Most of you know I have been on the diagnostic merry go round once again. This time I have just finished a lot of testing with a gastroenterologist. I had a message from her to see her tomorrow so we can discuss where we are going next.
So here is the argument I am having in my head and driving myself nuts.
Argument 1: She found something and we need to discuss options. This is a mixed blessing. it validates my ongoing symptoms and I am not nuts. Or, there is something new going on and we have to figure out a treatment plan.
Argument 2: There is absolutely nothing in any of the tests and she wants to do another kind of test.
Argument 3: She refers me back to my rheumatologist because my symptoms are not related to GI issues
Argument 4: My rheum tells me all my AI tests are negative and she has no idea why I am claiming symptoms. she has already told me she is not changing the treatment plan.
I would normally tell anyone else in this situation that worry is not helpful and to just wait for further info. I am driving myself crazy. I am tired of the itchy rash and joint pain and difficulty walking. I am praying something shows up so they will treat me and give me relief.
It drives me crazy when doctors give such vague phone messages and won't tell us more until we see them in person. It makes patients crazy because they think of everything under the sun about what could -- or could not -- be going on. Know that you are NOT crazy. Anyone would be frustrated going through the same thing. Do you know if they tested your pancreatic enzymes? Maybe that is the test they want to discuss because maybe it showed a severe decrease in them.
And I also get furious when the AI tests don't come back positive yet -- they act like there is nothing wrong! Just infuriates me because there is no clear test for this for everyone if you have it.
I know Stoney. You are right in that I should be glad for the opportunity to do this in person and not over the phone.
DLT they have not tested my enzymes since last month. I am feeling so grumpy. I just want answers now!
I hear you, Cassie! It's the old hurry up and wait! I'm sure your mind must be racing! Hopefully your Doctor is using this 'waiting time' to further explore options, so maybe this will put your mind at rest a bit.
Time for a distraction until you can get there and get the low down!
Cassi…Yes!!! I hate when that happens. I do the exact same thing. Our mind always roams around to the worst possible scenario….. With these things we deal with I think we want to be braced and ready for whatever odd thing life is throwing at us. I can so empathize with that one.
I can honestly say I know exactly where you are coming from and I totally sympathize with you. I’ve been exactly where you are, wishing something would show so the drs didn’t think I was nuts as well. But with that said, now everytime I go to the drs they find something else wrong, and I wish it would stop. I hate to go to the dr for that very reason now. My mom used to tell me be careful what you wish for, because it might just happen. Unfortunately it has. Now the drs get answers to everything, good and bad. So please, don’t think everyone is going to think your crazy, you know you aren’t, you just have something elusive that maybe doesn’t want to make it’s exact presences known. Hang in there tho, it will all fall into place when the time is right.
So how did everything turn out? What meds are you on? Itchy rash and joint pain can be side effects of some of the Sjogren’s medications that are prescribed. Did you see the gastroenterologist for acid reflux? Another side effect of prednisone?
What I hate is going to internal medicine doctors who treat you as if you have a normal immune system. I had something irritating my lungs causing bronchitis symptoms and he prescribed augmentin for 10 days with mo anti inflammatory drugs. That was equivalent to giving Sjogren’s crack cocaine! Inflammation raged out of control, I developed pleurisy and severe acid reflux and thrush in my esophagus and ulcers in my lower gi. So now I’m being referred to a gastro guy because they think I have lesions in esophagus, diaphragm and lower gi. My pet peeve are doctors that don’t talk to one another!
So how did everything turn out? What meds are you on? Itchy rash and joint pain can be side effects of some of the Sjogren's medications that are prescribed. Did you see the gastroenterologist for acid reflux? Another side effect of prednisone?
What I hate is going to internal medicine doctors who treat you as if you have a normal immune system. I had something irritating my lungs causing bronchitis symptoms and he prescribed augmentin for 10 days with mo anti inflammatory drugs. That was equivalent to giving Sjogren's crack cocaine! Inflammation raged out of control, I developed pleurisy and severe acid reflux and thrush in my esophagus and ulcers in my lower gi. So now I'm being referred to a gastro guy because they think I have lesions in esophagus, diaphragm and lower gi. My pet peeve are doctors that don't talk to one another!
