Neurology follow up appointment

[skylark15]

Hi, community.

I will be seeing my neurologist for the second time tomorrow afternoon. My question is: What should I ask him? He is likely to say that I should have muscle and/or nerve biopsy to investigate persistent muscle weakness. Has anyone with a similar problem been offered any different investigation/s by their neurologist, that gave a reason for the weakness and wasting?

I have lupus, Raynaud's, erythromelalgia and ostearthritis but until recently was fit, strong and energetic. For the last 18 months or so, I have been getting progressively weaker, with muscle wasting particularly in my lower legs. I have had NHS physio and hydrotherapy; I've been doing floor-based exercises fairly assiduously since January 2016 (when I had my second hip replacement but the generalised weakness had started prior to that operation); I tried Pilates but my balance is so poor that I got disheartened in the classes. I've been going to the gym at least 3 times/week since early November '16. but my strength hasn't increased and neither has my endurance. I am still on the lowest level of resistance on the cardio equipment and my legs feel like jelly after a few minutes.

MRI of thigh muscles didn't show myositis. I had neurophysiology testing (nerve conduction studies and electromyography) in November which showed peripheral neuropathy consistent with my age (!65), lupus and Raynaud's.

The rheumatologist requested a battery of investigations (inc DEXA, coco) and blood tests. Bloods mostly ok apart from a persistently raised CK (actually down from 992 to 364 but still way above normal) and Troponin-T raised at 49ng/L. Because of trailing to and from the various hospital departments for these rather scatter-gun investigations over the next few months, I shan't see her again until July. Thanks,

tess

[Renu]

Hi,

Sorry to hear you are struggling so much. I have polymyositis and SLE. My MRI did not show it either years ago, so the rheumatologist requested a muscle biopsy which did show and confirm polymyositis. I also had evidence of nerve damage in thighs. Good luck to you with your investigations. My CK was also very elevated. I swim to try and maintain muscle tone. My muscle strength has improved because of this but my stamina is not there to walk or stand for any given period.

Renu

[skylark15 in reply to Renu]

Thanks so much, Renu. Your kind words and the history of your experience gives me the evidence I will need this afternoon when I see the neuro.

A couple of questions: Is your weakness generalised or just affecting your legs? . And what meds have you been prescribed and which, if any, have helped? I've been taking Hydroxychloroqine since my lupus diagnosis in 2011. Stopping that, off my own bat, for 3 months to see if maybe that was the cause of the new weakness made no difference. I've restarted it because my cutaneous lupus flared unbearably. Thanks once more.

tess

[EOLHPC]

Hello tess 👋👋👋👋

First off: good luck today! 👍👍👍👍

Although my personal experience of neurology is limited to investigations into my spondylosis & into my peripheral neuropathy + foot drop (at the time my SLE was unrecognised so neurology was testing me for MS) I did attend a seminar set up by my univ hospital Rheumatology dept on SLE & neurology....my impression is that severe sudden onset persistent signs & symptoms like yours are exactly the sort of thing that warrant the type of Multidiscipline Team approach the NHS is taking in your case....and the prime players should be neurology & Rheumatology. So you've got all those boxes ticked 👌👌👌👌

My instinct is that these investigations are going to take some time. Am sure your presentations at your first Neuro appt & in Rheumatology clinic were very thorough. Now your consultants are getting their heads around your complexity. I wonder if neurology might suggest waiting for the results of Rheumatology's tests before deciding on further investigations. My feeling is that this would basically be a delaying tactic...

am sure you'll get better informed replies from others with more experience, but I've just flicked through our Big Fat Friend: Johns Hopkins' The Lupus Encyclopedia...& am wondering whether if I were in your boots I'd want to be looked at more closely re demyelinating syndrome (aka lupoid sclerosis...a type of CNS demyelination) due to SLE, e.g. lumbar puncture + MRI of brain...& I imagine Rheumatology has ordered your immunoglobulin G, oligoclonal bands & myelin basic protein checked?

