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also new and confused

Hi all and thank you to those of you that take the time to reply and work with this site. I am very confused as to what to think at the moment. About 3 years ago I developed a problem with my lower back and could not urinate at all and was in excruciating pain. I was taken into hospital and cathetorised, had an mri scan of my lower spine only and told I had slight degeneration of 2 disks but nothing that should have caused that amount of pain. I left hospital after tracktion and pain relief and slowly learned to walk without agony and saw a physio who wrote me off as a chronic back pain sufferer. I excercised as I could and after a few months I forgot I had even had the problem.

About a year later my right hand suddenly spasmed into a claw and I couldnt release it for hours. i went to the doctors and he poked me around and concluded it was due to a lump under my arm. As my mum had just had a mastectomy due to breast cancer I was given an urgent appointment for surgery and had it removed a fortnight later. Meanwhile my ‘claw hand’ had resolved but yet my fingers randomly spasmed and had tremors and did decidedly odd things. I had the surgery which fortunately was what the surgeon called a massive lipoma and was left with very little use of my right arm and exruciating pain in my top of arm, side of face and shoulder blade. I was told this was probably due to damaging my intercostial brachial nerve and was irreparable. However, i researched and excercised and though i still get pain in my face occasionally and don’t have the strength I used to, I can use my arm. Indeed At the time I had a 6 month old baby so needed to ensure I could do what I could!

Sorry this is sooo long…

About 6 months ago I started getting annoying pins and needles in my left(good) arm and pain in my shoulder. This escalated and I presumed I wasn’t excercising enough because I have a 2 yr old so tried to walk more. However I also get pins and needles and annoying numbness in my leg and feet sometimes, something I put down to the lower back problems. - though I don’t have them anymore! I eventually was in so much pain in my left shoulder, had no feeling in my little finger and ring finger and constant pins and needles in my forearm and went to the docs who said I had rotor cuff damage and referred me to a shoulder specialist. I saw him who said it was def not a rotar cuff or shoulder problem and I had an MRI ONLY of my neck and shoulder. No results yet. Meanwhile I am having an embarrassing problem which necessitated yet another visit to the doctors, I am having difficulty knowing when I urinate and am leaking randomly day and night. I have had 8 children but have never had this problem before.

THe doc referred me to urology (appointment in a fortnight) and I get MRI results from the shoulder specialist on 2nd November. Whilst chatting to the GP however he said had I ever thought that I may have something ’ sinister’! Good bedside manner eh?! I asked what and he said he didn’t like to say but maybe it could be neurological.

My question is IF my MRI comes back normal which I fully expect, do I then go to the GP and tell him about the horrendous tiredness that is so alien to me and pins and needles and odd moving toes and fingers still being there or just wait. Oddly enough my newest bad arm is actually a lot improved over the last week and I have no idea why though I have been taking neurontin and tramadol so maybe this is just actually helping.

If you followed this then THANK YOU and if not,it helped me to write it down at least.

thanks to you all

Jacqui

Hi Jacqui and welcome to the site

You are one determined lady!!! Massive respect for getting yourself back walking and using that arm!

In my (unqualified, but semi-educated) opinion, you do need to see a neurologist (even if it’s just to rule neurological causes out). So, although it might seem like it’s hasty, I would go back to the GP and tell him about everything else and ask him to do a referral now rather than wait to see the shoulder specialist. The fact is that the MRI may not have been suitable to look for neurological conditions (different settings show different things), so a clear MRI from the shoulder guy may not mean a whole lot.

Your improving shoulder has made me remember mine - I could hardly move my arm for three months. The week it improved? The week leading up to my appointment with the shoulder specialist! Typical!!! This was before being diagnosed with MS so I wrote it off as another one of those “weird things” that I got from time to time…

I hope you get some answers soon.

Karen x

Thank you SO MUCH karen!

My question is, not knowing much about MS, do symptoms randomly go on their own anyway and come back somewhere, somehow, sometime? If so, I am confused as to WHY they go?

I absolutely LOATHED the MRI with a passion. I was in for over 2 hrs and had to come out 4 times as the pain in my lower back and my leg (which was annoying as my shoulder wasn’t the problem) was unbearable. The claustraphobic feeling was awful too. My problem also seems to be that I am a doctor, however I specialise in autism and in particularly, sensory issues but yet GPs and consultants see my title and presume I know far more than I do!

For the last 2 days and in particular today, I have a feeling of numbness/pain if that makes sense, in my face. It feels rather droopy but doesnt look it. Gabapantin isnt helping, despite me being dilligent with it.

I guess I am thinking outloud here in the reassurance that you lovely people at least understand.

I have a very stressful life and don’t want to appear to the GPs as a hypochondriac…I have been more in the last year than ever in my life, other than with my pregnancies. Maybe the shoulder guy will recommend a neurologist and so I don’t have to do anything other be compliant for a while

Meanwhile I hope everyone that is looking for answers, finds them soon and those that know the answer, deal with life and symptoms in the best way possible for them.

thank you once again

Jacqui

I know the “oh you’re a doctor” thing, lol, however in my case it’s a PhD. Rather usefully in (vision) neuroscience so I can hold my own when it comes to the brain and MRI (my neuro and I have had the occasional spat about NHS MRI protocols), but I know diddly squat about a whole load of other medical-related stuff!

Rather ironically, one of the few constants of MS is its unpredictability. Relapses start because of new damage to the nervous system. They remit when the nervous system has worked out a way around the damage or when it has managed to sufficiently repair the damage to use it fairly normally again. As time goes on, our bodies become less effective at these strategies, so the degree of residual symptoms increases. (Different people have different capabilities to heal demyelination, so people stave off residual damage at different rates.) Symptoms come and go too: because of the damage and re-route/repair process or because something is exacerbating an incompletely repaired area of damage (e.g. heat, fatigue, a virus or infection) or simply making you notice it more (e.g. lack of distraction in the evening when everything’s quieter).

There are some really good booklets on MS that are free to download from here and from the MS Trust website. Beware of other sites - some of them are really dodgy!

I’m not sure that gabapentin and other neuropathic painkillers are all that great at treating numbness :frowning: Better with pain. You could maybe try upping the dose? (Best check with your GP first though.)

It could be too early to be thinking MS though. There are a surprising number of conditions that cause these sorts of problems. Definitely get to a neuro though so you can have the proper tests.

Let us know how you get on!

Karen x

Thanks Karen,

Yes mine is a Phd too…hence the frustration at it constantly being assumed it is medical. Yours must be very useful but yet sometimes knowledge can be a double edged sword I guess

Your explanation of the remitting times makes a lot of sense. My face and shoulder is soo painful and my eye so blurred that concentrating on anything right now is very hard. Not easy when I am meant to be still reviewing papers and yet I am falling asleep my 8.30pm too. Apparently it is 5 years since my back problem and hospital admission. Doesn’t time fly!

Would an mri of my neck and shoulder be unlikely to show up lesions if that is not what it was ordered to look for? My GP only mentioned MS and I have to admit I have suspected it for a couple of years silently as my mother in law has it so have heard and seen her symptoms but tried to ignore my own for fear of ‘joining in’!

thanks once again. This really helps.

Jacqui

Different settings for the scanner give images with the same type of matter as a different shade of gray, e.g. pale / white on one type of scan, but gray on another type of scan. So lesions show up well on some scans but not on others.

I have no idea what the protocol for your shoulder might include, sorry. Chances are that there will be a variety of types of scan, in which case one or two might be good for spotting lesions, but I really don’t know. The best type of scan sequence for spotting lesions in the spine is STIR. T2 & FLAIR are OK, but not as good. You could always ask, when you get your results.

I’ve got a feeling you might be waiting till you see a neuro though. Could be wrong though; wouldn’t be the first time!

Karen x