It’s one month later and I still feel awful and barely function. I know I constantly complain. I am tired of being shunted off for useless tests and to md’s who guess what diagnosis they will give. I have lost a lot of weight and still have trouble tolerating food. The nausea, cramping, pain and diarrhea have taken it’s toll on me. Last night I had to hit the ER only to find out I have a UTI and was dehydrated.
Then this morning I had a ray of hope. I have been searching for a gastroenterologist and found this doc in my plan’s provider directory. I went online and searched her name and kept finding high ratings. So I called and the guy I spoke to told me she only sees patients on Saturday because she teaches her specialty at the nearby medical school. She loved me! She was really interested in my Sjogren’s and kidney disease and other medical stuff and the impact of kidney disease on enzyme levels. She said that there are several factors including the autoimmune factor that could be affecting my recovery. She said I am a multisystem case and she would like to use my data as a case study! She said it is like solving a detective story.
She spent one hour with me and scheduled me for a colonoscopy and talked about possible findings and risks. She gave me hope that I can get better despite scaring the heck out of me in regards to risk for cancer based on family history and the higher risk that Sjogren’s brings. I refuse to allow this fear take root. I need my energy to recover from what I have now.
Oh, I am so happy to hear that you have found 'your Doctor'! I certainly hope that she can sort this out for you. We understand what it's like to feel so bad. I think 99% of us have Sjogrens, AND... As few of us just have Sjogren's, like this systemic stinker isn't enough!
I saw my Internist Wednesday and was asking him questions, making suppositions, and he told me not to underestimate what autoimmune can do, that it is constantly underestimated by everyone. I asked if he was referring to the Doctors underestimating it, and he repeated EVERYONE!
There is always a certain amount of fear of the known and unknown with illness, but I think this Doctor you found is up for the challenge of sorting this out system by system. I know this has given you happiness, hope, and relief. Just rehydrating and getting rid of the UTI should help make you a bit stronger, and more at ease.
Wow Cassi. Sounds wonderful. I hope she is great for you. I hesitate to pass on things that can be taken as medical advice since a) I'm not a doc and b) we are all so different, but I was wondering about the enzyme levels while reading your posts. The receptionist at my job has had an amazing turn around over the last 8 months or so after 20 years on a highly restricted diet. Her body seemed to react badly to everything. She finally found a nutritionist that really took time with her and started her on an enzyme that helps her digest and process food properly. Over the last many months she has been introducing one food at a time back into her diet with great results. Its funny and heartwarming to see her get so excited over tasting something again for the first time. She feels better, her color is better and she has put a little weight back on. I so hope you find what works for you too. Also, having a doc excited and interested in your case is a very good thing as far as getting to the bottom of what's happening.
And SK, its good to hear a doc acknowledging that AI is underestimated in lots of ways. Its very validating. You're right about the fear of the unknown but its worse when the doc is looking at you shrugging. LOL. Having one that understands how challenging it is helps a lot.
I am feeling better today. No more cramping and diarrhea. I guess that the new doctor was right and it was the medication that was giving me those symptoms. Who knows it might of been partially the UTI is well I have no idea. The best part is that I am not in a fetal position trying to find some comfort. The pain in the area of the pancreas is still there. At least one of the symptoms is gone even if it is only one day so far. It gives me hope.
SK I also agree with you about under estimating auto immune. This new doctor seems to feel that way also. I have talked to other doctors who don’t necessarily feel that way.
Enjoy Life lucky that your receptionist found a great nutritionist. I’d like to find one like that too. I am blown away by the fact that I’ve already lost 13 pounds in such a short space of time. I had been hoping to get a referral to a nutritionist before this started. I think that once I recover I will start a new search. I do not want someone who will just hand me a list of foods I can and can’t eat. I want someone who is more involved in helping me get the best possible diet. I am so happy your co worker found the perfect person to help her.
I’m happy for you that you found a doctor you feel comfortable with. & cares. This is a jewel in a sea of western medicine Insurance abiding practitioners. I pray your pain source is uncovered and your pain subsides completely! REST!
Thank you Sally. I had an ok day. I appreciate your support. I rest as much as possible. Today a woman from church came and brought soup for me and chili for my son. He is old enough to manage on his own and he thinks it is weird that she did this. He cleaned 95% of the house. The other 5% were the corners. I am not able to do these things right now. So I am lucky.
Oh Cassie, I am so pleased you have found a doctor that LISTENS and can relate, that's a huge mountain climbed. I too, have a marvelous Rhemy that I adore, but she is slow to recognize SS because some tests came back negative, but trust me I have SS for sure!! There is no doubt in my mind. My Psoratic Arthritis (PsA) was my first diagnosis of auto immune disease and by researching online I discovered that Ben's Friends also had a support group for those of us suffering with SS. Both sites have been a huge blessing in my life!
Nana does your rheum even acknowledge your symptoms? There are doctors that will treat based on symptoms.i saw my neph today for our routine visit. I love her because she listens. I thought I would just vent about my ongoing symptoms. During the conversation she found that I was severely dehydrated. Over the weekend the ER sent me home after telling me I was dehydrated. My neph arranged for me to go to an infusion center for a liter of fluids. I feel well cared for. A good md is worth everything.
Keep plugging and insisting on regular labs. Eventually you will get your positive result. What a crazy thing to wish for.
Nana does your rheum even acknowledge your symptoms? There are doctors that will treat based on symptoms.i saw my neph today for our routine visit. I love her because she listens. I thought I would just vent about my ongoing symptoms. During the conversation she found that I was severely dehydrated. Over the weekend the ER sent me home after telling me I was dehydrated. My neph arranged for me to go to an infusion center for a liter of fluids. I feel well cared for. A good md is worth everything.
Keep plugging and insisting on regular labs. Eventually you will get your positive result. What a crazy thing to wish for.
She is a fabulous Rhemy, and I hope she comes around. Both my dentist and eye doctor say I have it, so when I see her next week I will bring it up again. When I see my nero the end of August, I will make sure everyone is on board with diagnosis! Thanks for the support Cassi and I am glad you are feeling better. I have a rough time remembering to drink enough too!!!!