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Sjogrens Topics => Living With Sjogren's => Topic started by: gregtdj on March 15, 2021, 09:38:18 PM

Title: Possible SSD Newb
Post by: gregtdj on March 15, 2021, 09:38:18 PM
Hello one and all. I am in limbo for now as I just had an MRI (brain and left side study) today and am hoping to have results and talk with doc about at appt tomorrow afternoon. Experiencing random pressure in head, dry mouth, dry eyes along with muscle weakness in legs and arms that has had me out of work since a possible flare Valentines Weekend. I am experiencing a dry throat from time to time with a stiffening neck. I occasionally feel like a lump move or it feels like there is a crack in my throat that happens and then I have lots of liquid.

I am wondering about the lots of liquid part. I have been studying to learn more about SSD beyond what I knew of my mothers secondary diagnosis and haven't seen a lot about this type of experience. It feels as if something cracks open and I can feel drainage coming from under my ear and seemingly behind it. It can be a little but a couple of times now I have suddenly had a lot of liquid come gushing down my cheek and into my throat and choke me as I ate. Or it will feel like a slow drain of a little bit of grit, maybe river silt. Is this a feeling anyone can relate to and if so how do you handle it? I have been gently massaging my cheek and neck, and popping jolly ranchers to keep my mouth wet. Is there another trick to try that's along the simple and natural way to help this issue or is it not normal?
Title: Re: Possible SSD Newb
Post by: Floridalady on March 16, 2021, 09:54:09 AM
Hi Greg. I don?t have the issue you are speaking to specifically so I can?t be helpful in that area.
Biotene  products are for the dry mouth. I take the medicine Evoxac for dry mouth to stimulate saliva and Restasis for my dry eyes. I use Theratears preservative free eye drops and Genteal gel at night. All of these can be bought at Target except prescription meds.

Hopefully, someone else can be of help with your other issues.

Title: Re: Possible SSD Newb
Post by: meirish on March 16, 2021, 12:26:14 PM
I can relate to a lot of which you speak. Welcome to our site. We have people who have struggled for years with a diagnosis and with these really weird symptoms. I had this cracking feeling in my throat plus the lump that seemed to move and come and go. Lot of weird feeling that went into the sides of my mouth--head--whatever. Could not explain it to my doc or even to myself. I started with some symptoms back in 1964 and it took me until 2003 to get diagnosed with Sjogrens.

When I started out no one hardly spoke of Sjogrens. I am a retired RN and was only vaguely familiar with sjogrens. I know of lupus and myasthenia gravis, scleroderma and a few others only because I took my training in Rochester, MN and we had a floor that dealt with these patients with weird diseases. I doctored for years with problems that went all over the radar and would come and go and my docs had be pegged as "nutZ". I finally honed in on the autoimmune diseases for a diagnosis only because of diagnosis of exclusion. They had excluded everything else.

Now remember, I am 78 years old and have lived through some weird stuff. I have been with my excellent ENT who has a specialty in base of the brain disorders and surgery. He has been with me on this journey and we have tangled...sometimes frequently and both of us gotten crabby but he never turned me away. Finally diagnosed me with a lip biopsy that came back negative when he told me "no way do you have Sjogrens". Well, guess what. Bingo. His attitude really changed and he has admitted to being educated by me issues.

Now, The feelings in your throat strike me as your saliva ducts getting plugged up at times and then opening up with the gushing of saliva. With this could come some gravelly stuff as we can make stones in our salivary glands that will travel through our ducts and get stuck sometimes. This results i severe pain and often infection. It is miserable and you can have spasms in those ducts as they try to pass even the small bits of gravel.

Going to next page as this is long. meirish
Title: Re: Possible SSD Newb
Post by: meirish on March 16, 2021, 12:49:01 PM
The cracking feeling in the throat is from the dryness that gets really bad at times and can be helped by sucking on ice cubes or chips. Drinking water down all at once off and on is not enough as it is a start and stop treatment. Sometimes eating soft puddings and apple sauce will coat the throat and help decrease the dryness. Try not to eat anything spicy or hard like popcorn or chips, raw vegtables, etc.

The Pressure in head is a feeling that I had for years and felt like my head was as big as a basketball and felt spacey at times. Over the years with all my issues and treatments plus surgeries I have learned that the lymph tissues in our throat and sinus area under tongue and in our neck can hbe affected by Sjogrens because of the auto inflammatory process that goes on in our body.

It turns out the eustachian tubes from the ears that drain into our throat can swell up and make us have pressure and even have issues hearing at times. The tonsil tissues are affected and shell and will affect our swallowing. I have had to have my tonsils shaved under anesthesia or zapped with laser to decrease some of my issues. We can have fluid in our ears because of the swelling of the eustachian tubes resulting in ear infection. I have had that and have had to have tubes in that ear 5 different times.

