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LUPUS UK
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What is your experience with Mysiotis?

If any of you could shed some light on this I would be most grateful xxx

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Hello Lisalou19

You may have read my story already, but here it is in summary.

Late summer 2017 - elevated CK result following neurology assessment for fatigue. Neurologist advised no abnormalities otherwise but CK should be repeated

Dec 2018 - I noticed increasing leg weakness, especially when climbing stairs. Saw GP - he said no problems were apparent

Jan 2018 - weakness increasing, together with altered sensation in thighs. Asked GP to arrange repeat CK

March 2018 - CK result well in excess of normal range. S/B Rheumy, who ordered CT scan, muscle biopsy, EMG and further CK

April - CT scan shows inflammation, CK highly elevated. Later results from muscle biopsy shows polymyositis.

May - dithering about appropriate treatment

June - start on higher doses of methyl pred and soon afterwards, azathioprine

July - symptoms peak. Difficult to get upstairs, some difficulties swallowing, thighs and knees very weak, with altered sensation

August - emergency admissions to hospital x2 due to intolerance of AZA. Continue with methyl pred

October - CK levels falling rapidly. Swallowing difficulties eased. Have some strengthening exercises at physio; start tapering steroids

December - normal sensation almost returned. Strength improved. CK levels normal.

That's about it. As you probably know, there are several types of myositis, and myositis groups here on HU and on FB

X

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Thank you for your reply. I wrote to a rheumatologist last year and said I feel like I have MS, only I know I don't as the reoccurring skin rashes don't fit the bill. I have had trouble using my hands for some time and as for climbing the stairs I thought I was just extremely tired as I do not sleep very well at times.

The palms of my hands are like the texture of bark off a tree.

And the swallowing , well I wish someone would just shoot me. It is horrendous and something I really can not live with.

Hearing that your symptoms have improved, this gives me some reassurance. I have seen this written down by D Cruz and at my last appointment I went down to dermatologist after seeing him and I could hear them discussing this in depth. What I have been reading is quite frankly sending me into over drive. I have tried calling the charity for this disease but they have not rung me back. I noticed on here there isn't too much activity on their page. I guess I need to hear it first hand what this is all about. x. Ps I have needed help with washing my hair for some time as keeping my arms elevated just sends them into a spasm.

xx

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Att he peak of my symptoms, the skin on my hands was splitting and there was a hint of the so-called "mechanic's hands". But in general, I had no skin symptoms and this has resolved now. I have extreme chronic fatigue and a diagnosis of fibromyalgia, but the thigh miscle weakness was definitely different to "fatigue". Hard to explain how, but I "just knew" it was a different kind of thing. As you say, the swallowing thing was perhaps the most frightening, but has completely gone now (touch wood!). But just to emphasise - there are different types of myositis and I wouldn't dare suggest that you have the same as me, or even that you have myositis at all. Has Dr Cruz given you a clear idea what he thinks is going on for you?

You're right about the HU page, it does seem quiet. The FB group "Myositis Forum UK" is much more active, so might be worth joining? x

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I have a postive test for the anti body. I have another appointment in 3 weeks with a neurologist at Guys. I have extreme skin rash issues and the skin on my hands breaks very easily. No matter how much I moisturise them it makes no difference. This is a very new area for me. If I think about my personal problems with bladder control, swallowing and legs that feel dead but I can still use them, a lot fits the bill.x

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Sure. I had an issue with my pelvic floor muscles - again, it cleared up after a few months of higher dose steroids. But of course, it's really hard to know how far any one person's experience will be the same. We all seem to have our our individual flavour of autoimmunity. Hope things work out well for you x

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It certainly is a different experience for us all. Shame we can't just buy a new immune system on line :-( x

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Hi Lisa,

I am so sorry for your situation.

In many aspects I can relate to you such as to leg weakness, bladder issues and the question if I might have MS or a MS-mimicker.

You write that you tested postive test for a myositis antibody. May I ask which one(s)? I was tested positive voor anticardiolipin (suggestive for APS - a MS mimicker) and for anti-KU which is myosotis indicator. My CK is always low-normal.

Hugs,

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I have a positive PM100

Not sure if that is the medical term or a term I am meant to understand.

I honestly thought I had MS , but it has only been the last 12 months my health has declined rapidly. To me what ever I have started off as something else that has escalated due to not receiving the right medication

But I’m no expert

I’ve got another anti body but can’t remember what that one is without getting up to find the letter

X

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Thank you for your reply. What you describe about the decline of your health is happening to me as well.

Here I found a list about all the possible myositis markers:

eurofins-biomnis.com/en/ser...

