Need help
Posted , 7 users are following.
February last year developed dryness. Had sinus issues. Ended at a RA full testing last april..and was negative for sjogrens. Tested positive for raynaurds, dry eyes and dry sinus and A1c 5.7 and some borderline liver thing abr postive but borderline all else perfect. Never drank nor drink. Only symptoms then was sinus and what seemed like tmj and very dry eyes. And developed tinnitus..pulsitile like a whirling sound and told etd. The tinnitus comes with sound sensitivty. That already stressed me. Its uncomfortable and annoying. I am 50 past menapause.
few weeks ago out of the blue felt like my throat all the way down by vocal cord pooling with fluid. Throat clearing a lot. Went to gastro..unsure said uses pepcid. Made it worse? Went to ent and he did some awful nasal scope..the meds he used dried me up like no other and last three days although no fluids in throat then..actually fely beyonf dehydratrd. That wore off and feels like someone holding my throat and drip. The ent said no reflux but nasal secretion thick in nose, not in sinus and felt drip was present. Butmi feel it come up from the vocal cord area more so then a drip doen personally or both. Had a week of my ears rining from the meds used. Scary and awful. That cakmed and throat clearing fluid tight thing came back? Provoke anxiety very hard to eat. I was using soft wet food so i dont get malnourished.
They have been running tests for the tinnitus, for pulsitile they do that. Stressful to say the least and still have an mra to go.
What is all this all this? Is this all connected to the dryness? I feel like it is but seems so intense.
prior to all the sjogrens like stuff i have an optic nerve pallor where perioheral vision was effected. No one knew why but said probably from a virus a while back. Small cataract and they watch my angles. That scared me. The angles. Limits meds right there.
Can anyone guide me here? I thought anxiety but its so ohyscial and diagnosable unsure how it is anxiety. Do get anxiety after throat clearing and coughing for a bit . And never had where eating was an issue like like. Physical issue. And im am so sensitive to medicines it is odd they dry me out bad or provoke tinnitus. This is not a way to exist. Feel like i will die slowly from all this as i need to be able to eat and not suffer with such oddities. I was handling it all now the throat , tight, fluid phlegm thing is making it very difficult to function.
Does this resemble sjogrens? Whats with the throat thing? I feel a bit like im loosing it. And i was handling it until the tight throat fluid feeling thing restarted yesterday. Again i can barely use medicines due to the optic nerve thing and oto toxic medicines. I just need to know if im going mad or these odd symptoms are related. Im ignoring nothing. I-saw an ent, i saw a gastro. Everyone gives an opinion on it but doesnt look at me as a whole person.just oarts.
0 likes, 6 replies
margaret22116 Lissa123
Posted
Yes def does resemble Sjogren's and your test can certainly be negative when you have it. Go to a better specialist who understands that. Poor you. Appropriate teatment is needed x
Lissa123 margaret22116
Posted
amkoffee Lissa123
Posted
I have to agree with margaret22116. I also have small cataracts but my eye doctor said they're so small it's nothing to worry about. Of course since I'm on prednisone it can cause cataracts so it was no surprise to hear that. And I'll tell you that I have not been officially diagnosed with Sjogren's either, my blood test came back negative. Fortunately for me my rheumatologist knows that the blood test can be negative so next week I'm having a lip biopsy done which hopefully will confirm it. Have you had the lip biopsy done? If not you certainly should have one done. Your ENT can help you with that. Good luck to you!
