Please tell me that I am not crazy!!! No help from doctors or family!

Allergies, blood and immune system
1

Hello. I am new to the Sjogren's forum but not to the site. As my title suggest I am going through some really hard times right now. Just a little back ground.. I am a 23 year old female who has been experiencing some declining health problems for a couple of years now. I am having a hard time getting a diagnosis or any help for that matter. I have been to several specialist and thehe only person who seems to believe me is my GI doctor. But there isn't much he can do alone. I will give you below a brief discription of my symptoms and my lab test and hopefully somebody here has experienced the same thing and you tell me I am not alone.

Symptoms:

Extreme fatique, generalized weakness-sometimes severe, rash on hands and forearms- comes and goes, hair loss/thinning, muscle pain/wide spread body pain, diarrhea-comes and goes, nose ulcers, constantly feeling like I have the flu, most days when I try to get up and shower/get ready it makes me so weak and sick that I have to rest, chest pain, shortness of breath, increased urination, swelling of feet after working, confusion, memory loss.

*Most days I just feel as if I possibly can not do anything. I am so weak and tired that it is physically hard to get out of bed.

Lab Test:

Postive ANA in 2013- Thats when it all started. At the time the symptoms were not bad though. Just fatique and stomach issues. The ANA was never addressed and I was diagnosed with Irritable Bowel Synrome.

Positive ANA in Jan 2016- In 2015 things started to get bad for me. I started getting hit with all the symptoms above. I had to go down to part time at work because I couldn't fuction working full time. So I changed primary doctor's since he was getting no where with a diagnosis and that is when she sent me for another ANA thinking I may have Lupus.

Tested postive for SSB but SSA negative- After testing positive for the ANA and SSB I went to a Rheumatologist on May 12. It was the worst experience of my life. The doctor told me when I first came in to not talk. He said to answer all his questions with a yes or no. He even hushed me. So with that being said he never even got a full history of my symptoms.

Vitamin B12 Deficiency Anemia and Vitamin D is low.

Elevated Liver Enzymes. In May we discovered that my AST and ALT were elevated. Which is something new. For the past 3 years we reviewed bloodwork and they have always stayed in the range of AST-13 and ALT-15. Now they are AST- 42 and ALT- 70. I am not overweight, eat heatlhy, don't take and meds, and do not drink. Went to the GI doctor and he ran more bloodwork to confirm they were elevated, CT Scan was normal, and HIDA scan was normal. He doesn't know where to go from here because he thinks it has something to do with the Autoimmune stuff but I don't have a diagnosis.

So with all of that being said... The Rheumatologist wanted me to follow up with my Primary. Didn't even schedule me back to go over the reports or go over a plan of care of anything. So my Nurse Practioner is left handling this (which I know she isn't familar with this stuff). His reports just said that it basically could be Sjogren's or Lupus primarly with Fibromyalgia too. But I did not get a diagnosis or even a plan of care. There was a mention of starting Cymbalta and Plaquenil but no information on it. And now basically I am left without a diagnosis and my Primary doctor pulled the "depression" speech. I am fully aware of mental health issues and do not think less of them at all. But she asked me if I was depressed? Like is something bothering me in my personal life that could be making me sick. I tried to explain that I have a wonderfull life. The only thing making me upset is how this has changed my life and the fact that I am getting no answers. Its not the other way around. I just feel like it is pointless to pursue the road to getting answers anymore.

I am just having a hard understanding how they can look at lab test saying postive ANA, positive SSB, elevated liver enzymes, and etc. and ask me if I am depressed and tell me I should get a coloring book.

Has anybody else went through this? I really need some advice and to hear from some people out there that can relate.

 

2

Hi Ashley no you are not crazy I think it's because this syndrome is difficult to get the diagnosis as it's linked to so many different things I am new myself and see rheumatologist next week I have encountered negative blood test already so i am going armed with information I know how you must be feeling with all your test  and i can see how frustrated you are I would go back to your GP and ask for a referral to a different rheumatologist saying you want a second opinion or I would try ringing around different GP in your area  to see if any of them have dealings with SS and changed surgery it's annoying you have to think of doing this your not alone I realised that after joining this site it's been the best thing I have done have you joined the British Sjögren's website they have a help line  0121 478 1133 if your in the uk you can ring them may be they'll able to direct you in another directions chat to your family sit down and tell them how you really feeling and don't be afraid to say you need help it's hard when you have been idependant I have cut down work as I have been struggling to sorry I can't give you any more advice I am knew myself this is what I am going to do if I get know where good luck x

3

Hi Ashley, sounds awful that you have so many health issues and the medics pull the depression card!!

I feel that you must ask for a second opinion and look up a consultant in SS on the web or go into the British SS website as Jacqueline suggests.

Ask your GP to be referred as soon as posdible as you are not receiving good enough care, attention or treatment from your rheumatologist who sounds awful.  You could complain about his attitude to your local health authority who employ him as he sounds so rude and should treat every patient with respect.  

But getting someone more knowledgable is a must. I appreciate that it takes time and energy but try and be strong and hopefully you will get the diagnoses and treatment you need.  