My GI results were negative. My endoscopy said I have gastritis. The growth they removed from my stomach was non cancerous. But, I still do not have the biopsy results from my small intestine. I had expected that she would have had them when she asked me to come see her last Saturday but all she did was rehash what I already knew.She also told me that I was only allowed 2 500 mg tabs of Tylenol per day. I looked at her as if she was an alien! I am not supposed to take ibuprofen because of my kidneys so now I have no idea what I’m allowed to take for pain. Two Tylenol in one day is not going to cut it. She did send me for another set of labs and promised to have those results and the biopsy results. She should have had them by today but she has not returned my call.
In the meantime that blasted rash continued to torture me. I made an appt with a derm who was highly recommended. Best part is that he is only three blocks from my house. The worst part is that my mobility is so limited I had to stop twice to rest just to get that far.
He is an older guy but nice enough. I gave him copies of the last two skin biopsy reports which suggested mosquito bites. If that was the case I must have been struck by a swarm because those bumps were all over my lower leg and arm. He tried to suggest I caused the rash by scratching dry skin. Then he changed my mind and decided to biopsy my lower leg. He knew about Sjogren’s and has a younger patient with this diagnosis. He is going to find the name of a rheum connected to NYU so I can go for another opinion.
Whew! Long story" just frustrated. Thanks for asking and for being patient with my vent.
So now who do you have to go to about addressing your pain? Can't they solve the problem there, rather than run you some place else yet? That's the problem with specialists, they are SO centered on one thing, that they forget we are ONE UNIT! Don't get me wrong, I have tremendous respect for good Doctors, but they some can really run you. I try to stick to my GP and Rheum, but you really did need a digestive specialist and a Derm! I hope they can get you to a better place very soon!
I got the talk about going over the daily allowance of Dapro from my Rheumatologist! He told me I was better to take more morphine and less of the NSAIDS! Who would have expected that? Most Doctors treat you like a junkie if they know you take one on occasion! Hopefully your GP will be able to solve this for you!
Have you tried an over-the-counter lidocaine solution? Lidocaine takes the burn out of itching and sores. There is a prescription crime that works better but the OTC one works pretty good. I’ve found that whatever problem I run into is better treated with some sort of anti-inflammatory property so lidocaine makes sense. Also, I have a medicated soap that cleans sores and helps them dry and heal faster. Hope that helps.
Cassi440 said:
Hi Mary and DLT My GI results were negative. My endoscopy said I have gastritis. The growth they removed from my stomach was non cancerous. But, I still do not have the biopsy results from my small intestine. I had expected that she would have had them when she asked me to come see her last Saturday but all she did was rehash what I already knew.She also told me that I was only allowed 2 500 mg tabs of Tylenol per day. I looked at her as if she was an alien! I am not supposed to take ibuprofen because of my kidneys so now I have no idea what I’m allowed to take for pain. Two Tylenol in one day is not going to cut it. She did send me for another set of labs and promised to have those results and the biopsy results. She should have had them by today but she has not returned my call.
In the meantime that blasted rash continued to torture me. I made an appt with a derm who was highly recommended. Best part is that he is only three blocks from my house. The worst part is that my mobility is so limited I had to stop twice to rest just to get that far.
He is an older guy but nice enough. I gave him copies of the last two skin biopsy reports which suggested mosquito bites. If that was the case I must have been struck by a swarm because those bumps were all over my lower leg and arm. He tried to suggest I caused the rash by scratching dry skin. Then he changed my mind and decided to biopsy my lower leg. He knew about Sjogren’s and has a younger patient with this diagnosis. He is going to find the name of a rheum connected to NYU so I can go for another opinion.
Whew! Long story" just frustrated. Thanks for asking and for being patient with my vent.
I totally concur with you SK on doctors forgetting we are ONE UNIT. I even read by an MD that the reason 'autoimmune diseases' are divided up into Sjogrens, Hashimotos', etc. is because doctors are divided up like that and there is one doc for our thyroid, one for our joints, etc. Otherwise she said the AI condition is systemic and the whole person needs to be treated as one unit. But if we have Hashimotos, we have to go to an endocrinologist; RA, a rheumatologist, Sjogrens, a gastroenterologist, a dermatologist, a cardiaologist, etc etc. A different doctor for every freakin' part of us. It would be nice to have a good doctor that could handle the entire body and would care about the entire system and how it all works together caring as much about the liver as they would the kidneys, etc. Sorry for the rant.
