Pmr/gca or myosthinia gravis? : I went to my... - PMRGCAuk

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Pmr/gca or myosthinia gravis?

pollymarierose
pollymarierose

I went to my rheumatologist for first time yesterday. He's doing bloodwork again to see what my level of inflammation is 2 months after diagnosis. Why? Because, although I have raised levels for pmr, I also have symptoms for myosthinia gravis and one other neurological auto immune disease (which name escapes me). MG closely resembles GCA. I was on information overload! There are too many auto immune diseases out there. So many similarities with slight variables. I'm also going to have a full body bone density scan which is supposed to be more thorough than an MRI. We will discuss prednisone after he gets the results of bloodwork. Has anyone else been through this?

All I know about my health right now is that I don't feel good, I'm in pain everywhere, and confused.

38 Replies
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Hidden
Hidden

Hi

You need to take a deep breath & wait for the blood results.

Please don’t over do Dr Google but use a reputed site for some information but don’t go into it too deeply until you have more of an idea what it actually is.

You have your Rheumatologist now, so that’s a big help.

I’m glad you reposted as more people will see it & be able to reply.

Kind Regards

MrsN

pollymarierose
pollymarierose in reply to Hidden

You're right. Google can drive you crazy! 😜

PMRpro
PMRproAmbassador

A bone density scan is nothing to do with an MRI - they show totally different things. I wonder what he meant...

Hidden
Hidden in reply to PMRpro

Could he mean a Bone Scan where they give you a Radioactive Tracer? In the Department of Nuclear Medicine.

I had one post surgery to check if anything else going on.

PMRpro
PMRproAmbassador in reply to Hidden

I did wonder that yes.

Soraya_PMR
Soraya_PMR in reply to Hidden

I had one of those to check for any inflammatory arthritis. Only highlighted the base of my thumbs, which I told them previously.

Rheumi also ordered a spine MRI. This was to rule out AS and other back issues, it just showed one bulging disc (an improvement since my mid 30’s!).

These were ordered when I was stuck at 8mg, and rheumi felt it might be something other than PMR. All came back negative, so still PMR as a diagnosis. It’s what they do, eliminate other possibilities to narrow their differential diagnoses.

pollymarierose
pollymarierose in reply to Hidden

After 2 hours and all this information coming at me maybe I just put MRI together with bone density scan. Maybe it was scan over because x Ray's don't show much.

Hidden
Hidden in reply to pollymarierose

Sometimes it’s good to take a friend with you as you can’t always remember what was said. Just relax now & put your feet up, no more Dr Google 👨‍⚕️

pollymarierose
pollymarierose in reply to Hidden

My husband always goes with me because of that very reason.

pollymarierose
pollymarierose in reply to Hidden

Sounds more like it because my husband said he didn't want me to go through one unless absolutely necessary.

One day someone will join up the dots on these diseases.

If you are on Prednisalone, I wouldn’t expect much inflammation to show up. The bone scan ( Dexa) is recommended for people taking steroids because they can have a detrimental effect on our bones and allow the development of osteoporosis. I thought the MRI was just a different kind of test, looking for different potential conditions. I am not surprised that you feel confused. How were the neurological diseases diagnosed? You have only been diagnosed with PMR for a few weeks, is that right?

I hope this is sorted for you soon, your head must be swimming.

Thank you. It's so frustrating having some of this, some of that. Actually a lot of this and a lot of that. But, missing a smidge here and there. I am going to try and be patient til we connect the dots.😟

It seems we are in the same boat...ive stopped the googling pretty much, too😇

Hope you feel better soon.

I hope you feel better too! ❣

Myosthinia, now what is that an the effect on your health ?? Hope you don’t mind me asking 😁

As far as I know, it has most of the same symptoms as pmr/gca. The face though can become droopy, especially the eyes, difficulty swallowing, hives, extreme muscle weakness. It's pretty confusing since there seems to be such a fine line between the two

I am in a very similar place at the moment , Pmr since June 2015 . 7 weeks ago had terrible headache was on 5mg pred, suspected GCA hospital increased pred 50mg at Rhuemy’s orders, after a few days No real improvement, so over a couple of weeks came back down to10mg , tried 9.5mg headaches start again , now both my eyes top lids are drooping , eyes are ache and sore gritty in the night my mouth and tongue are bone dry , had a CT they said it was ok . PMRPro mentioned MG , my Rhuemy said no as I have no muscle weakness, i am seeing a private neurologist on Tuesday , my fatigue is worst I have ever had with this autoimmune stuff , I get really chesty my voice goes funny then I know it’s time to rest , i’m Told this is classic MG , just hope the Neurologist can sort it out as the Rhuemy said it’s not his department 😩 do you have any of those symptoms ?

Gaz227
Gaz227 in reply to Gaz227

Forgot to say google can be our best or worst enemy , it can cause terrible anxiety , I have stopped using it for now , my GP as advised me to see a councillor and I believe google was the cause of my anxiety , it’s to easy to diagnose yourself , but I think we all know that .

PMRpro
PMRproAmbassador in reply to Gaz227

Google can be great - but you HAVE to be aware of what is potentially guff and what should send you to speak to a professional.

In fact, the best PMR doctor in my GP practice used google all the time - and taught her colleagues how to use it properly! In Scotland they used the media a bit differently 40 years ago: every GP read the medical article in the Sunday Post every week to know what they would have to dissuade the punters about on Monday morning ...

