Can anyone help me. Have problems for over eight years and getting worse. This last problem put me In hospital for five days. Lose of power and sensation to pinprick test on left side toe to scalp. Really scared as what to expect when I go back to see neuro. Lumber puncture also done. Still awaiting results from this. MRI of spine also done. No obvious evidence of demyelation. Degenerative disc changes in L1-L2 and a annular tear L5-S1 MRI Head There is abnormal areas of signal intensity noted in the white matter in both cerebral hemispheres. The shape and position of some of the lesions are suggestive of inflammatory demyelination. The ventricles are midline and symmetrical. No hydrocephalous is seen. No midline shift or mass effect seen. The visualised intracranial blood vessels retain normal signal intensity. Having to use a stick to keep balance. Have loads of other problems also to suggest MS. Scared male 38yrs old.
Hello and welcome
I know this is all extremely scary, but I think it’s really important to remember that you’ve been dealing with this for eight years: getting a diagnosis of MS won’t change the way it’s affecting your body (assuming it’s MS), but it will get you access to much better support in the way of meds, aids, physio, etc. And MS isn’t the end of the world - it could be far worse! Yes, it sucks, and we sure as hell wouldn’t choose to face the challenges that MS sometimes throws at us, but the vast majority of us do all the normal and important things in life, live a pretty normal life span (I’ve met MSers in their 80s and 90s) and, assuming we choose to, generally have good, happy, fulfilling lives. Of course it’s easy for me to say that - I’ve had a long time to get used to my diagnosis - but I promise it’s the truth.
“MRI of spine also done. No obvious evidence of demyelation. Degenerative disc changes in L1-L2 and a annular tear L5-S1.” These are fairly common abnormalities and aren’t related to MS. There’s no mention of how serious the degenerative disc changes (aka “wear and tear”) are so I would assume mild. Same goes for the annual tear, although it might be causing some symptoms. These normally fix themselves, but it might be worth checking how bad it is so you know whether or not to push for therapy or perhaps surgery.
There is abnormal areas of signal intensity noted in the white matter in both cerebral hemispheres. The shape and position of some of the lesions are suggestive of inflammatory demyelination.” Areas of signal intensity mean areas that are brighter than they should be on the images. These are lesions, i.e. areas of damage. They are in both halves of your brain. They are in the white matter which is the stuff in the brain that does all the communicating between the areas that do all the “thinking”, encoding, storage, etc (if you read my sticky post about the brain & MRI, this should make more sense). The radiologist is saying that (at least some of) the lesions look like they are due to an inflammatory process that causes demyelination (damage to the myelin coating around nerves). Demyelination damages the nerve and disrupts the way it works; it is a key process in MS, but it also occurs in other conditions.
“The ventricles are midline and symmetrical. No hydrocephalous is seen. No midline shift or mass effect seen. The visualised intracranial blood vessels retain normal signal intensity.” This is all normal.
From what you’ve told us, it certainly seems like MS is a strong possibility, but it’s always best to keep an open mind and wait to see what the neuro says. Hopefully you won’t have to long to wait.
In the meantime, I recommend that you ask your GP for a referral to neurophysio - they can be a big help with a lot of things, including balance.
Thankyou for posting. Have been to neurophysio. The physio has discharged me until my appointment with neuro as she was concerned with my balance and walking. I scared her at my last appointment, nearly passed out with the physical exertion. So she said she will write to neuro dr to pass on concerns. The physio said for me to use walking stick, but feel embarrassed. The last eighteen months has been hell with infections and surgery. Urology want to do an op on my bladder to help. So life is tough at moment, but not worst case senario. Thankyou Karen for your reply.
Shame about the physio - I guess you need to take things slower, and wait till it’s a better time for you.
Please don’t feel embarrassed about the stick. If it helps, think of it as a way of helping others to understand that they need to give you room, not get annoyed when you go slow and so that they don’t make stupid assumptions that they’d feel embarrassed about themselves (e.g. that you’re drunk). And if that’s not enough, maybe consider getting a more trendy stick, e.g. a walking pole?
Better to be a bit self conscious, but be safe and still able to get out.