Neurological symtoms from anti tnf

salamander

I met my new rheumy today and she was lovely. Was slightly dreading the appointment as I knew my old one for a long time but she was extremely thorough and explained everything in detail.

I'm off anti tnfs for life as I've had neurological symptoms. She is referring me for an urgent appointment with a neurologist to see if they can find the cause. The one thing she is really checking for is MS as anti tnfs can cause demyelination of the nerve fibres giving you the symptoms. I hope I haven't got it as don't need another condition.

I phoned healthcare at home to ask them to collect my unused Enbrel and they said 'we can't reuse it you know' and they would have to check with the hospital first. Which is ridiculous as I have every right to ask them to take it. In any case, I can't use it either!

villier

Oh, salamander I am keeping my fingers crossed(well trying to) for you that you don't have a neurological condition on top of everything else, I have a very rare one and it is not funny, hope you get appointment soon let us know how you get on........................Marie xx

salamander

Thank you Marie, my sympathies to you too.

It's the last thing I need. However, I am reassured by my new rheumy and I've got confidence in her. It will probably be a while before I know anythings as will have to have MRI scan, and we know how long you have to wait for those!

mig

Fingers crossed for you . Mig

stickywicket

I'm very pleased about the new rheumatologist. It's so important to gel. Mine retired a few years ago but my new one is very good and her registrar is a soothing sight for any achey joints Worth going just to see him alone.

I'm sorry about the anti-tnfs though and I do hope there's no permanent damage done. This will be a worrying time for you.

I can see that they won't be able to re-use the enbrel. Would the local chemist take it as with other meds?

dreamdaisy

Oh Salamander, I am sorry. It's good that you have found a rheumatologist you like (getting on with the consultant is always a boon) and she is being thorough - I hope the appointment comes through sooner rather than later so that the ghastly waiting doesn't go on for too long.

As for the Enbrel I don't know what to advise - Sticky's suggestion is a good one, I know that my local chemist has a fridge to store certain meds so they might be able to help with the disposal. DD

salamander

Thanks everyone, your support is much appreciated. I expect HAH will collect eventually but I might wander up the chemist and ask later. I've also got a massive sharps bin to go as well. At least I can turn off the very noisy & massive electricity consumption drug fridge. Though I'll keep it for overflow for Christmas etc.

My new consultant is young and 'at the cutting edge of research' according to my last one. She certainly seems to know her stuff and she explained very fully what each and everything thing. She spent about 45 mins with me. I'm hoping that whatever it is is mild and if it is Enbrel induced, shouldn't cause any further damage.

stickywicket

I'd be hoping that, too. No point in dying a thousand deaths by fearing the worst when it might never happen. We need all our energy for the stuff we know is real and needs dealing with. I'll have my fingers crossed for you, salamander.

salamander

Thank you sticky!

Toots

Hi salamander x

Just making my way around the threads now I've delurked lol, and wanted to say firstly that I'm so glad your new rheumy has impressed, that must be so very important. I will be keeping my fingers crossed for you that everything works out on the neurological front x

salamander

Thank you toots. Welcome to the forum. It might just be a blip but I'm not sure. My rheumy says the spasms in my finger are 'trigger finger' but I'm also getting them in my toes. She says it's a sign the arthritis is active.

justinbarrow

Not good to here this - Have they given you a different medication to replace the embrel. Hope things work out.

salamander

Thanks Justin. She's not going to give me anything until after I see the neurologist so just steroid jab and oral steroids. Not great but all that's on offer at the moment.

DebbieT

Salamander I'm so sorry to read this!! I had a suspected TIA in May & had a ct scan, that showed a 'lesion' & they did the MRI within a week so I really don't think ul be kept waiting long for ures, especially as ure being referred as urgent by another consultant!!

Take care ((((Hugs)))) xxx

salamander

Thank you very much Debbie.

Was the lesion demyelination and have the symptoms gone away? Did they come to any conclusions about what had happened to you? They say MS symptoms can go if you stop the cause of it. The depo-medrone injection I had on Monday is the same treatment you get for MS in the first instance and I have noticed the tingling appears to have abated.

I'm now thinking about all those things I've dropped - full bottle of olive oil smashed on the kitchen floor, no sooner than that cleared up, a bottle of beer followed. Glasses galore at dinner parties (though thought might have been the cataract problem). Also thinking about my memory and spasms in my feet. Might all have another cause of course!

I really appreciate everyone's support and concern.

DebbieT

Hi,

No, I'm sorry, I put my experience to show I think ul get seen pretty quickly not as a comparison to ure possible diagnosis!! I'm really sorry.
Mine turned out to be a large cyst in the pineal gland, they intend to scan me annually to keep an eye on its size but it was unrelated to the symptoms. The Neurologist diagnosed me with complex migraines. They can be so severe in some people that it paralyzes one side of the body completely until it's treated!!

Btw, I thought my tingling had gone but wen the neurologist examined me she was using a needle & pricking me with it n my left side, mainly my face & forehead were still really numb but I couldn't tell anymore, it was so odd!!

The brain is an amazing thing but so complex!!
I REALLY hope you get answers asap. Hugs.xxx

salamander

Thanks Debbie, sorry I did sort of understand it was a different diagnosis but had hoped you had a bit more info to offer It must be a relief to know why you are getting your symptoms.

My rheumy hoped I would be seen before I go away on 5th September but not heard anything yet. I don't think it is urgent in terms of needing treatment for whatever it is (at least I hope not) but does impact on my arthritis treatment. I was a bit premature in saying the tingling had gone. I don't get any numbness as such, i.e. I can feel touch.

Thanks for sharing your experience. It's a lonely place out there in terms of this illness at times!
xx

DebbieT

How are you feeling? Uve been in my thoughts often. Has ure appointment come thru yet?

((((hugs)))) xx

salamander

Hi Debbie, that's so sweet of you! I haven't heard anything yet and am trying very hard not to think too much about it. Easier said than done, of course. My gp was quite reassuring when I saw her today. Just hoping there is another cause for the problem.

How are you doing?

DebbieT

You never know ... You might have a Pineal Gland Cyst too
We gotta laugh at these things I think (I hope you do too :shock: ) or we'd drive ourself around the bend!!

I sincerely hope there is another cause & that you get ure scan date thru asap. I'd, personally, ring ure Rheumys secretary to check it's gone as an urgent request!!

((((hugs)))) Stay positive xxx