Firstly sorry to everyone for not being around for a while. I have had an extremely past few months, where I completed my placement year at IBM, so am now officially a student again. I start my final in September, which I am really anxious about.
I had an appointment with my rheumatologist on the 22nd July, just before I went on holiday. Lets say this is doc1 i went to see. She has been my normal doctor since 2004, but recently (the past year and a half), I have also been seeing another doctor (say doc2) when doc1 was busy. I personally prefer Doc2, as she is more easy to talk to, and seems to listen and understand me more. Doc1 has always been quite rushed with me, and doest seem to want to 'really listen. My previous two appointments were with Doc2, and she really listened to me, and told me that I most likely have Sjogrens, talked to me about the condition etc. My last appointment with Doc2 was in April. This is when she told me I do have Sjogrens, and said I dont have to get blood tests done this year as they know what I have etc.... I was very happy to finally be told I have Sjogrens, as I was always previously told I was UCTD(Undifferientiated Connective Tissue Disease). I always hated this term, as it meant nothing to me and all I wanted to be was diagnosed. After being told this in April, I told my University about it, to see if I could get help for my final year which was due to start this Spetember. They said I could apply for Disability Student Allowance(DSA), which would provide me with financial help for certain equipment and other things that would be so useful for me. They told me to apply, and to get a letter from my doctor, and I should definately be able to get the help. I was very happy about this, and was keen to mention this at my appointment in July.
So I go to my appointment in July, and i was seen by Doc1. I hadnt seen her for over a year by this time. She read my file, and as I had previously mentioned about my sleeping being bad (it has been for over 4 years), she said that I should up my dosage of amitripyline. I was fine with this, and told her I was sleeping slightly early already at like 2am average. She was shocked by me sleeping at this time, and said that she thinks that because I sleep so late, that may be the reason for me feeling so bad and why I am suffering from the syptoms I am. I told her that could not just be the reason and that I still sleep in anyway, and that Im a student so cant be that shocking of a time. I could not believe she would say that sleeping at 2am could be the reason why I am suffering. Then the appointment continued. She said she wanted me to have blood tests, as she didnt know why I didnt have them in advance of the appointment. I told her that Doc2 said I wouldnt need them. She then said that I did need them. I thought, fair enough. She wrote out the blood forms, and I watched, as she wrote under my condition, that i was UCTD. I was shocked. I asked her why she was writing that. And she said because I am not diagnosed. I didnt know what to say, i was so choked up. I had told her that I was told I have Sjogrens, by Doc2, but she said that I am not, and that I am still UCTD, as I dont fit all the criteria, but I may have Sjogrens. I really didnt know what to say. I was just so confused that i left saying nothing else. This ofcourse was another quick rushed 5 minute appointment, with my next appointment not being scheduled till November. I kick myself now for not questioning more and asking for answers, but I was just really upset. I went back to my car and burst out crying. I couldnt believe that since April, I had been so happy that I had been diagnosed at last. And now im being classified as UCTD once again. What does this mean? Why are two doctors from the same hospital and same department on two different pages? Who is in the wrong? I am really confused and upset about this, and am not sure what to do or think.
Doc1 is down on my file as my offical rhematologist, and when I send in my DSA application, they will be writing to her to confirm my diagnosis and symptoms. Now I am very worried and scared my application will be declined. This will ruin my chances of getting the help I thought id be able to get for my final year, which is very important for me. What do you suggest I do? Shall I contact the hospital and ask to be treated by Doc2 only? What if they decline that? And Im so confused about what I have now. I have always been treated, by Doc2 the past year as if I have sjogrens. And my GP also treats me like I have sjogrens. I have all the symptoms, and really believed I was diagnosed, so how can I be UCTD? Im just really upset, and wanted to vent this frustration out. Has anyone had an experience like this? or advice on what I should do. How was it when you were diagnosed, where you just told or did you have official documents stating this?
Thanks alot for reading, i look forward to your responses.
Much Love,
Joyous
(also apologies for this entry being so long!!)
If there is one thing I have learned from this forum it is to stand up for yourself.... ask a lot of questions of your doctors ... and if they refuse to listen or take the time to answer your questions... get another one. I use to always leave and cry in my car. But thanks to the folks here on this forum I had enough courage to tell My GP just yesterday NO i don't want to wait and see. I want to see specialist for my thyroid. And I also told my Rheumy the same thing when she wanted to "wait and watch" the neurological symptoms. But 1 year ago I would have left and said OK. And would have cried and suffered.
If you have a choice of which Doctor you can be treated by and you prefer Doc 2 then see Doc 2. Or find a different one you are comfortable with and trust.
Hope you can get it all straightened out for school!