Basically, my chronic Neuro-cerebral signs & symptoms are similar to yours...I'm not pushing for further investigations because my daily oral combined therapy treatment plan is damping my N-C s&s down (hydroxy + amitriptyline + myco + pred) AND my rheumatologist thinks I'm fairly stable now. But I'm keeping my eyes & ears wide open on this subject. And am v much feeling for you as you endure living with these s&s while ndergoing these arduous investigations

Hope you'll let us know how things go today

🍀😘🍀😘🍀😘 coco

[skylark15 in reply to EOLHPC]

Thanks, coco. As usual, from you, a full, encouraging and helpful reply🎈

Yes, I expect the neuro will say wait but in the light of Renu's experience and my sister's advice (consultant radiologist who says the muscles at least need to be examined microscopically), I will ask for biopsies.

I will read up on lupoid sclerosis and no, I haven't had those blood tests nor has the rheumatologist given any indication that she has thought any wider than "cutaneous lupus with mysterious muscle weakness"😏

I will keep you posted. Thanks again.

tess

[EOLHPC in reply to skylark15]

I like the way you're thinking!

Am so glad renu saw your post & replied 🌟🌟🌟🌟

❤🍀

[skylark15 in reply to EOLHPC]

Dear coco! And so am I, re Renu's reply.

Has Big Boy been back in your garden today? We had roe deer in the woods & fields around our isolated house in Devon, before we scuttled back to the city 18 months ago, as I grew less & less able to manage the place. I loved to see them and they left my husband's veg garden alone as well.

Good luck on Monday. I'll be thinking of you, undergoing endoscopies with your socks on and probably a tee shirt under your gown! 🍀🍀🍀

tess

ps, this is written on my mobile, which has emojis, Yay!

[EOLHPC in reply to skylark15]

😆 Renu & I must've been tapping in our messages simultaneously, but hers is more concise so got in before mine...i dreaded that the right experienced person might not turn up with a reply before your appt: but luck was with you 👌...this wonderful forum is like that!

OH YES: they are so lovely....I've only learned about roe deer since we moved here neatly 30 years ago: THE most dainty, shy and retiring of all Brit breeds (I think so anyway).

Thanks v much: am now onto endoscopy clinic's strict diet exclusions for 3 days...yep: the stocks are staying ON 👣

Am guessing you're on the way to clinic 💃🍀😘

[Renu]

Hi,

My weakness is most prominently in my thighs and hips but I also have in shoulders and upper arms. I was on steroids, immuno suppression (azathioprine) and hydroxy but am now stable and in remission so I am just on hydrox and asprin for now. So there is hope!!! My mobility is very limited but I swim to keep muscle tone and to prevent wasting. I do the best I can to save what little mobility I have. Hope that helps my lovely. Good luck. Let us know how you get on.

Renu xx

[marghay13]

Sorry I can't add anything useful to this skylark15 but am interested. I remember my daughter, who had CF, underactive thyroid and we always suspected some other autoimmune activity going on, having muscle weakness.

She could be walking about and her legs would suddenly give way. Walking downstairs, in her bedroom etc. At one point was dx with myositis but also had very high ck level. Sadly we lost her but never really got a satisfactory answer to the multifaceted disease that seemed to be going on. SLE, which I have, was ruled out. I wish you luck in tracking down an answer but mostly in finding a way of dealing with this.

[skylark15 in reply to marghay13]

Dear marghay,

Thank you for your message and I'm so sorry to hear about your daughter.

Finally, in October last year, after about 3 years of increasing muscle weakness and wasting, and various investigations, including muscle biopsy, I was seen by a Neurologist who specialises in neuromuscular problems. He told me that I have a form of Muscular Dystrophy, which didn't come as a huge surprise, as there had to be a reason for the symptoms. In fact, it was a relief to be diagnosed, as it has meant that I am now under his care and enrolled in the South West Neuromuscular Network, which is immensely helpful. I have seen a Care Advisor, who is a mine of useful information about living with and adapting to life with a muscular disorder.

In fact, I have just come back from one of the "Muscle Cafe" meetings that are held every 3 months or so, where people with many different neuromuscular disorders meet for coffee and a chance to chat and share experiences and tips. Today there was a talk by the clinical psychologist associated with the Network. He understands how being given a diagnosis of any of these conditions can affect one's mental state and that some people struggle against accepting that their lives are going to be permanently altered. I'm still not sure that I've quite come to terms with it myself. I'm particularly frustrated that my husband and I can't take the walking holidays that we've done every year for the last 15 years or so.

All best wishes,

Tess