Long road.

[lisa___s]

I feel like I’m on a long road to getting answers.

I finally saw my rheumatologist yesterday, instead of sticking to my list I broke. It was so hot in there and I became a blubbering mess.

I think I told him everything but not in the way I’d planned.

He said he wants me to go to my gp with every new symptom so my gp can email my rheumatologist. He said let’s work together as a team (this game me hope)

He said I had to have liver and Kidney function test yesterday and according to the results we might be a step closer to a Lupus diagnosis, but he’s also thing it might be M.E?

I haven’t a clue about M.E

He wants me to up my dosage of amytriptaline and consider taking hydroxy...(don’t know how to spell it).

I think I’d got my hopes up for a diagnosis which was silly cause now I feel lost.

[CarolMcl]

Hi Lisa.maybe not the result you were hoping for but really good that your rheumatologist wants to work with your GP as a team. It can be very hard to get a definitive diagnosis as autoimmune symptoms can overlap and can also present as something else. I was "diagnosed " with ME in 1989 and was off work for nearly a year, at different times I also had various other symptoms which doctors related to various other things. I spoke to my rheumatologist last week about it and also gave him a list dating back to 1989 and he agreed that I could've been presenting with symptoms of lupus for many years now. Unfortunately it took a long while to peace all jigsaw together to come to a diagnosis. The good thing now is that much more is recognised about autoimmune diseases and your rheumatologist does seem to be proactive. Give the hydroxy a go, I certainly feel that it made a difference to me. Try not to feel lost as your moving in a positive direction. Take care x

[lisa___s in reply to CarolMcl]

Thank you Carol, what you’ve said makes a lot of sense. Maybe next time I’ll had my list over to him to make sense of rather than me reading it out.

Like you say I am on the right road and everything going on with me is being noted so that’s got to be a good thing xx

[CarolMcl in reply to lisa___s]

It certainly is a good thing. I know from experience that it's very easy to focus on the negative aspects and your mood maybe very low at times but try to keep positive because as you say, you're on the right road now and your concerns are bring taken seriously x

[lisa___s in reply to CarolMcl]

I do have a bad habit for focusing on the negative lol x

[CarolMcl in reply to lisa___s]

It's natural unfortunately but you will get ahead of it 😊 x

[KayHimm in reply to CarolMcl]

Carol — I know this may not be easy but right now it is more important for you to feel comfortable that the rheumatologist has clearly given you a diagnosis of systemic autoimmune disease. That is actually the biggest step. When people have general symptoms but only an isolated positive ANA, that is not an indication (at least yet) of auto-immunity. You have a high positive ANA (very significant to a rheumatologist - mine is low positive which points away from lupus). I saw in your past you have mouth ulcers. These are a very specific symptom. Hope you told your doctor about them. I do not think any rheumatologist would put you on plaquenil without enough evidence of an early auto-immune disease. I have had undifferentiated connective tissue disease for thirty-five years. Like you, I have evidence of an autoimmune disease but do not fulfill criteria for any one. This is actually a good thing. In fact, you do have a diagnosis. You have a systemic autoimmune disease, are being treated to prevent organ damage and may or not evolve into a specific one. I hope you can make adjustments in your life to minimize flares. You must take good care of yourself even without a specific diagnosis!

[CarolMcl in reply to KayHimm]

Hi KayHimm

The post was from Lisa_S 😊

[Wendy39]

Hello. I haven't been around as much as I would have liked recently and I'm not sure if our paths have crossed before or but please don't despair. I know it is easier said than done but the fact that you have a Rheumy who is so willing to listen and work as a team, is heaven, believe me. I was wrongly diagnosed with SCLE in 2013 and I knew this wasn't right, so I kept pushing to see a lupus specialist etc. I ended up paying privately for a 2nd opinion in April last year and I was right, my diagnosis was wrong. I have SLE not SCLE. My local care is still terrible, well non existent really and I am travelling to London for the 3rd time in June. I would love a good, committed, understanding local rheumy to take over and save me the long trips and expense of going to London. Unfortunately lupus can take an average of 6.4 years I think, from memory, it is to be diagnosed. Looking back my lupus was kicked off by the birth of my daughter and so 9 years from then to get the correct diagnosis. I know that's no consolation to you right now but you have a rheumy on your side and it's a huge step in the right direction. Lupus is known as the great mimicker and has many symptoms that overlap with other auto immune illnesses, so it can take a while to get all the right tests and bloods done etc. Give this doctor a chance. Amd take his advice, go to your GP, get your symptoms recorded. When I was first seen I was asked questions like, have you had any hair loss, no I said. Then the following week I blocked the shower whilst washing my hair - in one hair wash the drain was completely blocked and bath filing up. Yes, i did have hair loss. I was asked if I had any swelling, no I said. After a few months of hydroxy I noticed that my ankle strap on my sandals needed to be 3 holes tighter - my ankles had been swollen but they had been that way for so long I hadn't noticed. My bracelet fitted me again - my wrists had been too swollen for it to fit. So keep a daily diary of symptoms and naps and mood etc and take this to your appointments, as all of it is relevant. The early days are a roller coaster ride, but you will get through. We all have good days and bad and at least here, we all understand. We're all in the same boat. Best wishes. Wendy x

[whisperit]

We've all done it, lisa_s! There's so much riding on each appointment, it's no wonder that the pressure gets to us.

And it is very frustrating when you have a chronic condition with such

variable and elusive symptoms - not like going into the GP and them

saying, "Oh yes, you've got Lurgy - take these tablets and you'll

be better in a month". The important thing is that you still have a plan to work with. The test results will be helpful, you can continue monitoring your symptoms and discussing treatment options with your medics. And you can post here too if you like x