Hi all not sure if this is the right place to post but don't really know where else to turn, sorry if it's wrong.
As some of you may know from my previous posts I have been undergoing tests for the last 2 years now to figure out what's going on currently only diagnosed with vitamin d deficiency, functional neurological disorder, fibromyalgia and colloid cyst in the middle of my brain.
I've been struggling with numerous symptoms since having my 2nd child such as pins and needles, joint pain, butterfly type rash on face, migraines, petichae, brain fog, canker ulcers, spasms, twitches just to name a few. During all this I have seen numerous specialists, gasteonologist believes fibro is misdiagnoses because the only thing showing up in bloods during all this time was liver enzymes extremely high consistently nothing resolving them and nothing showing on liver biopsy. Fast forward to this year where I seen a new rheumatologist a couple of weeks ago she sends me for bloods and urine test stating that if these come back normal she will trial me on steroids to see if it resolves liver issues and then be able to confirm its autoimmune based on that whilst still trying to figure out what it is. Then I get 3 letters this week one to state there are red and white blood cells in my urine with no infection shown, the second states a nuclear bone scan appointment and the third a new appointment with previous rheumatologist which I found weird due to me seeing a rheumatologist 2 weeks ago so I rang them to ask why I was seeing them again so soon and it turns out now that something abnormal has shown on my bloods.
Now granted this was something I wanted to be able to have a reason for all my symptoms however my anxiety and stress is through the roof whilst waiting for this appointment to confirm exactly what is now going on, sorry for the long post/rant thank you if you got this far I'm not quite sure how to feel or what I'm looking for it's just a lot. Thanks again 💕
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Haylz2109
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hope it’s not too long for your appointment to find out what’s going on. There’s nothing worse than having to wait for the results. 🤞they are finally getting close to a diagnosis and treatment.
Thank you, its the 14th of February I think they want me to have the bone scan first which is the 7th of February. Just so anxious with this wait, its the fastest I've ever had responses or letters off them so makes me worry. Thank you for your response 💕
Thank you, it is very stressful I've been stressed the whole 2 years in truth. Think it just feels more real now whereas all the other times it's come back normal I was expecting the same this time. 💕
Sorry to hear you are having such a difficult time. In regards to the vitamin d dificiency, are you taking a vit d3 supplement and/or consuming oily fish like wild caught salmon regularly? The reason I ask is vit d dificiency is linked to autoimmune diseases. Also, I know it's impossible not to stress over something like this, but there are good techniques to try to manage it. The reason I say this is that stress can really exasperate symptoms of autoimmunity. Diaphragmatic/belly breathing is a fantastic way to reduce stress. Don't have to do it for a long time - even a couple of mins in morning then again in evening time will make a huge difference.If you have the means I would highly recommend going to see a naturopathic doctor who has a keen interest in autoimmune disease. Also, the book "autoimmune solution" by Dr Amy Myers is a good place to start.
P. S I'm not saying to not go to your rheumatologist appointment.
Hope you get some answers and begin to feel better soon.
Thank you, yes I have fish like salmon or tuna at least once a week sometimes more often. I'm now on a vitamin d supplement given by my Dr but didn't take vitamins before because I wasn't sure what was best and worried it would affect the results. Thanks yeah I know usually if I stress things get a lot worse so I'm really trying not too its just so hard 😔
Thank you I will definitely have a look into that aswell I appreciate that information.💕
Try not to worry too much which I know is hard. Stress can make you feel worse. It's such a dilemma, you want answers but are afraid when they find some. Just know you're moving forward, they have obviously caught something, hopefully early. You will get medication hopefully and regular monitoring rather than nothing at all which you have been getting. Take someone with you if you can to the Rheumatology appointment to ease the nerves and they can take in what you may not. Ask Rheumatology and hopefully they can accommodate that, I'm not sure on rules of taking someone else with you to hospitals yet but I hope you can if you want to. After 14th Feb you will know and you can start learning about and dealing with what you have. In the meantime take care of yourself try and rest even if you can't sleep well. Sending you hugs 🤗xxx
Thank you for that 🥰 I am trying not to stress but it's so hard! Yes it's such a catch 22 I think because things came back normal for so long now that its changed its knocked me for 6 even though I wanted something to show to be able to feel a bit better than I currently have for the last 2 years but I'm just scared now to see what it all means! Yes I'm going to take my partner in because I know I won't take everything in and not sure how I'm going to feel. Thank you I really appreciate that. 💕
Hi Haylz, so sorry I don’t have the answers but I just wanted to say good luck for your appointments. You have been suffering for a long time and hopefully the tests and appointments will give you answers and then effective treatment. Please keep us updated xx
Waiting for a diagnosis is tough and worrying. Nothing can change that. But... Take comfort from the fact that you're clearly getting a lot of attention and appear to be in good hands.
