Looking for advice for Rheumatoid appointment

[UK PMR Diagnosi]

Hi All,

Have been reading the forum for sometime and wondered if I could get some advice.

First a bit of background, I am a 49 year old British man who woke up suddenly with extremely bad shoulder pain in both shoulders in early Nov 23. This progressed to be daily excruciating shoulder pain and stiffness that only eased after crawling upstairs for a hot shower.

My doctor took bloods which showed elevated CRP and ESR and low vit D. He referred me to a Rheumatologist.

Finger pain was now evident and hip stiffness bilaterally meaning I had to stop driving at regular intervals to stretch and move my legs.

My Rheumatologist diagnosed PMR, polymyalgia rheumatica and prescribed a long course of prednisolone

My symptoms improved greatly but since then I have begun with different additional symptoms.....

1. LOTS of fasciculations, all day everyday, mainly in the calves and wrist and progressively worse.

2. I have developed 'flabby' upper arms....in the UK we call these 'bingo wings' and I have never had these before.

3. I feel my heels drag on occasion, like I am missing a step

4. I have a burning sensation in my tongue.

5. Cramp behind knee.

My doctor has run additional bloods showing no thyroid issues, pottasium at normal levels and vit d at normal levels

The simplest thing to blame for all this is clearly the steroids......

I do hope that this is the case but as I have my next Rheumatology appointment on Wednesday I wonder if members think I should push for an EMG or a neurology appt or whether it is better to just stick with my Rheumatologist for now?

I do not have any loss of strength in my arms or legs but I do have excess fat/flab as I have mentioned.

I have read the sticky about how ALS generally manifests and we're it not for my fasciculations and other bits and pieces I wouldn't be here.

That said, I have this appointment on Wednesday and I just wonder I members think it would be prudent to ask for a referral to a Neurologist.

Many thanks in advance for any advice you have.

Paul

 

[lgelb]

Not to dispute the dx, but a second opinion is advised on a PMR dx when someone is not >50. The low Vitamin D could be a factor, depending on how low and how long.

It's true that the steroids could be contributing to the current issues, but that's moot if you don't have PMR. So what I'd ask for Wed. is a second opinion referral to tick that box.

 

[UK PMR Diagnosi]

Thanks for that reply.

So a referral to neurology you mean?

 

[Nikki J]

No a second opinion on the pmr dx

 

[UK PMR Diagnosi]

I have seen 2 Rheumatologists and they both feel PMR is the cause.

The issue is that since those diagnosis the other symtoms have started.

Why do you not think a neurology appointment would be a good idea? Just out of interest?

 

[Nikki J]

See what happens in your appointment tomorrow. Tell them your symptoms and see if they think it is out of their scope. Fwiw I don’t think you are describing ALS

 

[UK PMR Diagnosi]

Much appreciated. Thanks. I'll keep you posted and grateful for the advice.

Paul

 

[UK PMR Diagnosi]

Hi Nikki,

I attended my Rheumatology appointment and my Rheumatologist took some bloods and booked me in for a EMG based on my video...the waiting list in the UK in my area is currently 3 months but I'm hoping to be seen privately in a shorter time frame.

Currently extremely stressed and can't really get Wednesday out of my mind. My consultant asked about swallowing and cramps of which I have a constant cramp behind my left knee.

I do not believe I have any weakness. I am more clumsy than usual in terms of grabbing things and them dropping but that doesn't feel like weakness.....more kind of jitteriness which again, I am hoping is a Prednisolone sode effect.

The main issue remains....twitching or fasciculations, they are almost constant in my calves and I also have a burning tongue. I often have other twitches in other areas but these are sporadic, again, I believe all this started a week after my steroids treatment for PMR.

Dr C.....my Rheumatologist.....wouldn't be drawn and wasn't prepared to speculate on what was causing the twitches but he said if the EMG was clear he'd likely call it a steroid induced issue.

I mean, as I've said, I have read the read before you post and I do see that fasciculations without weakness would not be seen as a reason to think of ALS necessarily but I have also seen on sites that twitches can be the first symptom.....it really confuses me.

This has suddenly become very stressful when I thought I was making good progress with my initial diagnosis.

I am very grateful for your responses to date, I still hold on to the fact that I'm my initial illness pain and bilateral pain and stiffness was a huge issue for me. That does give me some hope there.

A quick final question, would steroids mask any symptoms of ALS? Like I have had such a good response to these drugs but my 1st Rheumatologist said that 30mg of Pred would basically knock out most things.....which didn't seem ideal from a diagnostic point of view.