Good luck and feed back any positive responce or diagnoses. 

Maureen . 

4

Hi Ashley - you poor thing! And no you are not crazy. I know you're hoping for answers from people who have the same puzzling symptoms and that can point you in the right direction. I am new to Sjogren's (but not to chronic illness as I have had interstitial cystitis for 8 years) so cannot help much on that score except that I very recently went to a medical conference on Sjogren's (I live in France) and during question time one lady told the speaker that a couple of years ago she was so tired that she literally could not get out of bed to pee in the mornings, she was a walking zombie and could not function and that she had given up gluten a year later and her life was transformed. I know gluten-free seems to be the remedy for everything these days but one thing we ALL seem to have is GI trouble and I think we can help ourselves a lot with diet. I personally am trying to heal my gut and help my body to heal and be healthier by following the FODMAP diet and cutting out wheat & dairy. I have been doing this for 4 months and am really starting to see a marked improvement in my GI symptoms (but not really the rest - yet...). When I first got my IC symptoms I too thought I was going crazy, there was no remission from constant

urethral pain / burning and urgency. It literally was enough to send one quite crazy and the psychotherapist I was seeing at the time suggetsed that it was my body's way of punishing me cos I felt guilty about I can't even remember what now... so just to say that when people can't find an answer, well they try to find an explanation of some sort. Doctors hate to be confronted with any gaps in their knowledge. And it is very hard for family and friends to put themselves in our shoes. Over the years I have that it is best to see doctors with an interest in AI illness or the particular pathology you think you might have. Doctors that write articles, attend conferences or moderate patient forums on that illness tend to be a good bet if you can get to see them. Jacqueline's suggestion is very good - try and get a referral to another rheumatologist. It is also very important to have a good GP to support you. Keep going until you find some more supportive medical care. I know it is exhausting having not only to fight one's symptoms on a daily basis but also to have to fight to be heard and taken seriously by doctors. My first rheumy appointment is on Monday... I'm dreading it . Good luck.

5

omg get rid of him....horible DR... mINEDOES NOT CARE  JUST TAKE ANTI DEPRESSQNTS..tHATS ALL HE SAYS..

6

Hi Ashley,

I am sorry your are having such a tough time. I want you to ask yourself this question...Why did this doctor tell me to hush? I know when I see a doctor I am sometimes  so eager to explain my problem I don't give him the opportunity to come to his own conclusions. I am talking while he is trying to figure out my labs and decide what to do...So I have learned to write down the questions that I must have answered before I leave. I literally go down the list one by one. The rest I leave to him. Remember he is trying to solve a puzzle. Slow down...consider each question, only answer that question. Then ask your own questions... Ask him for a plan.

Based on lab results what are my options for treatment? Do I need more or different tests? Tell them how you feel, if you don;t think you are depressed tell them. Tell them it may seem like depression because this whole ordeal of trying to get diagnosed and feel better has taken alot out of you. Talk slowly and deliberately they will be less likely to dismiss you. It is probably harder for them to listen to you because you are young. So gain their respect by listening to what they are saying and then responding appropriately. Make sure you understand what they are saying. If you don't, ask! Please understand my advice comes from years of experience, and all the mistakes I have made myself! You seem like you are very bright. I think if you look at your doctor visits differently you will have more success being heard. Good luck,

Sally

7

HE HAS NOT EVEN TESTED ME...I GOT MY BLOOD TESTSIN AUSTARALIA WHEN I LIVEDTERE 8 MONTHS AND DID NOT EVEN TESTAYTHNG. JUST ANTIDEPRESSSANT....I KNOW THE MEDS ARE HARD AND IM HIGH ANXIETY EVEN WITH PREDNISONE...I TAKE VLIUM WHICHCUT DOWN ONLYFOR SLEEP... THIS ILNESS IS SCARY AND I NEVER HEARD SO MANY HORRIBLE STORYS ON THE INTEERNTET WITH SJROGENS NO WONDER I HAVE ANXIETY...........THE DR USES REVRESPYSCHOLOGY AND BAFFLES ME,, YOU JADE A GOOD POINT BYTHE WWAY......SO I WILL TRY ANEW DR, SOON....DRS HERE IN LA  ARE VERY BUSYNO AND CANT GIVE YOU TIME......ALSO TO GETTHE RIGHT ONE IS THE KEY......SHOULD WE IMMUNOLOGIST OR REHEMATOLOGIST???????IVE SEEN GASTRO ENT INTERNEST AND NEXT NEUROLOGIST .  

8

I live in the Middle East and when I went to a dermatologist accompanied  by hubby,( i had been diagnosed with GERD, Barretts, lung issues, infected lymph glands which didnt respond to antibiotics and found it was useful for me  to have someone with me in case I 4got to mention symptons or to recap the the whole consultation later.)  the man told me to wait for my turn to speak while he and hubby had a conversation about MY diagnosis (also had Pityriasis Roscea a couple of months before diagnosed with SS, hence the derm visit). So 'hushing' is very annoying and humiliating but doubly so, as I am old