Lupus and neuromyotonia

[C-aches]

Hello good people. I haven't posted here before, although I have replied to other posts. I was diagnosed with SLE following a horrible acute illness including something akin to transverse myelitis in early 2018. Since last August I have developed increasing muscle twitching in both lower legs. It actually feels (and looks) like aliens are trying to escape from under my skin. This seems to be much worse at night and sometimes wakes me up 2 or 3 times. It will develop into cramps or muscle spasms that require me to get up and lollop about to try and straighten my crooked feet until the spasms pass. Basically the neurologist feels that this is autoimmune in origin and may be linked to Lupus, but I can't seem to find much information. Is there anyone out there that has experienced anything similar? Any replies appreciated! Thanks for taking the time to read. Stay safe all, xx

[tremarel]

Hi there yes I have neuromyotonia . I have had lupus since a child resulting in kidney transplant 24 years ago . After my transplant I was diagnosed with Neuro .Mine startered with my arm muscle twisting & bicep getting bigger at first thought it was diatonia but after loads of tests & hospital stays I was diagnosed . Over the years it changed with me going into spasm a lot especially if I sneeze or get spooked I go rigid. I tried having plasma exchange but didn’t do anything . Also tried all the meds like carbamazepine & all the ant epileptic drugs but hated all the side effects . My consultant was unsure if the lupus caused it or it’s just another autoimmune disease cos they say if u have one u can go on to have more & by god I think that’s it as now been diagnosed with myosotis , primary immune deficiency , fibromyalgia. The list goes on . I get fasculations under the skin but more of the stiffness & spasms.

[C-aches in reply to tremarel]

Hi Tremarel, thank you so much for your response, it sounds like you have really been through the mill. I am finding communication with my neurologist frustratingly slow, he has suggested vaguely that there might be some medication to help with the fasiculations and cramps, but like you, I feel that I really don't want to take anything more - I am on tons of stuff already. Do you have trouble getting going in the morning? My muscles are stiff and unreliable until I get going. If I lie in bed and try to stretch or exercise before getting up I get full blown cramps and spasms! I asked my Rheumatologist if the neuromyotonia is autoimmune, should the Methotrexate help? She is increasing the dose twice over the next month, so I will let you know if that helps. Hope you are keeping well in these crazy times, xx

[Krawlins]

Hello C-aches

Firstly I don’t have diagnosed lupus, my ANA was negative 1:180 but I’ve had a lot to contend with in my life and of course when I put the symptoms in Google it led me here where I seem to have an awful lot in common with you all but without the diagnosis.

I do however have the twitching in my muscles, nerves, tendinitis as well it started in my left leg mostly in 2013 and no one has told me the cause despite seeing neurology. Get it a bit in right leg but it’s 24/7 on the left, I’ve taken recordings to show Drs but I really only need to get them to watch my calf for a minute and they’ll see them. I have now attributed this constant twitching to my slipped disc of 2012, I should have had an emergency operation but it was two weeks too late and I figure I’ve been left with permanent damage. The spasms and cramps I get are at times intolerable, being woken in the night to a severe spasm in leg and foot is commonplace and as you know it is agony. My foot points down so sharply and the calf and ankle spasm at the same time, it’s not a spasm I can get out of either, just have to wait it out in tears of agony. The next day the calf remains painful. So I blame it on a spinal issue only because no one else has offered an explanation nor was I given nerve conduction tests on it but I am going to ask for these next time I speak to orthopaedics. I have arthritis in many joints and mild reynauds syndrome. I have asthma, am diabetic type 2 diet controlled due to cortisone injections in hip and back. I’ve had breast cancer, the emergency slipped disc, a hysterectomy, frozen shoulders, multi arthritic joints and rosacea and periods of hair loss. I have sinus issues and digestive issues diagnosed as IBS.

Personally I feel they are all in some way linked to one disease.

I’ve tried quinine but heat pads and a warm bath are best for me. I took magnesium for a while but didn’t notice any let up in the twitching. I sometimes move and feel the spasm about to start, if I flex my foot quickly I can prevent it now, if I’m awake.

Do you have any lower spine issues? I’ve even wondered about connective tissue disease as I suffer tendinitis and plantar fasciitis as well? I’d like a full health MOT but instead each symptom gets treated separately.

I look forward to hearing if you find a cause and even better a cure. I have found a sciatic stretch that is personal to me, I have to get myself in a weird position till I feel a pain like someone sticking a knife in my foot, I feel that stretches it and possibly helps the cramps but not the twitching. I think I will be forever twitching if I’m honest.

