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4years, still don't know, anger, relief.. Confused

At my wits end with pain, doctors and neurologists that really not seem to listen or care. Live in Scotland and unsure if its me, not explaining correctly or just ‘thats they way it is ’ I have had 2 LP’s neg. 2 MRI, both showed lesions, but in different places. I am in constant pain, numbness tingling daily and would b worse if it wasn’t for good old gabapentin ’ talking to the other women at the hospital and the world and their wife seem to b on that’ Been told by my doc, yes good news your LP came back neg and your evoke as well, to which I replied’ that’s fantastic news, so why am I talking these pills and in so much pain, - they didn’t have an answer and worse said u need to speak to your neurologist, to which they reply, oh it could b worse… Can you tell I’m angry, apologises but the only time I actually felt normal was in hospital talking to the other women, and discussing our symptoms, I didn’t feel like a fraud or a freak… This has been going on for over 4 years since my first official episode, any suggestions, help, anything really… Just feel like a fraud and that although I look ok, my arms legs burn and ache down my left side and all I would like is some answer… Too much ? Many thanks for reading my rant… fee

Hi Fee, and welcome :slight_smile: I’m intrigued by your MRI results: lesions both times, but in different places? That is very unusual! Can you tell me more? The tests that have come back normal do not rule out MS, as any decent neuro should know. So it sounds to me that you need a frank conversation with yours. Exactly what diagnoses are they considering? Exactly why have they not decided on one? If MS is the likely diagnosis, exactly what is preventing them giving it? Given the fact that LP and evoked potentials are not always positive in MS, why are they using your negative results to exclude MS (if they are)? Ask for details and not some dumbed down version - get them to properly explain their thinking, as if talking to a colleague. Between us on here, we can work out what appears to be incomprehensible. As far as your pain goes, I wonder if you’re on the right dose? The max dose of gabapentin is 3600mg a day. If you’re on that and still on pain, then it sounds like you need either a different med or an extra med. Don’t suffer in silence - there are things that can be done, if we ask. You’ll find plenty of people on here with similar symptoms and still waiting on a diagnosis, so lots of good company :slight_smile: Karen x

Hello Karen, Firstly Thank you for your reply. :slight_smile: Apparently I had one lesion, back of head right side. (Information from a different neurologist i had)That matched my first episode, facial tingling (none gone thankfully) and left side numb/tingles/burny on my left side arm/leg which i have been left with. My second MRI showed that lesion had gone, but another now showed. My neurologist didn’t go any further detail. As for the gabapentin take 300mg between 4 to up to 8 times a day(on a bad day) and recently I have started again taking paracetamol with Co-dydramol(10mg) as well, however I work full time and need to keep my head clear. That’s why I take the paracetamol some times instead. It’s like tooth ache. A consistent throbing, aching pain. The fatigue is a blooming annoying also. I read Another post talking about how fatigue cause symptoms to get worse… I had that on Monday, so tired and sore had to go back to bed for a few hours to ‘reboot’ luckily got a great manager. Thank you again and I have appointment for the neurologist getting posted out to me so a frank conversation will b had, I will just need to keep the heed. Feex

Hmm. A lesion at the back of the head would not cause sensory symptoms in the face, arms or legs; your problems with your arm and leg are more likely to be due to spinal damage. Have you had a spinal MRI?

Lesions do resolve, i.e. repair sufficiently well to disappear on MRI, but there are only a limited number of conditions in which they do this and new ones appear too.

It sounds to me that your neuros need to be much more upfront with their thinking.

Re pain: codydramol and the like isn’t usually terribly effective for neuropathic pain. It might zonk you out so you care less, but that’s not exactly a great solution! I think that gabapentin and other neuropathic painkillers work best if you take them regularly (they don’t work the same as other painkillers). So maybe talk to your GP about what dose to take every day rather than taking different amounts on different days and then, if you need to, use a bit of trial and error to find the right dose? If you end up on the max dose and you’re still in pain, then it’s time to try something else or something aswell.

I don’t know about not losing the heed; sometimes a wee bit of that is exactly what the doctor deserves!!!

Kx

Just a note to add co-dydramol can sometimes upset your bowels and cause constipation and as Karen said not the best for neuropathic pain (i was given it for my neck spasm last year)

Reemz

X

Think i have had a spinal MRI both times… they moved the cushion things on both occassions and me up more to get a look. Hmmm interesting about the lesion. To add to it they left my notes lying out on a desk next to me, anyone could have pinched them, but i went through them and took photos of some of the notes and letters. Was complete gobbledygook, but my notes about me so thought why not.(still none the wiser) Will try and steady my dose on gabapentin, but the more I take, the more fuzzy I get, and I wondered why I felt more chilled on the co-dydramol, :slight_smile: knew it wasn’t great for the stomach, but do find the more gabapentin I take the more bloated and iBS flares up. More pills to sort the other pills your taking,.i know antacids are out also. Can I say from you 2 alone I have had more answers than 4 visits to a neurologist. This site is great. Many thanks feex

Hi fee, firstly…you are neither a fraud nor a freak…so no need to feel like one.

My own journey to diagnosis was hell…over 14 years…I was dx`d with ppms for 7 years, then told no it isnt…then yes it is…then no it isnt.

I`ve seen 13 neuros…felt I was banging my head on a wall…not much faith in them now.

Current dx is spastic paraparesis/cause unknown.

One good thing tho`…not been discharged.

When I said I was disappointed, I was given 2 repeat…very painful tests…results were normal!

Hang in there hun.

luv Pollx