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Confused

Sorry if this is not appropriate to post this, as it is not suspected as MS, although it is not clear to anyone what the exact problem is.

The symptoms at the start (November) were two weeks of gradually worsening testicular pain, of which urological causes have subsequently been ruled out. Because of this I was placed firstly on Codeine and then Tramadol for pain relief, of which the latter was effective. About two weeks after this (towards the end of November), I started to develop shooting pains and numbness/tingling in my right leg, with slight weakness. This, along with urinary hesitancy, increased urinary frequency and the testicular pain continued to worsen till the start of December when I was placed on Pregabalin, and subsequent increases in this have led to improvement in all pains. However, around the middle of December I started to develop similar numbness/shooting pains (albeit milder) in the left leg, accompanied by slight incontinence and difficulty achieving an erection. I had been referred to orthopaedic services prior and as they contacted me for a telephone consultation as these new symptoms occurred, referred me to A&E. An MRI scan here of my Lumbar and Sacral spine was entirely normal and any Orthopaedic cause was therefore ruled out. I was then (around 21st December) referred to Neurology.

As mentioned, the Pregabalin increases had helped the pain, and this continued until the 29th of December when I suddenly developed a severe burning pain in my upper back (this was so tender that I could not even lay down on it, and therefore kept me up this night). After this occurred all the other pain symptoms again deteriorated when they had been responding to pain relief.

I was then contacted on the 3rd January by Neurology who said they wished to see me within two weeks, and also saw the GP who increased the Pregabalin which again helped. Again unfortunately this week the pain worsened again, brining the symptoms to around their respective worsts, while I also developed pains in the neck and upper arms. This week I have also had issues sleeping, with 4 hours sleep on Monday night, 0 on Tuesday and 2 on Wednesday night. I have had some issues with sleep during this due to the pain but not this bad.

I then had my first Neurology appointment today. The first thing he said when I walked in (when we had only exchanged greetings) was ‘You’re a lot better than I expected’.

Throughout the appointment (which lasted around 30 mins in total) he continued to downplay any symptoms I mentioned. He then said in his view the likely cause was inflammation in the spine, and he would organise an MRI to check for this. He said this would likely take 1-2 months, with another up-to a month on top for the results. He said the process would likely take this long as ‘this isn’t interfering with your life’. I then obviously disputed this and explained how it had, but he still said it hadn’t interfered significantly. I’m a 19 year old male university student, and the GP and university decided that the symptoms have impacted my university work, and I have been given extensions/exemptions on work where appropriate. Furthermore, the symptoms have significantly impacted my sleep (especially recently) and difficulty maintaining/achieving a full erection clearly interferes with my life. I struggle to walk longer than around 10 minutes without developing a limp, I struggle to concentrate (due to pain and pain relief) and also feel very fatigued (probably due to pain relief).

I’m currently taking 300-400mg Tramadol per day and 450mg Pregabalin.

I know I’ve been lucky so far to have referrals dealt with quickly (much quicker than others), but I am worried that now these will not be taken seriously (at the appointment today I was told that even if inflammation was not seen on an MRI, it would still be presumed to be the only explanation and therefore we would just have to give it time to heal, and that it wouldn’t warrant steroids to cure this as its apparently not that bad).

Again sorry if this is not appropriate here, but its been two months now of pretty bad symptoms and we seem nowhere near to finding the cause, and again now I worry these symptoms wont be taken seriously by Neurology.

Thanks.

hello there

continue seeing your GP to discuss symptoms because it’s good to have them on your medical records.

also consider mindfulness meditation which has helped me get to sleep, although it’s not supposed to!

rotten luck for you to have all these medical mysteries when you’ re only 19 and at university.

continue to call on this forum too because there are some very knowledgeable people here (i’m not one of them btw)

please continue with uni and accept the help offered.

Nytol helps me sleep, may be worth a try.

carole x

[quote=“catwomanCarole58”]

hello there

continue seeing your GP to discuss symptoms because it’s good to have them on your medical records.

also consider mindfulness meditation which has helped me get to sleep, although it’s not supposed to!

rotten luck for you to have all these medical mysteries when you’ re only 19 and at university.

continue to call on this forum too because there are some very knowledgeable people here (i’m not one of them btw)

please continue with uni and accept the help offered.

Nytol helps me sleep, may be worth a try.

carole x

[/quote] Thanks for the reply Yeah I keep seeing the GP around once per week, he’s been pretty good so far and the referral letter was fairly detailed and accurate so not sure why the person from Neurology today was surprised how ‘good’ I was. I’ve tried the herbal sleeping pills before but they don’t seem to do anything much.