Gaz227
Gaz227 in reply to PMRpro

It would be interesting to see a survey on what percent of GP’s have had to revert to Google when patients have presented unusual symptoms.

Hidden
Hidden in reply to Gaz227

I’m sure they do! 😉

PMRpro
PMRproAmbassador in reply to Gaz227

Maybe more interesting might be which of them manage to use their critical skills to get it right! In my experience a lot can't have been awake in certain lectures...

I do. The weakness is horrible. For about 6-8 months now my voice gets really hoarse when I talk. I have a cane now just to get around my home.

Have you got the droopy eye lids also , and any chest pain as I believe the thymus gland which is in the chest has a lot to do with MG , I get a pain in my sternum , Rhuemy said it was muscular skeletal and a common symptom , I had a chest X ray done some time ago but they never picked anything up , I wonder if that would be visible on an x ray or would it have to be an MRI or a CT . Whole things just a minefield .

I don't have droopy eyelids but I do get pain in my sternum once in awile.

I know pred is one of the medications for MG what dose I don’t know , are you on other MEDs for this condition ? And what tests ie bloods or scans have you had that made them come to there conclusions , sorry to through all these questions at you , when I seevyhe Neurologist in Tuesday I want as much info with me as possible . 👍

Hidden
Hidden

There seems to be a connection to the nervous system somewhere. In my case, it isn't clear if it is autoimmune related or medication induced.

Funny story about Dr Google. I once was in the ER (A&E?) for a rather severe neurological problem. My wife did all the talking because I was incapacitated and couldn't speak but I could hear and understand everything. The doctor decided to use some exotic IV medication. My wife is a nurse and asked the doctor what made him think of that particular medication. The doctor replied, "I googled it!"

PMRpro
PMRproAmbassador in reply to Hidden

Better than the plonker who was on take the night I was admitted with a transient global amnesia - correctly identified by the A&E consultant I'm told by my husband. The plonker decided it was alcohol withdrawal (my husband had mentioned I'd had a glass of wine the previous night!) and ordered a "banana bag" - a concoction of B vitamins used for alcoholics in withdrawal. Now I'm not saying this gentleman's ethnic origins influenced his mental processes but I'd have prefered he had used Dr Google. That is on my notes now - my GP thought it was hilarious!

Hidden
Hidden in reply to PMRpro

My wife just reminded me about what the doctor said after the medication was infused. When everything seemed to be normal, I stood up to leave and nearly fell down and told the nurse who was discharging me that I was extremely dizzy. The nurse who was discharging me said, "we fixed one problem and created another." and dutiful reported it to the doctor. A few minutes later the doctor reappeared and said that he googled the side effects of the medication and dizziness was listed. He was "somewhat confident" that the dizziness would resolve quickly because google said so.

PMRpro
PMRproAmbassador in reply to Hidden

At least he bothered - others have been told that something "doesn't happen with drug x" despite it coming up as a major side effect according to Dr G!!!!

Telian
Telian in reply to PMRpro

So do I!

pollymarierose
pollymarierose in reply to Hidden

My doctor is checking for an auto immune disease that's related to the nervous system.

FYI, a friend of mine has MG. He could not hold his head up, that was his primary symptom. Came about in the same year he had shingles. He responded well to prednisone and blood infusions, which are performed at his residence by a visiting nurse. Not a perfect solution, but the quality of his life is good.

I have had polymyalgia 3 years treated with prednisolone and 3 months ago my left eyelid closed and I had double vision when eye was taped open. I was diagnosed with MG by a blood test. Two weeks ago I saw a MG specialist who put me on Pyridostigmine tables in conjunction with steroids and this has improved the symptoms considerably. I will probably be on these drugs the rest of my life but my quality of life is good.

Hope you manage to get sorted in the end. I have to have various scans etc to make sure the thymus gland isn't cancerous. I am prone to auto-immune diseases having vitiligo, many food and other intolerances. Hope you get it sorted soon - the waiting is intolerable.

Thank you. Your words are encouraging. I wish you all the best too! These diseases can be pretty discouraging unless we're able to talk to our other friends in the same situation. Take care!

Yes it is such a help to talk calmly to someone in the same situation otherwise you feel so alone. You will find there is an MG helpline found on the MyAware website. When I contacted them they sent me all sorts of useful information some of which is quite scary but you have to remember that on the whole most people can lead a very normal life once the condition is diagnosed and the front line treatment started. The best thing about it is that steroids treat both conditions so it is killing two birds with one stone!

Do you have PMR also? My rheumy says I have symptoms for both. The severe weakness and the sudden onset of it has him concerned. It's to the point where I just want the bad news so I can get the proper treatment.

Yes I have had PMR for 3 and a half years now and tried to get off steroids which is when the symptoms I have had in my eyes a couple of years suddenly got worse. I was tested for GCA but thankfully didn't have it but stiffness was increasing so went back onto 5mg steroids which stopped the stiffness and helped with the dropped eyelid. There is a blood test for MG which should take 2 weeks but due to Xmas and New Year and staff holidays took 6 weeks. I do hope that you get resolution quickly - it's the unknown element that causes such anxiety. I find now I am on treatment I feel so much better. All love and best wishes.

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