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A long journey that has ended back in limbo :(

Hello all,

I’ve been following this forum for a while now, I recently became a member so that I could post once I’d summoned the courage. Well here it goes.

Please bare with me if I ramble, I’ll try my best to keep it simple. I had corrective scoliosis surgery 4 years ago. Post op, once I’d fully recovered I had 1 whole year of pure bliss. Completely pain free, able to get on with life without limitations and be the mum I always should have been. Then one day out the blue, I started to experience pins and needles from trunk down (started only in hot bath, then progressed to any random time/position etc) I didn’t think much into it. Over the next couple of weeks lots more strange sensory issues were coming in thick and fast. (Intense burning sensation, wet trickling down legs, stabbing electric shocks, creepy crawly arms, tingly scalp and lips, severe cramping of muscles, just to name a few!) I went and saw my orthopaedic surgeon, he gave me nerve blocker injections which gave me no relief, In fact I was in horrendous pain for the 10 days following. I just accepted this was something I’d have to put up with now, my 1 year of bliss was over and I’d have to get used to my new normal. Then I started passing out at random times, which was quite scary. I thought maybe I’m stressed, maybe I’m not eating enough veg (?!) just clutching at straws to not worry myself. Keep calm and carry on, as you do! Next was severe chest tightenings. I endured 5 days of constant chest pain, it got to the point where my husband took me to A and E. They kept me in, then released me after finding no apparent cause. So again, I kept calm and carried on. Next my eye sight went blurry. All of a sudden, I was fine, chatting with a friend. Next I could barely see through the blur and there were strange lights, squiggles etc in my visions. This lasted for about an hour. After then, it would come back suddenly but not as severe. Then disappear as quick as it came. After this I was left with a permanent black spot in my vision. I went to the optician, was told I had scarring on my retinas, so that’s why I experienced those symptoms and now have a black spot, flashes/floaters. At my next appointment with ortho, he said he couldn’t find any reason for these symptoms on my xrays i.e no trapped nerves, deterioration of rods in my spine etc. He suggested I ask my doctor for a referral to neurology. Well, I’m now another year down the line having been backwards and forwards to top Neuro hospital. I had a range of bloods taken, all cane back normal. My Neuro mentioned the possibility of ms, my reflexes were abnormal, balance, etc. It had never crossed my mind till this point. It suddenly all made sense. For the last 5 weeks, I’ve been waiting patiently for vep, ncs, temperature test (although the guy that tested me said I’d failed the test, but wait for written results) and most importantly my mri results. Today I received a copy of the letter he sent to my doctor. It simply said “here is a report of her mri. There is nothing more I need to do at this stage”. So I’m assuming this means he no longer suspects ms, that the scan was clear? Why no letter to me explaining this? And now what, I just live with my unexplained symptoms? Keep putting up with them getting worse? I’m back at square one of just not knowing, not understanding and just keep living with the pain? I could cry. I’m obviously relieved at the prospect of it not being ms but I now feel more in the dark than ever. Any wise words of wisdom to get me through? Has anyone here been through similar and overcome it, or had some answers? If you’ve made it this far through my ramble then thank you. I truly appreciated the time taken and any replies I may receive. Thanks.

I am a little confused it doesnt take much. You wrote:

For the last 5 weeks, I’ve been waiting patiently for vep, ncs, temperature test (although the guy that tested me said I’d failed the test, but wait for written results) and most importantly my mri results. Today I received a copy of the letter he sent to my doctor. It simply said “here is a report of her mri. There is nothing more I need to do at this stage”

Is that from the NEUROLOGIST?

Did you have the VEP test?

Something is obviously going on, whether or not it is MS is pretty immaterial, something obviously is, and they need to find out what it is.

It may be the aftermath of your surgery you never know what they can trigger with these things.

Also the more you worry and stress over it the more it would exacerbates symptoms so try i know its hard to chill out and just take a deep breath. Talk to your GP and ask him what is next. There was a report of your MRI it would be interesting to see what it said.

The neurologist wont do anything if it is an isolated syndrome. It would be a matter of wait and see. MS usually doesnt appear like that with ongoing stuff. It is more a relapse phase, then a phase of healing, etc.

ALTHOUGH mine started a bit hap hazard lol.

If the neurologist did write the above then its a wait and see approach. Perhaps you MRI was clear. You need to discuss it with your GP he has the report.

Your symptoms believe it or not can be from a lot of different things even M.E. yes which can be triggered by surgery and viruses. (not saying that is what it is, but it could be other things)

You need to find out what was on the MRI, so i would see your GP and discuss your next steps with them if it was me.

good luck, but try to stop stressing as it will make you worse and sick.

Hello,

thanks so much for your reply. Yes, that was from my neurologist.

Literally that was all the letter said, those two lines, that’s it.

And no, I’ve not received any results for vep or any of the other variations of tests they did that day.

I assumed by hearing nothing they must have been all normal?

I will be phoning my gp this morning and making an appointment to discuss my mri and see if he has my other results too

Im obviously now just expecting him to say it’s all fine and dandy and there’s no further action.

There has been talk of Gabapentin to hopefully settle my sensory issues, so if nothing else comes of my appointment at least maybe I’ll come away with this medication to disappear some symptoms? I live off tramadol at the moment, it’s not proving very effective mind you.

and yes, I notice my systems increase when stressed. Yesterday was a very emotional post I must admit, it’s just frustrating. I don’t usually let it get the better of me. Sorry you had to read my rant. I don’t really have anyone I can talk to, I try my best to mask my symptoms (the ones I can anyway) from my husband, I don’t want him to think I’ve lost the plot. Seeing as ‘theres Nothing wrong with me’ do you get what I mean? There are days when I convince myself I’ve gone mad. Don’t want him thinking the same.

Crossing my fingers that I get some clarification from my gp, or if nothing else, some Gabapentin to hopefully just carry on as normal. Thank you for your reply, I feel better after talking it through with someone. You say yours was a bit hap hazard, how are things for you now?

I was going to answer you with much the same as Crazy Chick has said, see your GP. The neurologist enclosed the MRI report. This should be the report from the radiologist, and will hopefully be written in a form comprehensive enough for your doctor to give you more information. Maybe the other results too.

If it doesn’t, try phoning the neurologists secretary, explain that you don’t understand what the neurologist is saying, ask for a more detailed report from the neurologist as to the results of all the tests.

If you get nowhere, try contacting the Patient Advice and Liaison Service (PALS) for help. You should be able to find their contact details on your hospitals website.

Best of luck.

Sue

Hi sue

thank you for your reply. I have an appointment with my gp tomorrow, I’m really hopeful he can explain the neurology report to me and the reasons why there is nothing more that can be done. If I’m still non the wiser I’ll phone Neuro secretary and hope to gain some info from them. In the mean time I’m hopeful that doc will give me the Gabapentin and maybe I’ll get some relief from the symptoms. The burning pins and needles are ever present, heat is usually a trigger but also being cold sets them off too. I get random patches of ‘goosebumps’ that hurt like hell, it’s bizare! I stupidly managed to scald myself with a hot water bottle due to my numb feet, I put my foot inside the cover hoping it would bring the feeling back but the water was leaking and I had no idea, it didn’t end well! Have you any experience with Gabapentin? Will it help with the numbness/pins and needles? I’m so hopeful for something to just make it all vanish. Amitriptyline was ineffective for me, also gave me bladder problems. Doc was reluctant to give me anything different until we’d heard from neurology, so now that we have hopefully I’ll find something that works. Thank you for taking the time to reply, I appreciate it :slight_smile: