URGENT advice needed please. CNS involvement both legs?

[KathinAyrshire]

Only been on drugs to cope with flares for last seven months, no 'maintenance' drugs. For last five months, slowly getting worse involvement for both legs. To start, soles of both feet felt like they were 'sore', the kind of feeling you get just before pins and needles really get goeing, can only describe this as a strange sensation. This feeling, over the past few months has spread from the soles of my feet to way above the knees. Anyone else have anything similar. Am seriously concerned about losing sensation in legs as I have already to a lesser degree in both hands. Living in the boondocks in Scotland am about to ask GP to refer to St. Thomas's as this would seem to be the centre of excellence for the country. Any experiences of St. Thomas's welcome. Urgent as seeing the GP tomorrow and intend to put MY views for the first time in this process.

Bless you all out there and thank you so very much for being there, I no longer feel alone.

[Sher78]

Just a thought, have they mentioned anything such as connective tissue disorder? Just a thought as I have lupus, Mixed Connective Tissue, Rheumatoid Arthritis, Raynauds, Sjogrens, Antiphospholipid & restless leg & I suffer terribly with my feet, wrist, hands, legs etc mainly due 2 MCT, my tendons, muscles & ligament constantly feel like they're being 'pulled' & 'stretched' & r about 2 snap & sometimes they just 'go' & I drop anything I'm carrying & can't hold anything, same with my legs, they just buckle. This has been happening 4 years but in the last 2 it's been confirmed that I have a lot of CNS involvement so in my case I can honestly say the problems were there b4 everything with my nervous system kicked off. Just something 2 think about ;0) x

[KathinAyrshire in reply to Sher78]

Dear Sher

Nobody has mentioned MCT, I don't seem to have muscle and ligament problems apart from both hands which swell and 'claw' and the wrists twist beyond normal range in a flare but out of flare have normal range of movement but not sensation.

Many thanks for the advice.

[Sher78 in reply to KathinAyrshire]

Thought I'd best mention I get tingling, pins & needles & numbness regularly in hands, legs & especially feet too but as 4 swelling (touch wood) I don't really tend 2 suffer with that in my wrists (only my ankles & rarely fingers) but have never had any 'clawing' x

[KathinAyrshire in reply to Sher78]

Dear Sher

You describe the sensations in my feet and legs brilliantly, any diagnosis on this from your rheumy? Since last night this sensation has gone from just below knees to half way up my bum and am a little concerned on its progression?

Love

[Sher78 in reply to KathinAyrshire]

Mine is more due 2 Raynauds as it totally screws up u're circulation, but like I said, I have Sjogrens, APS, Restless Leg etc so it COULD b attributed 2 1 of the other conditions I have. I also get lower back pain (always believed 2 b due 2 sciatica caused by torn ligaments in pregnancy & giving birth but now not so sure) & when the Raynauds plays up it seems 2 set that off too but hey, u never know with lupus & all her friends :0/ x

[Tigerlily4]

The "no maintenance drugs" is puzzling to me Kathin. There may well be an excellent reason why you're only treated while in flare but I've not come across this before and would be really interested to understand the thinking behind that if you don't mind sharing. And what do you take while in flare? Does that help the strange sensations in your feet and legs or have no effect?

[KathinAyrshire in reply to Tigerlily4]

Dear Tigerlily,

No maintenanced drugs apart from flares because rheumy and dermatologist don't seem to be on the same page. In fact dermatologist wants chemo drug as rheumy hasn't prescribed anything apart from quinoric which he knows does not work, so dermatologist prescribing for Lupus. GP doesn't want to cause anyfurther confusion so by trial and error we have worked out that diclofencac and preds during flare work the best whilst waiting a minimum of six months between appointments of specialists. (This for the last 13 months). Mostly diclofenac and preds work during 'normal' flare, only about 72 hours of so of excrutiating pain in hands which lock and swell alarmingly two occasions when only injections will help. Neither of these drugs are beneficial for legs or feet which are progressively getting worse, which is why I was wondering about CNS involvement with members of the forum.

Any ideas?

[Tigerlily4 in reply to KathinAyrshire]

Oh, OK ... now I get the gist but no maintenance drug is a strange concept to me since keeping permanent a lid of some kind on inflammation is generally what keeps SLE under control and us well. Quinoric could be seen as a "maintenance drug" if you've been taking it constantly but antimalarials don't work for everyone and I've recently seen lots of complaints about that generic brand of hydroxychloroquine being ineffective in comparison to previous generics offered. I gather it's an inferior substitute for many that the NHS now uses in order to keep down costs. Some local health authoririties will allow you change to the much better Plaquenil - others won't. There are also Quinacrine and Mepacrine left for you to try of the antimalarials (although I'd avoid the latter because of possible mental health issues). Anyway, since Quinoric's not bringing you any relief and antimalarials are known not to suppress the more rampant lupus skin conditions, I don't understand why it hasn't first been suggested that you take a NSAID like Diclofenac at a lower dose constantly rather than merely blitzing flares at much higher doses with the addition of steroids. A maintenance dose of a suitable NSAID might not only keep your skin condition and other inflammation/joint problems under control but keep you feeling reasonably well for many years with the least side effects possible. If that's not enough to suppress major flares, then up the dose of your NSAID during those times or top up with steroids if absolutely necessary. The most important thing other lupies have taught me is to always manage with the least medication possible. The disease is progressive and drugs tend to become less effective over time. Try not to exhaust all your options too quickly. The most important thing the disease has taught me is not to leave things until they become intolerable before taking action. It's possible to cross a line where the maximum amount of everything you can take will be too late to stop a massive flare. Listen to your body! x

[Purpletop]

I have similar sensations, both in feet and hands. I am concerned about CNS lupus too. The rheumatologist sent me to have an EMG and nerve conduction test, which I had. Apparently the nerves are fine but he believes that the muscles are not responding as they should and he thinks the problem comes from the neck, not lupus. He will suggest an MRI of the neck. Hmm, I'm not convinced but I will see what that test shows. Good luck.

[tintin49]

whta is cns please.

[Sher78 in reply to tintin49]

Central Nervous System :0)

[tintin49 in reply to Sher78]

thanks x

[docguide]

Ayrshire has access to good units in Scottish Academic Units in Glasgow and Edinburgh.

Useful to ask GP to refer asap for both Rheumatologist and a Neurologist's opinion locally first.

[karlyt]

I was diagnosed with lupus at 15, along with APS and all the attributing factors etc, but it wasn't until I had the diagnosis of CNS that I began noticing strange sensations in various areas of my body. It's almost... numb, but kind of has a tingling sensation as well as being able to feel the pressure if it's pressed upon. Do you find that? It may be worth having your nerves tested to see how they respond? I hope you aren't suffering too much

x

[Sher78]

The joys of lupus!

[notoverthehill]

I travel to Manchester Royal for treatment for vasculitis and over the past four weeks have been unable to walk due to leg cramps. New to me but i am getting treatment for Fybro myalgia.The treatment I get is marvellous and I shall be seeing the consultant for osteoperosis this week and in two weeks will travel again to Manchester to see Prof Bruce at Rheumatology and Dr Zamensky Neurology hope to get some help fro them.Ii have already had rituximab infusion.

I will let yoou know what they suggest as it seems to be a common problem with Lupus/vasculitis.

A long trip from Renfrewshire but worth it .