Good luck

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Crikey that list is endless!!!!! To be honest I’d never heard of Mysiotis before. I’ve been passed from pillar to post until I eventually asked on here about a private specialist. I was under a good rheumatologist but it was taking far too long for any answer and I was experiencing symptoms that I just couldn’t live with. I was at the hospital last Friday, since then I have an appointment booked now with neurologist, lung clinic and dermatologist. Finally I am getting somewhere but it has been a battle x

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Lisalou19,

Never seen this list before it looks endless, thanks to Patricia2015.

I have polymyositis with a Scleroderma overlap, my health declined so fast. In July 2014 I went to see a private rheumatologist cos I wasn’t feeling well and decided the 3 month NHS wait was far too long. He told me he’d see me on the NHS for lots of tests, by August I was admitted to hospital cos I was unable to walk and my muscles were so week. I was in hospital for 8 weeks and saw my consultant nearly everyday with his team. I was put on cyclophosphamide and prednisolone for a long time but then moved onto mycophenolate now and I can walk again, I’m unable to work but I’m better than I was even though there are lots of other issues associated with the Scleroderma. I have monthly blood tests and 6 monthly reviews with yearly cardiology, lung function and gastric checks.

Speed is of the essence with this disease, the problem is not many people know about these rare diseases, so good luck in your quest.

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Oh my this sounds horrendous. I’ve been having these pains in my hips and thighs for ages. I wonder if this is related.

I have appointments booked with a number of specialists within the next 6 weeks. I’m worried my legs and throat will stop working 😪x

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Lisalou19,

It was horrendous at the time. I had joint pain everywhere, hips, knees, could lift my arms, couldn’t was my hair.

I’m no expert but it progressed very fast for me. The best thing I did was go private for my first appt cos NHS was so long and I managed to see an expert, it took ages to get a diagnosis.strangely enough in 1974 I had Rheumatoid Arthritis for about 10 years and received then 40 years later I got very ill, I don’t know if there is a connection. Try and stay positive, stress is not good.

You could try and ring the secretary to see if you can speed up your appointment.

Keep a diary of events and problems it really helps cos you never remember everything when you are in a consulting room.

Hope you feel better soon.

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How did the doctors explain the myositis to you? Did they say you have myositis as a part of another autoimmune disease or mention polymyositis or dermatomyositis? What medication did the rheumatologist start you on? If you can’t wash your hair, that is pretty serious. I am hoping that after they get a handle on your illness, they will be able to get you functioning better. Poor you, so long with no relief. KH

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I’ve no idea 😰. Didn’t explain much to be fair but I reckoned they are waiting on these others tests I need doing .

See what confuses me, my symptoms started almost 15 years ago, only the past 5 have been hell. I reckon I have had another undected disease that may have progressed to this x

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That makes sense that the doctors would not be more specific if your lab results are not back yet. You have really had a long, difficult course. Do mention your confusion to your doctor at the follow-up appointment. He may be able to speculate as to what has happened. Hang in there! K

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Hi there I hope you don’t mind me messaging but I’ve been told I have fibromyalgia and m.e but my symptoms to swallowing and the muscle weakness in legs are so the same and I seem to be getting worse and no better. I improved on a course of short steroids in tablet form for 3 weeks but I can not have them long term could someone please inform me of more on this condition thanks for your time happy health for us all in this new year Thankyou x

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I have been on high dose steroids for some time and felt really well. Now I have been put on a immune suppression tablet so I have been advised to stop taking the steroids. Its been a week with no steroids and I feel bloody awful. The swallowing has got horrendous, but I am trying to stay calm and think positive, this can be difficult when you feel like you are suffocating. I don't really know much about this, but I know HealthUnlocked is a good place to hear others experiences. x

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Hello Twinkle0411

This NHS page is quite a good, simple introduction nhs.uk/conditions/myositis/

Have you discussed your concerns with your rheumy? x

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I’ve not really had a chance to discuss anything. Since my appointment I have just been bombarded with new appointments with all sorts of specialists. Of course this is causing me extreme anxiety

X

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Hello Lisalou119. I’m sorry to hear that you are dealing with these issues. I do have myositis but my neurologist has not lumped it into one of the usual categories as mine is somewhat unique. Thankfully it’s more mild than many experience but it definitely isn’t easy to live with. I have several overlap autoimmune diseases in addition - small fiber neuropathy, erythromelalgia, something similar to Raynauds and now he thinks myasthenia gravis.

I’m as of late developing swallowing issues as well. Plus I’m getting these very painful spasms in my esophagus. The problem is though that many of the medicines I can’t take due to the possible myasthenia gravis.

