sides a few generations.) If there is, then you need to tell the neuro. If there is a lack of information (e.g. if you are adopted or have lost contact with one side of the family), then you need to tell the neuro.

Have you seen an ophthalmologist about your double vision? If not, then please get a referral from your GP so you can tell the neuro what’s causing it.

Also, have you had a thorough battery of blood tests? Not just the standard tests, but everything that the GP can think just might remotely have something to do with your symptoms. (Vitamin and mineral deficiencies can cause all sorts of neurological symptoms.)

The other thing I would be asking about, if I were you, is having more tests done because there are hundreds of neurological conditions that do not show up on MRI. So what about VEPs, SSEPs and EMG as well as urodynamics? If none of these have been done, how can the neuro be sure it’s CFS?


Karen x

Thank you so much for your reply, it is very helpful. My main concern is that it is MS, you have helped ease these concerns. Not an awful lot has been done, I feel as though I have been dismissed, which is why I want to go to my new Neuro apt fully armed. My GP has ran a lot of blood tests, thyroid and Vit B both defo tested. My bloods all look pretty good apparently. I do feel I need to push for the MRI scans with contrast of my lower spine. My other concern is something pushing on a nerve in my spine, but I have no pain or aches in my back. No difficulty with my back what so ever. So I don’t think I have a slipped disc pushing on a nerve… But what? I am so happy you replied and actually understood my ranting… As when I read it back, I thought I sounded like a crazy lady. Lynsey x

I asked the same question btw, how can I be diagnosed with CFS when all other possiblities have not been ruled out??? Also, no family history of anything like this… A lot of cancer in my family but nothing neurological that I am aware of.

You don’t need contrast since your symptoms are long-standing. Do push for the other tests too. Good luck :slight_smile: Kx