Sorry that you are having such a dilemma. I think the thing that really is making the difference with you is the fact that you won't qualify for any disability help. I guess I don't know what type of things you are referring to for help---money or walker, etc.????
Anyway, I am wondering if you can't just always see Doctor #2 and skip #1??? Also, I don't know if a doctor can really say for sure that you have sjogrens without any positive blood work or a lip biopsy. I am wondering if the school might require proof of the diagnosis with blood work etc. The doctor may feel that all your symptoms are indicative of sjogrens but where the line is drawn in the sand may be hard to differentiate when it comes to diagnosis.
It is not uncommon to have doctors tell patients that they do or most likely have sjogrens without all the tests. If the doc is treating the patient symptomatically with the idea that it is autoimmune there is no difference in treatment. At the same time, a doctor will most likely treat a patient with UDCTD with many of the same drugs.
It is really just a matter of what is written down. The one thing that can make a difference is when a person has documented autoimmune disease health insurance becomes more difficult to get plus is more expensive. I hope that you can make an appt with #2 soon and get things sorted out. Just remember that having a diagnosis doesn't always solve all our problems. It may be that you have sjogrens plus another autoimmune disease that has not been identified yet. The autoimmune issues are just plain confusing to all of us including the doctors.
THe one thing I would consider a positive is that both doctors are agreeing that something is wrong. That is a huge step in the diagnosis of autoimmune disease. Keep on keeping on and let us know what happens. Irish ;D
Hi Sweetheart
I'm so sorry you are struggling with this. I wonder if having a name for the condition is crucial? I know whan people fill in Disability Living Allowance in the UK, they are asked about the effect of their condition, as in, what they cannot do, what they need help with. I'm not sure that a specific label is needed, as they give the allowance to help with care or mobility needs for the person concerned. The way I see it, that is much better. As you know, some people on here, like myself, are fortunate in still being able to work, yet some of our lovely friends can't. So, it would not make sense for people like me to receive Disability (at the present time0, but makes perfect sense for the people who cannot work.
I wonder if you could sit down, make a list of the problems you are encountering, and then make a list of the aids/adaptations/funds that you need to 'enable' you. Then give that to the college. If they refuse to look at it, you could suggest they are discriminating against you as a person. Perhaps a student welfare officer could help you?
Just my two pennyworth!
Gentle hugs.
Kathyx
katy, You are so right about the "activities of daily living" that we need to hone in on for our disability. Much of the time the name of a disease doesn't mean as much as the symptoms we are enduring. We need to keep daily logs of what we can and cannot do as far as our own life is concerned.
Examples are: ability to toilet and bath ourselves, set up and take our own medications, feed ourselves, prepare meals, wash clothes, climb stairs, walk distances(mention feet you can walk without needing to stop or rest) ability to communicate with others, understand and follow doctors orders, etc. The list can go on and on and only we can know what we can and can't do. Just because we have a "label" or diagnosis does not guarantee disability. Many people with diagnosis of even MS can have very few symptoms. Irish ;D
thanks guys for your response. I tink i was just frustrated of being told one thing and then another. I was quite happy seeing the other doctor(doc2) as she was much more attentive to my feelings and what I had to say, and never rushed me. Then seeing this doctor again (doc1), I felt back to square one... being rushed... questioning my symptoms to be true or not and so on... I think what I'll do now is call up the department and ask if I can be seen by Doc2 only. And I will try and get a letter written by her for my DSA application as she seemed to know and understand and most importantly believe that I have my symptoms.
A DSA application are for students in the UK. I can request help for certain equipment at University, such as someone to either help me take notes in lectures or be provided with a mini word processor, for times when my hands get stiff and achy to write. Also equipment for my laptop that are ergonomically better for me, as I am taking a computer degree and am on computers constantly. And other varous things my University said would be helpful. I may also get help in terms of money for me to drive to Uni instead of take train, which in London during rush hour is absolute heck, and standing up for 1 hour and a half on a packed train is not very nice for my knees, heck my whole body really. I cant afford to do this now as petrol is so expensive, and i would need to pay congestion charge and parking everyday.....well thats the sort of things I could get to make my life easier, and I would be so happy to get this help if I could. If not its not the end of the world, but it would be nice to receive help where possible.
I guess i've just always had a hard time getting people to understand wats wrong with me, and it has been so much easier just saying its because of my condition Sjogrens Syndrome. I have come to accept my condition and my symptoms much more than I previously did, and am happy that atleast I am getting some medication that I need. I guess I need to be more forward in appointments and will try to get in a habit of documenting my symptoms on a daily basis. Thanks for your thoughts and advice all.
Joyous x