My story so far ....

Hi all hello

I have posted a 'hello' before and thought i should now post my 'story'.

I am undiagnosed and on my second neurologist. My symptoms are as follows:

FATIGUE. Constant, relentless, debilitating fatigue. Never wake up refreshed.

SENSORY: Ultra sensitive skin, especially left arm, severe itchiness and skin and 'inside bones', tingling, fizzing, buzzing, pins and needles. Odd numb patched. Feeling like wearing latex glove all on left side. one side hot, one cold. Hot patches, creeping sensation of burning and pins and needles. Bubbles in spine.

WALKING: Foot sticking/catching on walking. Stumbling and veering to left, walking into things, people. Tripping on nothing or up steps, tottering on standing. Some falls where left leg has 'disappeared. Legs giving way/near collapse on occasion. Lean on people/things. Sway when standing.

MUSCLES: Twitching/jerking/spasms. Arms and legs feel weak, especially left side. Muscles tire very easily, stabbing pains. Left arm/hand clenches and fists up and pulls inwards. Cramps and tight feeling in calves. Clumsiness and dropping things. Numb hand on waking often.

A period of blurred vision (2 months). Mis-placing things when putting them down.

Dizziness (about 2 months) with some dizzy sensations remaining occasionally.

Face/people recognition problems. Word finding/wrong words. Short term memory of a pea. Choking on saliva, dribbling, biting lip, cheek, tongue, even at night.

Bladder and bowel mild incontinence.

blushLack of sexual libido and much less feeling 'inside'.

Headaches. Acid reflux.

My first symptoms began after a bout of shingles. I first saw a neuro in 2003 who was very dismissive but sent me for a ct scan to keep me quiet and to rule out tumour. Results: 'Essentially' normal.

Went back to same neuro in 2010 on the advice of a physiotherapist. "I see your physio has got you all wound up again" was the first sentence she said as I walked in. She giggled through the whole consultation when she wasn't too busy phoning someone up to talk about a completely unrelated issue about someone else (No, I am not kidding, she MADE the call, not received).  She basically wiped me off the bottom of her shoe. Anyhow she sent me for brain MRI and neck MRI (I think just to cover herself). Result: Normal except for a damaged nerve in the neck which was 'probably' the cause of the weird sensations in my left arm. Have some citalopram for that and forget about the rest. So i did.

September 2011, Shingles again. ALL symptoms flared up massively. Asked for second opinion. Saw really lovely neuro Jan 16th. She listened and was keen to get me some answers if possible. She sent me for blood tests there and then. I have an MRI of brain, neck and spine booked for towards the end of Feb. I have a lumbar puncture on Thursday this week nervousand am awaiting an appointment for memory testing. Regardless of the results I have a 're-consult' in May to discuss the results. The first neuro didn't even offer me that, just sent a curse results in a letter.

The bloods form said 'neurodegenerative disease' and she told me she was concerned that the shingles was leaving disease or causing a disease in the spinal fluid (I think).

I have lost my job because of the fatigue. I am really hoping for some answers this time. Any comments would be really appreciated. Does this sound like ms?


I don't know much about MS as I am only at the beginning of all this, but at least it sounds like  you are being taken seriously at last and I hope you get some answers.

I have not been fully diagnosed yet either and am having evoked potentials and brain scan this month so am at the same stage as you. This is such a horrible time but I somethimes think maybe being diagnosed wont help much, I just want to feel normal again.


Wow, you have a lot to deal with letdown


That first neuro sounds like a complete idiot. I hope you'll make a complaint if this neuro manages to work out what's going on? She should be well and truly b******ed for her behaviour angry


It's hard to say whether or not it could be MS. MS can cause pretty much any neurological symptom, so it is easy to confuse with other conditions. One thing that points away from MS a bit is the use of the word "neurodegenerative" though. That isn't normally used with MS. Of course, that's just what was written on the form and perhaps the new neuro is being thorough and ruling out other conditions (as he should!). I guess time (and all those tests!) will tell.


Fingers crossed that you get some answers very soon.

Karen x

Thank you all for your replies. I wasn't sure what the neuro meant by neurodegenerative disease because when i googled it (I know i shouldnt do that!!) it came up with very weird answers and also included things like parkinsons which I don't feel symptamatic of, so its just wait and see for the tests and then the results. First hurdle, lumbar puncture tomorrow nervous! I will let you know how it goes.

Cheers x

Good Luck for your LP.




Good luck with your LP xx