MRI Reveals Vasculitis-Caused Otitis Media in a Patient with GCA

[Lukee]

Hi all,

I wanted to post this study because early on I felt like many of my symptoms mimicked Giant-Cell Arteritis (GCA). I have also said that I feel as if my many other ear symptoms (fullness, tightness, feeling of fluid in ears, hyperacusis and sensitivity) seems to stem from TMJD that happened after I got tinnitus. I find it very interesting that GCA can in fact cause tinnitus as well as jaw claudication. For many people without a clear cause for their tinnitus and other symptoms, it's possible that we are missing the diagnosis of GCA.

Generally, it seems that GCA includes hearing loss but this is not always the case. I guess it's one more condition to keep in mind when conducting differential diagnosis.

 

[Maria Francesca]

Hi all,

I wanted to post this study because early on I felt like many of my symptoms mimicked Giant-Cell Arteritis (GCA). I have also said that I feel as if my many other ear symptoms (fullness, tightness, feeling of fluid in ears, hyperacusis and sensitivity) seems to stem from TMJD that happened after I got tinnitus. I find it very interesting that GCA can in fact cause tinnitus as well as jaw claudication. For many people without a clear cause for their tinnitus and other symptoms, it's possible that we are missing the diagnosis of GCA.

Generally, it seems that GCA includes hearing loss but this is not always the case. I guess it's one more condition to keep in mind when conducting differential diagnosis.

Hello,

Today I have a blood sample taken for ANCA antibodies. According to the internist, vasculitis could be a possible cause of neurological + ear issues, although in this case tinnitus is more frequently given in both sides. I will let you know. I will have results in two weeks.

 

[Maria Francesca]

No ANCA antibodies found...

Next Monday I will have MR with angiography to check for possible vessel inflammation in my head.

 

[Maria Francesca]

Hi @Lukee, nothing has been found in angio-MR.

It is like I am having mild Sjögren's syndrome symptoms not enough strong to come out in clinical examinations.

Nevertheless I am now embracing the immune Th1/Th2 imbalance theory. Sjögren is associated with increased Th1/Th2 ratio. Both my father and daughter have autoimmune diseases caused by Th1 prevalence.

With this in mind I am playing with all supplements, foods and factors which increase Th1 or Th2, and checking if they increase or decrease my symptoms. It is surprising how the results correlates with the Th1/Th2 imbalance theory.

Resveratrol, which increases Th2, clearly improves my condition. I take high doses, 1200 mg per day. Have you ever tried it? I say it because Wim Hof method could have increased your Th1/Th2 ratio, as it is known to strengthen immune system, which is not always good.

 

[Lukee]

Hi @Lukee, nothing has been found in angio-MR.

It is like I am having mild Sjögren's syndrome symptoms not enough strong to come out in clinical examinations.

Nevertheless I am now embracing the immune Th1/Th2 imbalance theory. Sjögren is associated with increased Th1/Th2 ratio. Both my father and daughter have autoimmune diseases caused by Th1 prevalence.

With this in mind I am playing with all supplements, foods and factors which increase Th1 or Th2, and checking if they increase or decrease my symptoms. It is surprising how the results correlates with the Th1/Th2 imbalance theory.

Resveratrol, which increases Th2, clearly improves my condition. I take high doses, 1200 mg per day. Have you ever tried it? I say it because Wim Hof method could have increased your Th1/Th2 ratio, as it is known to strengthen immune system, which is not always good.

Hmmm. It's very possible. I have taken Resveratrol in regular doses without much effect.

I would look into LDN. I'm not sure how it would work in Th1/Th2, something to definitely investigate. Unfortunately, these inner/middle ear conditions really do mimic and involve so many other similar conditions.

 

[Maria Francesca]

Hi @Lukee.

Finally I had salivary glands biopsy and results are positive. I have incipient Sjogren. I will take cortisone and then doctor will evaluate immunosuppressant drugs.

The doctor also explained me angiography can only evidence mophrological changes in blood vessels, not inflammation. The exam that can show vessels inflammation is PET. She proposed me that and made me choose. For now I decided not to have it.

 

[Lukee]

Hi @Lukee.

Finally I had salivary glands biopsy and results are positive. I have incipient Sjogren. I will take cortisone and then doctor will evaluate immunosuppressant drugs.

The doctor also explained me angiography can only evidence mophrological changes in blood vessels, not inflammation. The exam that can show vessels inflammation is PET. She proposed me that and made me choose. For now I decided not to have it.

Sorry to hear that, I'm sure it's not the news you wanted to hear. On the bright side, you can now work towards a treatment and hopefully that resolved some of your other issues. Sjogren's is usually connected to other autoimmune issue like RA or lupus or Chron's. I know some people that have managed to entirely put these AI issues into remission but it's a long-tricky road, unless you have a really good doctor or get lucky with a treatment that works immediately.

I mentioned LDN and I believe it would still be applicable to Sjogren's. I have read that it has been used successfully in treating SS so maybe it's something to consider. Have a look at this paper.

Hopefully you get the relief you need. Keep us updated on your progress. You already have done so much to figure the Th1/Th2 imbalance and resveratrol is helping you so that is great news!

 

[Maria Francesca]

I know some people that have managed to entirely put these AI issues into remission but it's a long-tricky road, unless you have a really good doctor or get lucky

Thank you for this info, this give me hope.

I think I have found a really good doctor. She is young and still doing research. Also really listens when I explain my weird symptoms, just the opposite of "it is all in your head" we are used to hear.

 

[rvs]

Hello @Maria Francesca,

Do you mind sharing what your symptoms are?

Thank you

 

[Maria Francesca]

Do you mind sharing what your symptoms are?

Hello, they are:

Tinnitus
Clogged ears
Mild hearing loss
Sounds reactivity
Tingling in the ear, face and left side of the body
Insomnia
Fatigue
Visual snow, sensitivity to light
Large dark spots in my visual field
Dry eyes
Troubles swallowing
Dry skin, dry ear canals
Sore throat
Canker sores

Nearly all my symptoms get worse with physical activity and during menstruation, also vary depending on weather.