Nu2this Lissa123
Posted
Hi Lisabeth,
I would like to start by saying that you are not alone and you are not going mad. When reading what you are experiencing, I find that your symptoms are alot like mine. Mine started with sinusitis. I had a septoplasty to correct a deviated septum and clear the sinuses and I have not recovered yet. I have developed more symptoms than prior to my surgery. I never had issues swallowing, dryness in my throat but not my mouth. My nose is still congested. I been seen by several specialist but still no confirmed diagnosis. I never knew i was sensitive to medicine until I started taking placqunil. It started to dry me out and right after I started feeling severe joint pain. I don't know if this was triggered by the meds or the surgery. All i know is that Im not the same person that I was 4 months ago and I don't know what changed. I have my off days where I am scared to death because I am not in control of my body and I am a single mom with 2 kids that need me. The 2 things that makes everything better for me is prayer and my children . Honestly, I trust in God completely and know He has a purpose for me. Mentally I prepare myself every morning. Tell myself I am strong, I am healthy and I am with God. I take it one day at a time. I improved for 3 weeks. After my manometry last week I have seen a small setback. I had gained back 5 of the 20 lbs I had lost. I was actually eating solids. Today things have changed but Im determined that I will control this and not let it control me. What has helped me is the following besides the prayer:
Eat what you can. If you can't swallow, juice and nutritional drinks. Be careful juicing, see what veggies work for you especially if you have gastrol issues as some cause bloating. I eat lots of steamed zucchini, squash, eggplant, watermelon, avocado, melon and bananas. It takes me a while but I eat. At times, i notice water hurts so I drink luke warm milk, tamarac/ginger tea with milk. Make it to your desire consistancy only you know your throat. I also drink watered down apple juice and mango nectar juice because of its thickness. I avoid all sugar during these days. If you can eat solids keep eating. It almost feels as your throat went dorment and you have to wake it up.
I then walk around for a half hour or so, to get the food down and to avoid bloating because than I start to cough and gag. My GI says I have contractions in my esphogas and prescribed Ranitadine which has helped greatly. My Rheumotologist believes its Limited Scleroderma because i have tested negative for SS, sicca and most of everything but have a speckled ANA whatever that means. I am on the fence about taking methotrexate because nothing has been confirmed and it is a med with harmful side affects. For now Im keeping the faith and moving forward. Its tough and at times I am scared but God has got me and he is the only cure. Don't give up on life its too beautiful. If ever you need to talk you can message me. We can compare symptoms. Take it one day at a time. Oh and give your throat a rest. I avoid long conversations and sleep relaxes the muscles when I just can't get a grip on the sypmtoms
Lissa123 Nu2this
Posted
Are doctors so unaware of sjogrens? Im getting thinner and thinner. No one seems to care. I have all seperate drs. Eye dr...ent (tinnitus, pulsitile, flutter), tonsil stone thing now which miuth tastes awry), eating difficulties, nasea, and this weird right side burning. I do have a gastro appt on the 31st. And an mra saturday if i can even go thru with it with the tinnitus. My go gave me so,e anti fungals as i was in antibiotics six times last year with mostly simus issues (niw nasal dry as sicca must have took over) anyway all these drs dont even speak to each other. Theres onky so much time to speak and explain ineself in a dr office and i have too much. I wrote it down unsure if they care. I care. I have been too a lot of drs and tests this oast year and i cant stand it anymore. I just don’t feel well. Ewch issue is difficult in and off itself. Two family members are sick right now as well which scares me. I dont know how one lives like this. Im so limited with meds based on m eye..had an eye stroke a few years back so they watch inner angles and a little cataract. And my stomach is messed up. Which it was good until september. Too many antibiotics. So i cant even use the auto immune meds. My dr gave some anti fungals to rule out yeast and such in digestive system. So i took two of those so far. Although naseous right now and still have funny taste in mouth. He did blood last week said high cholesterol levels but otherwise bloods seemed good. So no help there. Wbs were up 3000 but still in the range. A1c 5.7 borderline ore-diabetic. So glad im ok on the bloods they chose to do..standard but i feel awful. Feel anxious at times but anyone would. I have to wait for the appointment and theres really noone else to go see. I saw the gp last week. The ent the other day. So now next gastro. I keep praying i heal up. Drs really dont seem helpful except to run tests and more tests. And with tinnitus and gastro stuff some tests involve dyes and meds that worsen it all. Personally id go the hospital but they are trauma centers where i live. And er docs not going to be very useful. So im home and cincerned but a part of me is surrendering because i dont know my own body anymore. Too many things going in at once. So so strange. Im so sad and tired of this. I sat outside everything is so lovely and and i cant enjoy it. Sorry to vent so negative. Im 50 and i feel done, and i always used to believe things get better and they did..but this is a lot at once.
margaret22116 Lissa123
Posted
Sorry but you are seeing the wrong docs. Gastro and ent could do nothing to diagnose me. I was diagnosed by an immunologist after seeing a rheumatologist. They are really your best port of call. ENT and gastro completely failed to understand what was going on with me. I wasn't diagnosed until early 40's with my problem after being all round the houses as you are doing now.