It sounds like you've got a good rheumy there Haylz 🤗Best of luck with your upcoming appt. Write down any questions you may have n leave spaces for answers that u might get in return..so make sure you've got pen n paper with you. Taking your partner is great too..it's good to have support at appts.I'm sure that lots of us can relate to how you're feeling right now..we understand what you're going through. When u find yourself getting overwhelmed by all your muddled thoughts..just stop what you're doing n take 10 deep breaths..in through the nose n exhale through the mouth like you were blowing through a straw. It will help u to get through these next couple of weeks.
Keep posting n we'll help you through..you're not alone..you're in the right place n there's no such thing as a stupid question with autoimmune stuff!! 💜🌈😽😽Xx
Thank you, because I don't know what the results have shown I'm not sure what questions I'll really have until I know what the issue is. Will definitely have my partner with me and hopefully he will ask anything I miss at the time. Thank you I am definitely trying my best to keep my mind occupied and de stress but as you probably know that's easier said than done. Thank you i really appreciate that 💕
Hi ---- Sorry to hear you are nervous about the results of your tests etc. I know this may not be for everyone but we use Patient Access (in UK) which you can ask your GP surgery to arrange for you. You can then see your own test results before your appointment then you can have your questions ready in advance. Also there are so many results included in a blood test that it becomes difficult to follow, (and even more difficult to remember afterwards), exactly what your doctor or Rheumy are talking about, especially when they are looking at a screen that you cannot see.
If you do not or cannot get access to Patient Access then you can ask for a paper copy of your results after -all they are your results not theirs.
It is common and routine for Drs to recall you when test results come through, so please do not get yourself too worried ---it is often just something they have spotted that needs a bit more investigation before they can make a diagnosis.
Thank you, I didn't know that wss available so will definitely look into that. Not sure if they will have the access because it's from the rheumatologist but worth a go. I did try speaking with the rheumatologists secretary again but they said they could not tell me anything over the phone and had to wait for the appointment. Yes I've had my paper copies a few times but usually takes a few weeks to come through so would probably have the appointment sooner. Thank you I am trying not too it's just easier said than done and I don't know how to feel been as this is the closest I've got to a diagnosis in the 2 years I've been investigated. Thank you I appreciate it 💕
Any test results should be copied to your GP even if they are requested by a hospital consultant. If the surgery do not have them then just ask for them to be forwarded to your GP.
Just an update for you all i managed to speak to my GP doctors to try and relieve some anxiety and they told me my liver enzymes are still really high and that my igg has shown up as raised. So unfortunately it seems once again I'm back to the start when it comes to knowing what is actually affecting me but thankfully the rheumatologist I have has a plan in place so guess ill just have to see what she says when I see her on the 14th. Just feel so disheartened as I really hoped that this would give me some answers this time 😔
Good luck with your follow up appointment with the rheumatologist. You've had lots of good advice here already. Hopefully the rheumatologist can now also rule out infections like hepatitis and other autoimmune conditions, such as vasculitis, which could possibly play a role in raised liver enzymes and raised IgG. Keep us all posted and try not to get too disheartened. Many of us here have struggled a fair while before we've finally got a proper diagnosis. 🍀
Thank you I appreciate that. Had another phone call today and they want a lip biopsy taken urgently apparently the rheumatologist is looking for sicca which I think is another name for sjordens syndrome just another waiting game and felt disheartened the other day with my normal gp saying bloods were fine, hoping the rheumatologist can see more though 🤞🏻 thanks again! 💕
Don't feel disheartened. That's great they are proceeding to a lip biopsy in the face of negative bloods - they haven't done that with me despite the sicca (dry) symptoms I have. It's really important to establish whether Sjorgrens is a part of the picture in order to tailor the meds.Good luck 🍀🍀
Thank you i really appreciate that. I'm grateful that this new rheumatologist is doing all these extra tests i can't fault her I just think I'm more anxious because it's all being chucked at me at once but fingers crossed it works out. If I'm correct it could be sicca without lupus so we will see what this all brings 😬 thank you for the reassurance too 💕
Hi Haylz, the waiting is horrible. I can relate to the seemingly endless roladex of tests and appointments. I’m in the middle of a wait right now, and it really tests those resiliences muscles, doesn’t it? I’m constantly preoccupied and on the verge of tears…so I understand.