I do get a lot of pain through the pelvic, upper leg and upper arm areas. The weakness is truly different from being tired but I have extreme fatigue. I’m in bed every afternoon. Can’t function otherwise. That may be the MG though. Not sure.

My blood levels have always been normal other than total complement and liver enzymes. However, the EMG showed the myositis.

I’ve been on prednisone now for almost three years but my neurologist finally introduced azathioprine last summer and I’m starting to taper down on the prednisone. It’s a real battle because my body is so used to it but I’m very happy to hopefully get rid of some of these side effects.

Wishing you the best in your treatment!

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What is EMG?

You have covered a lot thank you for sharing . I’m really hoping this is not an extreme version 😰

I’ve not had steroids since last Tuesday and I’m literally covered in this awful rash, pain in my outer thighs are really bad and my legs, well I have noticed this for a while They feel like dragging lead up the stairs and it’s quite painful. I’m sure I now need to get worse before I get better having started new medication x

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EMG is electromyography. You can google it but it’s a very unpleasant test where they insert needles in your muscles in various areas to measure the electrical activity in the muscles.

Why aren’t you on steroids? They normally leave a person on those until the new medication can safely take over. You don’t want more damage.

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I’ve no idea why I can’t take both. But already one week without steroids and I feel like I’m breaking down slowly as each day passes . My swallowing has got extremely worse without the steroids too. I feel like I’m getting more drained with the effort needed to swallow!!

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You’d better get a call in to your doctor right away. You don’t want that to keep progressing. It can very quickly.

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Sounds like good advice!

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Thank you for your advice . I have noticed all sorts of going’s on and last night the swallowing got so bad. I found a web page regarding medication for Mysiotis and I did say you can take them both together , so I did x

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Lisalou19,

With my Myositis overlap condition one of the things I have is swallowing (Dysphagia), so my diet is quite limited. Try and raise your head up when sleeping, this helps me.

My advice is to see your GP asap, there’s obviously a lot going on.

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Thank you

Just waiting for guys hospital to call me back. The swallowing is causing such anxiety, I can’t tell what’s worse, swallowing or anxiety.

I have read that there are lots of operations available to help with swallowing. Has anyone suggested anything to you? X

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Got an appointment through today for the EMG test 🤢. I feel really nervous. What shoujd I expect? Sorry to trouble you x

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Just to reassure. The emg is pretty painless. I had the sfemg which is for MG and that involves needles into the eye muscles but even that didn’t hurt. Don’t worry. Good luck with the results xx

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To be honest, a needle EMG can be painful in certain muscles. If you take a painkiller beforehand and rest the day of the EMG the next day it will only feel as muscle ache. So it is painful but nothing we AI people cannot handle.

Good luck. I hope it will bring up the confirmation of your symptoms!

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Have you had an EMG? Did it show any results?

To be honest I’m at a point, if they had to remove any part of me in return for a normal life I would happily agree.

So sick of having a 5 year old son that I don’t have energy for 😔x

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Yes I had a needle EMG about three years ago when I experienced muscle weakness at first but had no visible signs yet (no my feet and lower legs are atrophied as are my hands and wrists). Results came back normal.

I can totally relate to the lack of energy :-( and also to removal of some body part. The issue with the latter is that phantom pain is agonizing pain so I am not sure it would help in out situation...

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See my legs ache when I walk and I’ve had episodes of not being able to use my hands. Swallowing has got worse and controlling my bladder, but I don’t know if this is muscle or nerve related. I have my appointment on 30th January. I’m hoping I don’t have to wait months for result. Fingers crossed it’s normal 😐x

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Sounds awful what you are going through☹ EMG tests both nerves as muscles and their connection. I hope they don't find a serious conditionbut I do hope you will get answers. When the EMG gives truly divergent or very normal results you might hear it directly if a neurologist is there to interpret it. Otherwise it could take few weeks.

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I’m thinking it can’t be anything too sinister as what ever it is comes and goes and when symptoms are at its peak I have the skin rashes to follow. Here’s me keeping to positive thinking 😬x

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Please keep us posted as to the results. The first EMG I had wasn’t very painful and was very quick. It had negative results. Then 6 months later i found a new neurologist who wanted to redo it. It was much longer and painful at times (not the entire time - depended on where the needle was). However, it was so worth it because it started me on a real diagnosis. I think the first doctor wasn’t as good at the procedure.

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Thank you . I’m pretty convinced it can not be anything horrendous as symptoms peak without steroids. On steroids I feel good. I’m happy I’m finally getting the investigations I rightfully deserve. Will keep you posted xx

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Lisalou19,

No suggestions of operations, surgery is not an option for me for anything as I have such a compromised immune system.

Glad to hear you’re in touch with Guys.😀

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