Many thanks again and sorry for the length of this update!

Paul

 

[Nikki J]

Prednisone would not mask ALS. If the feeling behind you knee is constant it doesn’t sound like a true cramp. Burning tongue is not an ALS symptom. Any chance you have thrush which is common with steroids

 

[UK PMR Diagnosi]

Hi

I never considered thrush. I am looking into it......I just can't understand these twitches.....absolutely constant now but not when I'm sleeping it seems and not for the first hour or so after waking up and moving between both calves.

Painless but driving me mad. Went back through my Prednisolone diary and pre med I don't think they were there. But a week after starting they must've been because I mentioned them to Dr C.

They were nothing like they are now at that point and so we both just kind of left it with a 'see how it goes'. Now though, it's the biggest issue I have.

Like I say, I'm heartened that I have no weakness but the concern is still there and I'm beginning to worry that this is looking more serious than my initial PMR diagnosis.....that is....unless being on 12-15mg of Pred over the past 4 months has actually caused this.

Thanks as always for your response. It is helping me to think this couldn't be ALS but I suppose only this EMG will give me the info I need.

It's the waiting whilst sitting here twitching that is driving me mad


Paul

 

[UK PMR Diagnosi]

Hi,

Was looking for a bit of follow up advice re. am EMG. As I mentioned above I have been referred by my Rheumatologist for an EMG but the wait is 3 months.

My private health care provider do look as though they will fund the test but have no tests any earlier at their hospital in Kent so they are giving me an allowance of £2500 to find something Private.

I have managed to find an appointment for next Thursday 4th April at Liverpool Spire Hospital which is close to my mums house.

The problem is that i am due to go on holiday on the 5th of April and am torn as to whether to get the test done before i go or wait until i come back.

So I have a few questions if anyone could help......with an EMG, how invasive is it? Would I feel ill afterwards or would I be kind of OK to get on with things?

Also do you get your results instantly? I wonder if I would even go away if the results weren't great....and so I wonder if i should avoid the test before and try to enjoy my break or get the test done and hope for the best......obviously if the results aren't instantly available then I suppose I may as well just get them done and get the results on my return.

Also, what would an EMG show......would it just be Good v Bad? Positive v Negative and then I see a Neurologist to work out exactly what is going on?

Is it possible to see from an EMG a whole plethora of conditions......so like if mine was bad, would i get a diagnosis of something there and then (I am kind of thinking outside of MND) such as Parkinsons or some other nerve disorder or is this really just to rule MND out?

Sorry for so many questions, it's just I've been so worried about my fasciculations that I thought getting an appointment for an EMG would help and yet now potentially seeing it on the horizon it makes me probably a bit more worried

Anyway, sorry to bother you all, any thoughts gratefully received.

Paul

 

[Nikki J]

You should absolutely be ok to travel. I have had many for research and often hopped a plane within 24 hours. You might be a tad sore or more twitchy is all

Whether you get results instantly is purely protocol. They know what they saw but 1 sometimes they can’t say even if it is fine and 2 emgs can show many many things. Some are unequivocal but others need interpretation ( clinical correlation)

 

[UK PMR Diagnosi]

Thank you Nikki,

A bit torn really.....I think I'll ask the hospital if I will get instant feedback. I think specialist is doing the emg himself so possibly I would? Who knows.

I just don't see, having read so many posts here how I could possibly have this condition without any muscle weakness but nothing like this has ever happened to me and the fasciculations are really off the charts now.

Went over things with my mum who was with me when I couldn't get out of bed due to shoulder pain and stiffness back in Nov 23 and she said I NEVER mentioned fasciculations at that point.....thus.....I'm.hoping still that its the steroids.

Out of interest and just in case you know, what other conditions can an emg highlight or is the list too large?

Thanks again

Paul

 

[Nikki J]

If the doctor is yours and has already seen you the odds of getting results are higher.

So many things can show on the emg and the accompanying nerve conduction study- most of them are fairly benign and sometimes it can be a small niggle from an old injury or as we often see here benign fasciculation syndrome

 

[UK PMR Diagnosi]

Hi

So I went for my EMG on Thursday and await the results......my fasciculations were virtually nil on the day which I just can't believe as they are back now.....

Would that affect the EMG result? In other words......would something not be spotted if the twitching was low grade or not there at all?

In addition, only my calves were tested, there were no other spots looked at.....again, would this make any result not valid?

Many thanks and sorry for all the questions