One thing that’s helping me right now is focusing (or trying to ☺️) on what I can control in the here-and-now. I can’t control the doctors or the waiting times, but I can choose to spend today doing the things I love, with the people I love. Plus chocolate! I know it’s hard when the worst-case scenarios keep replaying themselves in the brain, but see if you can do nice things for yourself and get a little mental respite, even if only for a few moments.
Waiting times can be stressful and depressing—but they’re not forever. Hope yours turns out to be worth it. 🌻
It's the worst isn't it ? I think before I was able to deal with it better because nothing was showing on bloods and usually would be a few months etc between tests or appointments but now it's like everything is happening so quickly since the appointment with the new rheumatologist which I'm not at all mad about it just a lot and I'm feeling absolutely rubbish so that probably doesn't help!
Yes oh my gosh I only have to speak about something that's stressing me and I'm either on the verge of tears or do cry! I'm trying my hardest to keep focused on other things so my kids etc and just trying to do what I'm capable of currently. Yes I agree in the control what you can method because there is so much out of your control it's not worth the stress and symptoms as a result. Thank you I really appreciate that, sorry to hear you're in the same boat. Fingers crossed for some answers soon for both of us 🤞🏻💕
Yes, having a lot at once can be overwhelming! I totally understand. You’re doing so well. It probably doesn’t feel that way, but you have a lot going on right now. Sometimes just getting through the day feels like the accomplishment of a lifetime. Fingers crossed indeed 🤞🤞
Very overwhelming but clearly needs to be done! Thank you I appreciate that. I just feel so rubbish as I have two little ones and feel like I'm wasting the day because half of the time I can't get up off the sofa to enjoy with them due to the pain 😔 it just gets really hard sometimes. Even eating these days feels like an accomplishment which it shouldn't be because its a necessity. Thank you though sorry for all the moans. 🤞🏻 for a breakthrough now. 💕
Cut yourself some slack—some days, just BREATHING is an accomplishment! The voice of Guilt will often tell us we’re falling short, or should be doing something more or better than what we are. But Guilt often doesn’t see the whole picture: how we are limited, how we don’t have the mobility or resources others have, how we have already run out of spoons for the day. Cut yourself the kind of slack you would gladly cut for a friend who was in your shoes. 🌈🌈
Thank you so much! 💕 it's so easy to say not to feel the guilt etc but we are so hard on ourselves and we would not give ourselves the grace we give to others. I am trying though its just been a hard couple of years and the last few weeks seems like everything is just much more difficult 😔 fingers crossed it can only get better though 🙏🏻
Thank you I really appreciate your support. Had my nuclear/isotope bone scan done and now got the rheumatologist again tomorrow so we will see what this brings 😬💕
Thank you, still no further forward 😔 currently started on immediate steroid trial to see if resolves liver enzymes and symptoms which if it does would confirm it being autoimmune and then they would still be trying to figure it all out. So left once again with more questions than answers and now on steroids whilst waiting for lip biopsy and further bloods. 😬
So frustrating! I hope the steroids provide you with some relief, if not answers. Hope the wait for results is not too long. It feels like a rolodex of appointments and tests sometimes, doesn’t it? Let us know how you go.
Oh, Haylz, you are really going through a diagnostic nightmare. These autoimmune diseases are often hard to diagnose but you are giving those specialists a run for their money.
They clearly are hoping the steroids are effective. Take careful notes about any other symptoms that improve. Maybe that lip biopsy will give more information.
We are all here for you and hoping for answers and better health.
Thank you, it definitely feels like I'm making them work for their money huh! Just hoping something comes of it all now ! Thank you I will be carefully watching if anything changes whilst on these steroids and fingers crossed it sorts out my liver enzymes 🤞🏻 thank you I really appreciate that 💕
Hi All sorry I don't have much of an update from last time, I've had my lip biopsy done, more bloods and urine tests, waiting now on seeing the rheumatologist to see what if anything has shown on these. I'm currently really struggling however with symptoms such as fatigue, migraines, ulcers, rash on face, ear infection, body pain and spasms so I rang my rheumatologist's secretary to find out if there were any cancellations prior to my appointment and the secretary gave me a number for rheumatology advice line ? I've never heard of this before and I've been under rheumatology for 2 years so far just wondering if anyone else has been made aware of them. I have rung them but a long waiting list for a reply off them currently, sorry for rambling just currently really struggling and thought you guy's might understand. Thanks again for reading 💕
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