Another thing that you should have checked is for hypothyroidism and you should have your TPO or Thyroperoxidase level checked to see if you have an autoimmune disorder called Hashimotos that attacks our thyroid. I guess some people have had the Hashimotos without having actual low or high thyroid.

Sjogrens can affect many areas of the body and this includes muscles and tendons. Pain and aching that lasts longer than just overuse is something that should be mentioned to the doctor. I am due to have my 4th carpal tunnel surgery and probably will have the 5th down the road. Repeat surgeries on 2 wrists due to carpal tunnel due to inflammatory disease, ie Sjogrens.

 I had  brain cat scan years ago when I started with my neurologist due to my myasthenia gravis which is a neurological disease. This scan was to rule out other diseases that can mimic Sjogrens and be hard to differentiate. It is good to have this done as a baseline for comparison if we have any other weird issues in the future.

Do not panic. Get the testing done and be thankful if you have doctors who listen and take some time to figure out what is going on. Patients who have chronic diseases are not always gratifying for doctors to deal with cause they can't cure them. But if they can make a difference in someones life and living they should be thanked profusely. I always joked that I had helped put my ENT put his kids through college.

Find a very good, experienced ENT who will hang in there with you. You will need help with salivary gland issues through the years. I had to have my right submandibular gland removed back in 2009. You want really good people doing these delicate surgeries that involve nerves in the face. Find one who deals with autoimmune diseases a lot and does frequent surgeries like this. Also not every ENT is experienced in doing lip biopsies so check that out. Once to twice a year for a doc is not enough experience. Takes only a nano second but needs experience. Good luck and keep us posted. perish
Title: Re: Possible SSD Newb
Post by: gregtdj on March 16, 2021, 04:39:00 PM
Bless you both. Thank you floridalady for the run down on things to use. Currently using restore, walmart brand i think for the eyes and atm jolly ranchers for the dry mouth. Extra big thank you meirish for the detailed info. Thyroid is in range, but low end atm. I'll ask about the TPO on the next go!

Results came back, attending was so surprised by the way I reacted she only went over the brain scan. I'm not sure if the neck was a concern because I didn't even notice we hadn't discussed till after visit. Brain scan showed chronic ischemic lesions in white matter, going for a spine and being sent to a rheumatologist as I have muscle involvement or impairment. She is suspecting possible MS, after my research and dealing with my mothers issues I steered her to include some looking at sjogrens so they are adding the test for it ion blood. I'm assuming its the ana as they had already ran my RF factor. Either way, another study and more tests. The road continues, but your advice has been very beneficial and helpful in my quest for answers. Thank you.
Title: Re: Possible SSD Newb
Post by: meirish on March 16, 2021, 06:01:30 PM
That is very interesting about your brain scan as MS is one of the diseases that they have to rule out as it can mimic Sjogrens in some ways and is hard to differentiate at first symptoms.

Yes, Sjogrens can be primary and stand alone, but it can also be secondary and show up with so many other autoimmune diseases. RA has Sjogrens tag along with many people as does Lupus. The thing with lupus also is that it is virtually a second cousin to Sjogrens.  My immunologist had suspected lupus most of the time with me but I just never had the final positive DNA blood work. Actually, as you will find as time goes on, there can be symptoms of an autoimmune disease and yet have no actual positive blood work. This makes it harder for doctors to diagnose and treat with the specific medications for the ailment.

I hope that you will continue to have the good care that you seem tone receiving. Know that if it is positively MS there are so many new drugs out there. I know a couple people that have been doing well for many years on the medications. Makes for a more positive future.

One thing I have always like to tell people dealing with an autoimmune diagnosis is that it is not the end of the world. It will be a different world that will take time to adjust to and will often need changes made in ones life. I always suggest living frugally and sensibly (like we should anyway but is hard) and learn to enjoy a slower pace of life and smell the roses. Ones family will not suffer unless one  keeps reminding them that they are suffering. Living in the moment and enjoying the more simple things in life make all of us more appreciative of what we have.

There are many of us who have to slow down and find a less stressful way to earn a living. Do not think that we are being punished but think of it as a challenge to explore more of the world. There are so many nice people and good ways to earn a living. Hang in there and be a good advocate for yourself and you will endure. That is what chronic disease needs is a person who can be tough when things get hard and endure. In between the valleys there seems to be hills that give us time to enjoy and reap so many of blessings in life.

Know that if needed there are many places to ask for help and the best place to start is with the social services at a medical clinic or hospital and also the community health and social services. Good luck and keep us posted....We all care. meirish