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Posted 3/12/2012 1:19 PM (GMT 0)

I have had severe nasal swelling to the point where I can't breath through my nostrils when it occurs. Along with the nasal swelling is pain in the gums and my front teeth. I have a high ANA, which indicates that there is swelling in my somewhere in my body. I know the swelling is in my nasal passages. Other blood work indicate some form of auto-immune problem, however, when blood test, associated with each indicated are run to confirm, none of the blood  work will confrim any auto-immune dieases. I have had a complete sinus, allergy and brain work-up and my sinus is clear, only shows the severe swelling in the nostril, no alergy's and no problem in the brain.  The only medication that helps is prednisone and we all know the side affects of prednisone.

Just recently, I have also developed symptoms which indicate Meniere's Disease,( tinnitus, vertigo and sudden hearing loss). But again, my blood work does not support Memiere's diseaase. With the hearing loss, my doctor increased prednisone to 60 mgs. per day and it has appeared to move the loss from 12% to 40%. I go back in 1 more week to talk about prednisone shots in the ear drum. However, that still will leave me with the nasal swelling, gum and teeth pain.

Is there anyone out there who has had this experience?

Posted 3/12/2012 1:55 PM (GMT 0)

     Good morning amptjre!

         Welcome to the CP forum! As I read through your post, and a couple of thoughts hit me, and I wonder if you have possibly thought about Lyme Disease....it's very hard to get diagnosed, and Lyme patients would tell you to make sure you see a specialist in this area. Some of your symptoms seem in line with this, however there are many things that can cause your problems....like Sinus Disease that can indeed cause your tooth and gum pain.

   Good Luck!...and keep looking ...and seek different professional opinions.

     SE

    

Posted 3/12/2012 4:23 PM (GMT 0)
Welcome to our forum

Have ypu had dental xrays done of your upper arch of teeth plus a panorex of the entire mouth and sinues?

Just to rule out teeth abcessing.

Soft Hugs
Betsey
Posted 3/12/2012 6:57 PM (GMT 0)

I have been tested for Lyme disease and those test were negative. I have had dental exams and xrays and my dentist said that all is well. I have been seen by a rheumotologist, allergist, seen by someone in neurology and I am now seeing my fifth (5th) ENT. The fifth ENT seens to have a direction for my hearing problem and within the next week, I should know about the shots in my ear drum to reduce the need for the steroid for hearing. That still leaves the nasal swelling, gum and teeth pain.

Thanks for your response

Posted 3/12/2012 7:11 PM (GMT 0)
Hello and welcome to the chronic pain forum. I don't have much to offer since things I think could be the culprit you say have been ruled out. My only other thought would be to obtain a copy of all my xrays that have been made, along with medical records and be seen in consultation at the closest teaching hospital to see what they think. It pretty much sounds like you have ran the gambit with drs. I think its terrible that no one has been able to come up with a definitive diagnosis. This is why I think a teaching hospital may be the next thing in line. The teaching hospitals seem to have a leg up on things that our main stream drs just don't have.

I do hope someone can help you with all of this. Take care.
Posted 3/12/2012 9:58 PM (GMT 0)
The last three ENT's are at a teaching hospital. The last two are working together with my primary care physician to see what they can come up with.

I hope there is a resolution soon. My son and his wife just had twins and My husband and I really want to enjoy them. With twins, I won't have time to be sick.

Thanks for your response and concern.

Posted 3/12/2012 10:23 PM (GMT 0)
Oh my congrats on the twins and you are so right, you do not have time to be sick. I have one grandchild and he is the love of my life. Enjoy them as much and often as you can, they grow up so fast.

Hopefully these drs can pull something together to get to the bottom of this. Please keep us posted. Take care.
Posted 3/16/2012 12:42 PM (GMT 0)
Hello, i wanted to welcome you to the group here. Glad you found but sorry you are having so much pain.
Perhaps an mri of the head will show something up, or a scope of the nasal passages to see if there are any abnormalities. Have you had a hearing test? Have you tried any nasal sprays? did they help at all?

Congrats on the twins. Oh you will have so much fun with them.

Hope others come along and have more ideas to offer. In the mean time keep us posted on how you are doing.

Suzane
Posted 5/4/2013 6:26 PM (GMT 0)
I have the exact same problem for almost 10 years now. I went to see multiple ENT doctors, neurologist, etc. It feels like my ears are full of water but I can still hear. Burning sensation down the side of my nose and around my eye. This pain is only on the left side of my face. It is constant and I haven't been able to breathe properly through my left nostril. The pain got so bad recently that I went and bought some arthritis cream and some got in my eye and caused an extreme burning sensation but then provided some relief. I looked at the label and it contained capsaicin. So, I went online and found that there is capsaicin nasal spray. I have been using that for 2 weeks now and this is the first time something has worked to reduce the pain. I really do believe that it has something to do with the frontal sinus being clogged and its difficult for the ENT doctor to diagnose without performing surgery. I am going to continues spraying this for another month and see if it unclogs my left sinus as it is helping.
Posted 5/4/2013 9:03 PM (GMT 0)
Wow, it sounds like you have been through the mill.

Well, in addition to the several ENT's in my area, I also saw an

ENT at Mayo Clinic. I had asked my primary care physician to refer me. I visited Mayo clinic five times in four months. During that time, I also saw many other specialist, had a needle procedure in my right face and nasal surgery. They did find a small mass behind my optic nerve, I forgot to say, I started losing sight in my left eye, too. The first procedure was for biopsy but was not conclusive. The surgery was also for biopsy and that also was not conclusive.

They believe I have an auto immune illness that they can't define. So, they started me on a auto immune medication. My case was sent to my doctor and he monitors me. After taking the auto immune medication for three months, my doctor started to ween me off the prenisone. Since January, I have gone from 60 mgs. per day down to 2.5 mgs. per day. My sight in my left eye is improving. However, for the last month, I have had significant body and muscle pain. After running many blood test, my Dr. says it is probably prenisone withdrawel. Thanks be to God, I finally started to get SOME relief this past week.  I have had several massages over the last 10 days to assist with the relief. I know I will be healed soon.

Thank God, It sounds like you are having better results then I had. I hope you continue to have good results and I will pray for your healing.

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