Facial muscle weakness?

[Louise]

Hi All,

My name is Louise (40 year old- from Essex- England), I was diagnosed in Feb this year.

I have been doing OK on 10mg of Pred and Mycophenolate. When a few days ago I started to have ear, neck and head pain, then later that day I noticed facial muscle weakness (like when you have been to the dentist for a filling), I have also noticed a clear gel appear in the far corners of my eyes (Dr has give me drops for this) My Rheumy has said to up the Pred and will send me for MRI and wait for my blood results.

Can any one shed some light as I cant seem to find much on the net?

Look to hearing all your coments.

Louise

[Dirty Don]

Welcome Louise, since you're on a low maintenance drug diet, I would suspect you're experiencing a flare. Your rheumy is correct to up the pred, but I hope you get in for the MRI and blood tests quickly as WG numbers can go quickly. The facial muscle weakness could be the WG or a neuropathy of sorts, the eyes are often affected by WG...just watch it and get in soon. Best to you.

[renidrag]

Hello Louise, is the weakness just on one side? Has it affected blinking? I wouldn't wait on this.

[Alysia]

Hi Louise,
I dont think the facial weakness is related to WG. It can be somthing else. go to see neurologist.
welcome to the forum. I hope you will soon feel better.

[NikkiNicole]

I have not felt the facial weakness, but definitely pain and I currently have lots of floaters in my vision, including a black spot in my lower vision when I look up. I was just with the opthamologist who took pictures of the inside of my eye, retinas are fine, no macular degeneration but ... that's spot is still there!!!!
I hope that they get you on the right meds to get you feeling back to normal!!

[Marilyn]

I just got over pain in my right side of head, ear plugged, and jaw keeps popping out of joint. I have had shingles several times, came home from work early due to burning and severe pain on upper-inner thigh, a line of pain down the back of my leg to just above my ankle, then it circulates to the outer right side of thigh, I am in pain, took Tylenol with ultram, the pain continues. Anyone have the same thing? I have antiviral for the shingles, so hoping the pain will stop. My rheumatologist upped my imuran due to the increase of my ANCA from 80 to 670, I think that is what is causing the shingles so often. Please comment. Marilyn

[drz]

I just got over pain in my right side of head, ear plugged, and jaw keeps popping out of joint. I have had shingles several times, came home from work early due to burning and severe pain on upper-inner thigh, a line of pain down the back of my leg to just above my ankle, then it circulates to the outer right side of thigh, I am in pain, took Tylenol with ultram, the pain continues. Anyone have the same thing? I have antiviral for the shingles, so hoping the pain will stop. My rheumatologist upped my imuran due to the increase of my ANCA from 80 to 670, I think that is what is causing the shingles so often. Please comment. Marilyn

That much pain would be a definite indicator for me that something was wrong and needing attention. Remember Jack's advice that just because you have Wegs doesn't mean you can't have another problem too. For me infections often coincide with increase in Weg symptoms but other physical problems might also affect your inflammation markers but I don't know what else would move the ANCA markers besides GPA.

[Mikek]

My wife, Jenny had this facial weakness, caused by WG but prior to her being diagnosed as such (just yesrerday). Our ENT doctor explained that the facial nerve passes through the middle ear and can be grossly affected by a build up of pus and infection caused by WG making if difficult for the ear to drain. He had her admitted to hospital urgently and last Tuesday operated on the ear to relieve the nerve pressure and drain the middle ear. the facial weakness has now 90% improved. I am not medically trianed but I strongly reccomend that you see a doctor ASAP. Good luck with this.

[mishb]

I am not medically trianed but I strongly reccomend that you see a doctor ASAP. Good luck with this.


For some reason, I just read that as "I am now medically trained" and not as "I am not medically trained".

I did have a laugh and thought, yep he is correct, we could be medically trained for all that we have learnt about this disease and others that pop up :razz:
I will blame the pred, for making me read it wrong.


Louise, I didn't have any facial weakness, but my how the pain can radiate from the ear to the jaw.
I hope you see someone quickly, and get this sorted.

[Mikek]

Haha, in my youth I did voluntary ambulance work and I seem to remember trying out a stethoscope on a young nurse(or something along those lines) but that just about sums up my medical expertise.

[mishb]

Haha, in my youth I did voluntary ambulance work and I seem to remember trying out a stethoscope on a young nurse(or something along those lines) but that just about sums up my medical expertise.


You will be an expert in no time Mike.
One day you will know WG inside and out and be able to help answer questions for the new people that have just been diagnosed and are scared.

Most of us could teach our doctors a thing or two about WG, these days.

[Mikek]

Being in Tasmania and having read that this is an uncommon disorder, I half expected the doctors here to know little of it. I could not have been more wrong. The rheumatologist we saw on Friday quite clearly had a great deal of knowledge regarding WG (which he referred to by another name) and was able to instil us with confidence without downplaying the severity of the situation.

[mishb]

That's excellent news........my GP had no idea whatsoever but the ENT, he was on to it straight away and sent me to the rheumy's that also knew.

I guess he called it by the new name - we don't like that one :thumbdn: Granulomatosis with polyangiitis (GPA for short)

[pberggren1]

If Wegs is as prevalent there as it is here there should be about 100 Weggies in Tasmania. In North America and Europe at least, Wegs is about 1 in 5,000.

[Mikek]

That's right. I may be getting my threads confused.

[Mikek]

That sounds about right. That surprises me as I expected a much lower occurrence. I had never heard of WG until this week. I worked in libraries and information systems much of my life (I am retired now) as a photo tech specialising in microfilm systems and have always read a good deal but have never seen the term before. BYW we have a son in law who is Canadian and we have visited your country, the west side , quite a few times.

[pberggren1]

BC and the west coast is prob the most beautiful part of Canada. Do they live in Canada now?

[annekat]

I had a lot of weird sensations around my eyes in the early stages, could be described as weakness or numbness or more of a tightness. The docs didn't pay much attention to my eye problems, as they should have. But everything did clear up with my treatment of CTX and pred. You say you were only dx'ed in February of this year.... from my experience and what I've read on here, it seems pretty early to be only on 10mg. pred a day now, and I don't recognize the name of the other drug, but that could be a difference in the countries we are in... In any case, I'd concur with some of the others that you may be undermedicated and experiencing a flare. I would make sure that the doc you are seeing is well experienced with Wegs.... I don't know much about the geography of England but I know there are Wegs specialists there and several of our forum members go to them.... Check the Vasculitis Foundation website for a list of specialists that may be near you.

[Mikek]

Wondering how Louise is with her facial nerve weakness. Hope is improving.

[Louise]

Hi All,

Thanks for all the info guys.

I have now had results back- MRI and blood all OK, it seems that my I had a swelling in my facial nerve, the doctor put my Pred back to 30mg, which helped, they said because I have blockage in my middle ear and other problems my facial nerve may have had pressure put on it causing the problem. The good news is I am almost back to normal now.

Louise