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Weird symptoms

Hello All

My history is an abnormal MRI in May 2014 (lower pons) following tingling/pins & needles in right leg (fleeting not permanent). Re scan in November was normal but between then developed tinnitus, very rumbling guts (citalopram??), slight tight feeling on right tricep, first thing in the morning tightness in right knee/shin (varicoise vein op July 2014 ??) but consultant said all ok

Since then have had

little buzzing sensations (last < 1 second) in right foot, ankle

further tightness of right tricep/shoulder. Also occasionally wake up with indentation type marks on right upper arm & shoulder - have told GPs who do not seem concerned, find it hard to believe it is not linked to my arm - I think it might be nerves and therefore worried by pons lesion has spread to my neck or spine

continued rumbling guts on and off, seems to be better now I’ve reduced the citalopram

waking up at night for bathroom (once may 3-4 times per week)

pins and needles in fingers (sometimes one hand, sometimes both) but goes after movement. have bumps that maybe look like Ganglion cysts not sure of these could cause it. GP did a basic test for Carpal tunnel and did not think it was that.

I am currently undergoing blood tests and wanted my GP to start with a fresh sheet of paper was the first referral was made on the cuff without much general clinical involvement (no other tests)

In short I have a lot going on, think the citalopram and general anxiety have not helped but cannot help feeling something is wrong - the buzzing, finger pins and needles and right arm tightness are the most worrying not in terms of impact but what they might mean. Could i even be looking at something like a bulging disc with the problems all on one side of my body ? I know these things are a nightmare to diagnose and get a grip on but any insights appreciated !

C

Hello C

Have you been seen by a neurologist? Sorry if I’ve missed that.

I would be asking my gp for a neuro referral.

The symptoms you describe could relate to a trapped nerve but you mention that first scan being abnormal.

Anxiety can aggravate things.

Regarding the toilet issues, you can self refer to the continence nurse.

Not sure what else to suggest.

Good luck

xx

Had same brain MRI results which were signed off as ok in November but 1 lesion on c spine. Now a LP, neuro is not mentioning anything else than MS but those around keep telling me it will ok. With a light banding near my knees at times can’t feel there is any alternative, it seems from my experience MS is an easy diagnosis despite mild more sensory type symptoms :frowning:

Am on a course of oral prednisolone which has maybe helped a bit but seems to have increased my urinanation pattern in the day but maybe irritated by caffeine and a dose of anxiety ok overnight unless that is another MS symptom rearing its head. Trying to be positive and some friends have helped my moods with chats as family is in ostrich mode (head in the sand) and everything is normal.

am I am being too jumpy to conclusions of the probability of MS?? Could it really be anything else?? Did not question the neuro last time as too shocked as had even convinced myself this really was in my head after family advice (how will I handle it when told nothing is wrong) Am seeing my GP to get referred back for CBT on acceptance counselling as seems best case of no diagnosis now but seems certain to progress in the future.

C

Families tend to do one of two bird-related things at this point: ‘ostrich’ or ‘headless chicken’. Neither is particularly helpful, both are completely normal and both tend to mean ‘we love you and we don’t know what to do and we desperately want it all to be OK’.

It sounds as though yours have gone for ostrich mode. Don’t be surprised to see some headless chicken at some point!

One of the hardest things can be managing family reactions when one’s hands are already full with managing one’s own. But it can also be quite a welcome distraction in a way: takes a person’s mind off his own troubles for a bit.

I’m not quite clear how things have been left between you and the neurologist. What, if anything, have you been dx with? Clinically Isolated Syndrome? Or they just don’t know and you have to wait and see? Or something else? Any road, it’s a tough time for you. Hang on in there!

Alison

Hi Alison,

no diagnosis, letter to GP was ??? RRMS so suitably on the fence. I am having an LP in 3 weeks then see.

I can understand the ostrich thing but being told I am deluded there is nothing wrong when the last MRI was abnormal and means more tests can hardly be seen to be a good thing so any rational conversation is gone out the window. The fact that these abnormal scans put me probably in a high risk position seems to be being ignored.

To be honest I cannot influence or worry about others who are so closed minded. I. Have not told other parts of family (my blood side) as that would definitely be the headless chicken mode and I cannot cope with both beyond my own inability to manage myself!!!

thanks

Chris

Having now had a further conversation with my neuro he started off by asking “maybe we don’t need to do a LP” then changed his mind as this would potentially allow full closure. he then said that way he could start treating me as he has a low tolerance level now to MS so though my symptoms and impact are all very mild. So it now seems pretty definite but surely a negative LP would be a good result as it would show maybe less progression (though not guaranteed). The sterioids (oral prednisolone) has seemed to be effective just see how it keeps things at bay for.

I am now at least a big more prepared mentally but others around me are still in denial or still genuinely believe it is really something else .but I have decided to leave them in peace as nothing to be gained, after all you you can’t hide forever.

The neuro mentioned if it was a yes then moving on to DMD - any views on what is preferable ? I am more worried about 1) effectiveness 2) impact of side effects - currently I am in very good shape so this seems like more a medium or lonmg term worry so i am keen avoid things with severe side effects such as things that make you run to the toilet every 10 minutes or that cause fatigue and impact my ability to work and live

one symptoms/sign related question - has anyone or is it possible to experience clicking/crunching knee caps from ms? It is not painful but does n’t sound great. My GP said well that could be anything but given some of my recent symptoms have been a puffy/swelling feeling near my knees I cannot help think it is related unless this is still all a bit of a mistake and is more of rheumatoid arthritis situation??

alll views and comments appreciated as ever

C