Rats, keep forgetting, was that 2 steps forward and six back or 1 forward and 7 back?

[Mike1964]

Well, what a funny old week. Thank you again to everybody for your words of comfort, support and encouragement over the weekend regarding my issues with exhaustion. I bit the bullet Tuesday and visited my GP, she was actually very supportive and has signed me off for a month. I must say the relief of not having to drag myself into work each day is immense. She then dropped a bit of a bombshell! and said "Michael I'm really worried about you" When the horror of PMR (Or not) hit in Feb, I went to see the Dr 3 weeks running as I was in so much pain, neck, shoulders, lower back, hips and thighs. I felt like I was ageing 10 years each week and knew something seriously unpleasant was going on. I saw a different Dr the 2nd time, I remembered being very impressed as he asked lots of questions, he also ordered an impressively large amount of blood tests, but same old story "Phone back in 2 days time for the result" you phone back to be told "Everything's fine" so you're left feeling like an idiot not sure what to do next. I saw my own GP the 3rd time and even she commented on all the tests he had ordered, it was at this stage she suggested I may have Fibro, I went home and did some research and discovered PMR and thought surely my symptoms match that, I went back again and asked if we could try Pred which she agreed to and 3 days later pain is 90% gone. Anyway, she had revisited the tests done in Feb during my visit Tuesday, they had indeed all come back fine apart from one. She then said I think you may have Myasthenia Gravis, apparently I have a lot of something floating around my blood stream. I must say I'm rather miffed that this has only now been looked at! so now I'm back to a (Hopefully) urgent referral to a Rheumy. I had made contact with Chertsey and was going to book a private consultation with Dr Hughes but now feel I'm back to square one

So, does anybody have any words of wisdom about a possible dual diagnosis? the MG would appear to have it's own (Rather nasty!) set of issues, but they seem quite different to PMR.

[PMRpro Ambassador]

You don't remember what the lot of something was? It wasn't creatine kinase was it?

It might still be worth seeing Dr Hughes - and yes, it is possible to have another autoimmune disorder even if it is MG.

[Mike1964 in reply to PMRpro]

To be honest I don't, she was asking lots of questions about droopy eyelids (Not yet!) and I really struggled to take anything else in

[Celtic PMRGCAuk volunteer]

Crikey, Mike - talk about a curved ball! I would have thought PMR was still top of the list especially as you had such a good initial response to your steroid starting dose......until you then admitted you went and overdid it recently! However, if it is MG, then, of course, it's quite possible that the steroids are also the go-to drug for that as well. If it were me, I would remake that appointment with Dr Rod Hughes at Chertsey....and I speak from personal experience there. I do hope you get a definitive diagnosis one way or the other very soon, as it's no fun being in no man's land and suffering.

[Mike1964 in reply to Celtic]

Hi Celtic. Sorry for the late reply, I thought I replied yesterday but obviously forgot to hit the button! Yes I'm now leaning towards a trip to Chertsey, a good opportunity as i'm off for a bit. Kind regards, Mike

[Celtic PMRGCAuk volunteer in reply to Mike1964]

Being “off for a bit” is probably just what you need at the moment, Mike, so that you can rest - it might just help to ease your symptoms. Meanwhile, have you tried posting on the HU MG site - those with experience of MG might be able to advise you as to whether your symptoms sound MG-ish. Dr Rod Hughes is still the best port of call though in my view. I do hope you will manage to enjoy your time off in spite of the worry and pain.

[Mike1964 in reply to Celtic]

sadly not, I didn't actually have the intelligence to check to see if there was one. You've got to laugh haven't you Thank you for this.

[Celtic PMRGCAuk volunteer in reply to Mike1964]

Well, you made me chuckle!

[SheffieldJane]

Oh Mike! You must be reeling with far more questions than answers at the moment. It does seem that good old Pred is used for this Autoimmune Disease too sometimes. I just wanted to let you know that I’m thinking of you and wishing you well. I expect that there is a forum for MG too. It would seem to be exceedingly bad luck to have both PMR and MG. what are the symptoms that stand out for you as being PMR rather than the Myasthenia Gravis?

[Mike1964 in reply to SheffieldJane]

Thank you Jane. I suppose originally all of my symptoms seemed to mirror PMR, if i did a checklist i could pretty much tick each box. Now I've had time to ponder I do wonder, going to A&E 3 weeks ago with eye issues, swollen tongue, jaw/teeth aching I was concerned these were symptoms of GCA (Boy was i gloriously ignorant of MG!) but these are indeed some of the common areas it effects. I also remember 1 time early this year when one side of my face froze, it was just paralyzed for a few seconds. It was rather scary and quite bizarre, I remember thinking I can't be having a stroke as I felt fine i just couldn't feel/move my face. I also remember thinking I must mention that if it happens again! Do i actually sound like a mad hypochondriac who believes he has every rare disease in the book? now I'm starting to doubt my own sanity. I remember thinking towards the end of last year what a lucky man I was, it had been such a good year, I had a wife I love, a job I enjoyed, children I adored, I was healthy, even reasonably wealthy (At least by my modest standards!) Wow, this year isn't looking quite so chirpy so far.

[SheffieldJane in reply to Mike1964]

I know what you mean about feeling like a hypochondriac until you get a diagnosis and know what you’re dealing with. All your blessings are still present and correct just one more hurdle to be got over. That peculiar facial paralysis symptom was the pointer really. But who knows? I would have thought the same as you. Take care!