Take care and stay safe

Kay x

[C-aches in reply to Krawlins]

Hello Kay, my goodness you are going through a lot! I think I was lucky(!) to have a high DSDNA which, along with my history led to a diagnosis of Lupus in early 2018. My diagnostic journey began with lower back pain some 6 months before. This developed rapidly over 2 weeks until I could barely walk, increasing numbness, loss of reflexes in my knees and feet, electric shock type pain and feeling so very ill, frankly I just wanted to die. I thought I was going mad. The neurologist now refers to this episode as a "transverse myelitis like illness" but won't commit as there was nothing to see on the MRI. Fortunately this has pretty much resolved without treatment over time, but the neuromyotonia and fasciculation's that developed later seem to be getting worse. I am now getting tapping and twitching in my arms, hands and even my trunk from time to time. I am not sure how this will work out, my neurologist doesn't seem particularly concerned or even interested, so I guess it won't kill me! I will try to keep you posted if anything helps, stay safe and well in these crazy times,

Liz x

[Krawlins in reply to C-aches]

Oh Liz that is something quite different to mine isn’t it as it’s more widespread.

What please is neuromyotonia? Is it the widespread spasms you have? I often feel other parts of my body will spasm and lock, especially when I could still do Pilates, even a yawn has caused me issues before, something went out of line and hurt but I managed to push it back without having to seek medical assistance. My ankles and hips are loose so that I’m quite flexible but also my joints very quickly get stiff, ankles in particular.

I keep saying I’ll see a private rheumatologist but haven’t got round to it yet.

I’m so sorry your neurologist doesn’t seem concerned, one would hope in some respects that’s a good thing but he/she should put your mind at ease and explain what they think is happening and why and what if anything might be able to improve the symptoms you’re suffering, why are they so dismissive, I find it a great shame.

The words benign fasiculations were mentioned in regard to my twitching and buzzing, my feet do sometimes really vibrate (similar to the peripheral neuropathy I suffered during chemo). I do have absence of reflexes like yourself and areas of numbness on left foot though.

Best Wishes Liz

Kay x

[C-aches in reply to Krawlins]

Hi Kay, I think neuromyotonia is just a term to describe the muscle twitching that we can see under the skin. Neuro means nerve, myo refers to the muscles and tonia refers to the spasms or twitching., so just a descriptive term really. There seem to be various degrees of seriousness attached to this condition, and the more serious forms have been awarded names (Isaacs syndrome for example) according to who identified them. They are however extremely rare, and so not of any great interest to most specialists although there is an association with Lupus, but it is uncommon. Can I ask where you live in the country? I saw an excellent Rheumatologist privately to get my initial diagnosis as the neurologist I was seeing felt unable to diagnose, even with the positive blood tests and history. I was referred to he Rheumatology team in the same hospital and told that the wait would be around 7 months for an initial consultation. I was still very unwell at this time and simply could not wait this long to start treatment that might help, so I found a regional centre of excellence for Lupus and got a referral via my GP. I was seen within a week, diagnosed and started on treatment pretty much straight away. It cost £150.00 and is the best money I have ever spent! Please go to the Lupus UK website, it is full of really useful information including regional centres of excellence for Lupus. Forgive the long ramble! Good luck on your continuing journey, and keep in touch xx

[Krawlins in reply to C-aches]

Thanks for explaining Liz, I think I’d be happy to pay £150 just for someone to listen to my list of symptoms and tell me if it means anything. Pain management dismissed me from clinic after couple of years saying I had CRPS.

You already had positive blood test, do you know if I’d have to pay extra if they suggest blood tests at the initial appointment and then do you pay another £150 to go back for results?

I live in Essex, around 4 miles from Southend on Sea. There is a private hospital I know of there called The Wellesley I believe. Once diagnosed can you then get medication on the NHS if necessary or do you stay private now?

Thanks for your help xx

[C-aches in reply to Krawlins]

I was seen twice by the private rheumatologist (Dr K.) while waiting for the original referral to happen, which it did eventually. Dr K. then wrote to the NHS Rheumatologist who now has responsibility for my care, but the door is always open to see Dr K again should I feel the need. I am in fact toying with the idea since the onset of this neuromyotonia as she has a special interest in Lupus, which not all rheumatologists do. I am not sure about the testing, but my GP was happy to supply all the test results that I had had done on the NHS to take to the initial appointment, but I would have had to pay for any more procedures I think. The follow up appointment cost £100 for a half hour session. The first appointment took an hour, unhurried and very thorough. With any private consultation, they have to tell you the cost before you go forward so you will know what to expect. Another thought occurs to me, most Rheumatologists will treat according to the symptoms rather than actual test results, although history is important too. I really recommend finding a centre of excellence for a Lupus consultant if you think this is what you might have, it is such a weird condition! Let me know how you get on xx

[Krawlins in reply to C-aches]

Thank you Liz for all the helpful information. I shall make some enquiries about my list of symptoms. I think there’s something, not necessarily lupus but maybe Sjögrens or connective tissue issues. Might find out one day.

Let us know if you do see Dr K again, sounds like you need someone who cares and understands with good experience and knowledge. It’s just nice to know they listen and that you get an hour’s appt first off, makes a change

K x