SK said:
Hi Cassi,
So now who do you have to go to about addressing your pain? Can't they solve the problem there, rather than run you some place else yet? That's the problem with specialists, they are SO centered on one thing, that they forget we are ONE UNIT! Don't get me wrong, I have tremendous respect for good Doctors, but they some can really run you. I try to stick to my GP and Rheum, but you really did need a digestive specialist and a Derm! I hope they can get you to a better place very soon!
I got the talk about going over the daily allowance of Dapro from my Rheumatologist! He told me I was better to take more morphine and less of the NSAIDS! Who would have expected that? Most Doctors treat you like a junkie if they know you take one on occasion! Hopefully your GP will be able to solve this for you!
Clapping and cheering in response to SK’s and DLT’s response!
DLT88 said:
I totally concur with you SK on doctors forgetting we are ONE UNIT. I even read by an MD that the reason ‘autoimmune diseases’ are divided up into Sjogrens, Hashimotos’, etc. is because doctors are divided up like that and there is one doc for our thyroid, one for our joints, etc. Otherwise she said the AI condition is systemic and the whole person needs to be treated as one unit. But if we have Hashimotos, we have to go to an endocrinologist; RA, a rheumatologist, Sjogrens, a gastroenterologist, a dermatologist, a cardiaologist, etc etc. A different doctor for every freakin’ part of us. It would be nice to have a good doctor that could handle the entire body and would care about the entire system and how it all works together caring as much about the liver as they would the kidneys, etc. Sorry for the rant.
SK said:
Hi Cassi,
So now who do you have to go to about addressing your pain? Can’t they solve the problem there, rather than run you some place else yet? That’s the problem with specialists, they are SO centered on one thing, that they forget we are ONE UNIT! Don’t get me wrong, I have tremendous respect for good Doctors, but they some can really run you. I try to stick to my GP and Rheum, but you really did need a digestive specialist and a Derm! I hope they can get you to a better place very soon!
I got the talk about going over the daily allowance of Dapro from my Rheumatologist! He told me I was better to take more morphine and less of the NSAIDS! Who would have expected that? Most Doctors treat you like a junkie if they know you take one on occasion! Hopefully your GP will be able to solve this for you!
Totally agree with all f the comments about need for multidisciplinary dpctors for AI disease so why don't we s a group not just talk to each other about is write aa a group to the medical supervisory bodies in our respective countries and tell them just that! Surely we can get together and write a joint communice that acn be sent to each countries medical board signed by the sjogrens support group.
TIME FOR ACTION self support is great and this site is very good at that but we all want effective treatments and a cure first and foremost and the only way this will happen this century is by lobbying.
The Sjogrens charities/foundations in UK and USA are pitiful and do damn all to publicise fund or lobby politicains and medics all thye do is chagre us a fee for being members!!!!!!!!!!!!!!!!!!
Comments please especially mods as you have the skills to work together and produce a good letter to send?
That's a great productive idea, Assybish. And, once we have a letter, I guess just listing all our names on it would be ok in lieu of actual signatures? Or how can we do that?
I hadn't seen this but interesting idea. The only other group I belong to is the Sjogren's Syndrome Foundation and I know they do quite a bit year round. It may be worth it to contact them and get some ideas of how to move forward.
No Interest - shame - have to do it myself I guess very disappointed I thought the idea of a forum was to get together for the common cause.
Sjogrens foundation don't have any impact and have achieved little in terms of research lobbying government or pharma/ and as I said they want a membership fee from SS sufferers .
Really am disappointed to get no response wonder if pople really do want to find a cure .
I have already contacted British Chinese and American research centres myself so guess I'm on my own.
I am so sorry assybish. I am not ignoring you. My elderly dog is going through a health crisis and I thought I was going to have to guide him to the Rainbow Bridge to meet his bossy mate Lucy. He has improved a bit but right now I am so gutted from the physical fatigue of his care and the emotional scare I can’t think my mY out of a bag.
The letter is a great idea. Give me time to recover and I will try to help.