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New Member - Neuroinflammation possible MS

New diagnosis and before diagnosis
#1

Hi Everyone,

Have just come out of hospital after a few days and mind reeling a little! Not really sure what I’m looking for except perhaps to vent and wonder if anyone else in similar situation??

Brief history - numerous ‘possible’ neuro symptoms over many years - vertigo, burning ankles, random tingling patches in spine which have all been very short lived from hours to a few days and which I pretty much never gave any thought to assuming ear infections, trapped nerves etc. Last year, sudden onset of pebbles under right foot, tingling and reduced sensation in upper chest , underarm and inner arm which after 3 weeks visited GP for having tried a few chiropractor appts with no success.

Got referral to neuro which took 5 months but in meantime had started antidepressants for panic attacks and symptoms subsided so I thought maybe anxiety related Month before neuro appt had emergency bowel resection for strangulated bowel, very traumatic and when visited neuro appt in March was experiencing various abnormal nerve sensations in abdomen, hip, leg and foot - which I attributed in part to post op stuff. Referred for MRI which never actually happened but had stuff going on with kids so kind of pushed onto backburner.

Noticed 3 weeks ago foot dragging slightly plus waves of heat in feet and cramps in calves, burning at back of knees…then wham! last week, total bladder retention, tearing burning pains in hips, unable to write properly, leg spasming and giving way so went to A&E.

Had brain and spine MRI, Lumbar etc, thankfully not stroke or tumour Discharged with current dx Neuroinflammation under investigation. 1 non enhanced on spinal cord, 1 enhanced, no enhancement of nerve roots or meninges, plus non specific white matter changes in brain, says MS most likely dx but needs further confirmation ie ‘wait and see’ plus further MRI. Some LP results still pending.

Has 3 days IV steroids and thankfully bladder working again and intense nerve pains subsided, just now general weak/wobby and slightly tingly with unreliable legs.

Gosh sorry for length of this!! So am kind of preparing for possible MS dx but feeling a bit in limbo. I’m wodering whether it could be lapsing/reoccuring and perhaps this flare triggered by the trauma of the bowel op?

Thanks for reading, so sorry to ramble but having a son with Autism, I know how incredibly supportive forums can be and am really grateful to have found this one!

#2

hi minnie

welcome to the forum and i really hope that you don’t qualify (i.e. that MRI and LP don’t say ms).

whatever happens, you are a strong person to have gone through a strangulated bowel and surgery to correct this.

whilst caring for kids including one with autism.

although kids with autism are so lovable, they require a lot of patience and understanding.

just bear this in mind and don’t let stress get you.

carole x

pop back with any more questions you may have.

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#3

Hello Minnie

You have really had a journey over the last few years. Strangulated bowel is deeply unpleasant. Hopefully post surgery that will now be fixed. Sometimes surgery can lead to an MS relapse. So if you are diagnosed ultimately with MS, it’s entirely possible that the surgery has kicked things off again for you.

Hopefully this is a one off occurrence and you’ll go on to have no further neurological issues.

But whatever happens, you are welcome here. We will try to answer any questions you have, or just be available for virtual tea and sympathy, or more likely gin and sympathy.

Sue

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#4

Hi all, further to my first post above, it’s now been a few weeks since I came out of hospital and bladder function has improved although ‘reluctant’ and takes a few attempts to void! Been walking ok for last week or so with no dragging in leg. When discharged the consultant said I would be reviewed in 3 months at clinic but to let them know of any ‘new’ symptoms. I have still had the waves of heat across feet and fatigue, spasticity in leg has settled down a bit, so assuming the steroids did their job.

The last few days, I have painful eyeballs (neuro exam last time said I have wobbly eyes whatever that means) and a really uncomfortable feeling of over sensitivity/pain/burning down front of both legs from the knee downwards - it actually hurts where clothes touch me!!

I’m not sure whether this counts as a ‘new’ symptom and whether to report it - thoughts anyone??

To be honest It’s not on my mind much as daughter is having panic attacks and sudden onset of mutism and is being referred for autism assessment so she is my priority at only 14!!