[Mike1964 in reply to SheffieldJane]

Thanks Jane. Feeling a bit less sorry for myself today

[SheffieldJane in reply to Mike1964]

You have every reason to feel sorry for yourself, as have we all from time to time. Give yourself a hug too. 👍

[Mike1964 in reply to SheffieldJane]

Sadly I can't get over that feeling that if somehow I've managed to win the "Alternative lottery" and have landed both, somewhere, some-when somebody will say to me "Boy that's really unlucky, do you realize thats odds of 10,0000000000 to 1, you know you had far more chance of scooping 10 mil on the lottery proper don't you?" I shall then be forced to go on a mad killing spree, just saying!

[SheffieldJane in reply to Mike1964]

PMRPro suggested that you still have a consultation with Dr Hughes. I think so too, his reputation precedes him and it would be good to have another opinion. Perhaps see if you can get in quickly. This uncertainty is doing you no good at all. You need someone wise to put this into perspective for you.

[Rose54]

Hi Mike

I am glad that you are taking time off work

Life is unfair sometimes but I hope you soon find out if you have MG or not ,Fingers crossed you don't .

I always ask for copies of blood test and read results myself

Recently told mine where ok but when checking B12 was above normal range and was marked see GP or Doctor due to add normal levels .

Let us know how thing go

Rose

[Mike1964 in reply to Rose54]

Thank you Rose. Such good sense, never trust em! I like your style

[Rugger in reply to Mike1964]

Mike, I'm sorry to read that you are in such a quandary and hope you soon get to know what's going on. Thank goodness you are off work at the moment.

You are not a hypochondriac, nor insane - your GP is "worried about you" and so are you!

What I really wanted to say is that I can access my blood results online, via the same system that allows me to order my repeat meds and make an appointment with my GP. Ask if your surgery offers this facility, as I find it useful to monitor the trends in my CRP and ESR and to spot if anything else is out of line. I don't have to understand the various tests, but I can see if something is too high or too low! (The reference ranges are usually given in brackets after my level.)

Take care and let us know how you get on.

[Mike1964 in reply to Rugger]

Hi Rugger. What an excellent piece of information. My surgery does have an on-line booking system so hopefully they offer the same thing. Thank you for the support.

[Mike1964 in reply to Mike1964]

Rat's, another good idea bits the dust We have mostly the same system, I can book appointments, order repeat meds, but I can't view blood results. But I can go into the surgery and ask, something I wouldn't have thought off so thank you.

[Hidden]

Hi Mike, So sorry to hear this disappointing news... I cant imagine how frustrated and at your wits end you must be! Hang in and yes, maybe see Dr Rod Hughes.... he was fabulous for me, although I am straightforward PMR & GCA.

It is funny how life just goes along and then one day you realise just how lucky you are and how much you have to be thankful for... all hell breaks loose! What's up with that?

Hang in there.

[Mike1964 in reply to Hidden]

Lol indeed. The picture I had was riding along on my bike, It's a beautiful spring morning, the birds are singing, I'm on my way to see my beloved, then some bugger sticks a metal pole through my front wheel and I'm doing my best superman impression over the handlebars!

[Hidden in reply to Mike1964]

Perfect visual of a catastrophic situation!!!!

[Mike1964 in reply to Hidden]

I thought you might like that. Are you actually in Brighton? I'm just up the coast in Eastbourne, I hope you've got the same lovely sunshine. Whatever is going on, its certainly better on a sunny day!

[SnazzyD]

What a dire situation which hopefully will be sorted out. Sadly this seems to be a recurring theme with people in misery while various docs pass varying judgements. It is awful feeling so bad without apparent reason. Regarding your blood results, I agree with getting a printout and ideally an old one too if you’ve had any tests. In particular your ESR and CRP. Not everyone has raised inflammatory markers with this. However, they might be raised for you, for example, my ESR was still in normal limits but it was raised for me, 16 as opposed to 4. Since Pred it is back to 4. Some docs accept this as a thing but most don’t.

I reminded myself about MG, there appear to be a number of tests you can have for that, unlike PMR/GCA, in particular an Edrophonium test and certain antibodies, so if they think you have this, they ought to crack on instead of making this just an academic excercise.

nhs.uk/conditions/myastheni...

[Mike1964 in reply to SnazzyD]

Hi Snazzy. Thank you for this. I did have a look once I got over the shock of getting back from my appointment Tuesday. Re the blood test and evidence of antibodies, I'm assuming these are what showed up on the tests as she seemed quite sure this was what I had. As i said, i really was quite shocked during my appointment and struggled to really take anything in much. I am feeling more positive today, thank you for caring.

[SnazzyD in reply to Mike1964]

Another reason for getting a printout, is being able to check what they have actually tested for as sometimes it isn’t what you think. Some tests require a trip to a hosp for practical or technical reasons. Also, if they reel them off verbally you can bet your bottom dollar you’ll have forgotten most of them by the time you get home.

[Bj2016]

My mother-in-law saw her GP a while ago and came back very upset about something the doctor had told her (in her case it was chronic kidney disease, she thought she had kidney failure and that the doctor had handed her a terminal diagnosis without further information or treatment.) I'm not suggesting you're in that situation, but I advised her to ring her GP and have a word about it. The phone call worked a treat. The doctor was able to give her the info that she missed during the consultation.

In your case, you have some information but it's no surprise that you couldn't retain everything and I'm sure your doc would be happy to have a further chat, if necessary by phone. Doctors are used to patients not "getting" everything especially after a bombshell like that.

All the best, B

[Mike1964 in reply to Bj2016]

Thank you B Yes a good idea to get some clarity.