Confused a bit

[Emfrenette]

Hi guys . I've been in the dark about the diagnosis I was given beginning of this year for limited scleroderma and reynaud. I have gone to see the rheumy twice so far and next week I have an appointment and not too sure what it will be for . My family doctor seems to not be of any help although shes the one that finally sent me in for some proper test to find out I had all this . Now I am dealing with all different symptoms and forget to mention it every appointment I feel I need to update my doctor for a million things. At work I have coworkers saying it's no big deal but I can fall asleep standing and walking to work from the bus stop it's been getting ridiculous. My legs wont let me run anymore it's almost like I have bricks on my feet and I'm running in one place getting nowhere . I did mention it and doc told me i could just be mentally thinking about too much and simply could be when adrenaline is going through my body it's not being transferred properly to my legs ? Wich confuses me a bit what she ment by this. Also my shoulder and neck always seem to be bothering me . Like it's out of place and it pinches and hurts when I do the slightest movements . My migraines are almost always a part of my life I'm only on propanolol and I dont find its helped with my reynauds much at all . People look at my fingers and find it funny I tell them I need to warm up or change job duties at work if under too much stress .. they dont seem to get it and they give me another stressful duty to deal with . I'm only working about 20-30 hours /4 days a week and I'm exhausted! I've been getting eye blurrs like a sort of fog in my eye . And a cough I've had for over a month now that once in a while I cannot even talk because I'm all chocked up . Could it be that I have more than just Limited scleroderma/reynauds ? Anybody deal with issues like this.. I'm not even 100% sure if the diagnosis is what it is . First appointment the rheumy tells.me lupus or scleroderma then second appointment tells he doesn't see physical appearances or lupus so he "thinks" it's more likely sounding like limited scleroderma. Makes me wonder ! Any help would be great

[fairy56]

Hi, I have scleroderma and secondary raynauds and other associated conditions. I make a note of any thing I notice so when I see my rheumy I can tell them, otherwise I forget them. The appt you have gives you the opportunity to discuss anything you need answers to. Can I ask have you had any medication suggested yet? This may be why you have the appt. All the symptoms you have described will ring a bell with most of us on this site, which I hasten to add is a wonderful place to talk with other people that live with scleroderma and sec raynauds. take care xx

[Emfrenette in reply to fairy56]

Thanks for your reply no I have only been on trial with nefedipine and I'm a previous migraine sufferer so that med made it worst then my family doctor said to try this propanolol to try and target headache&reynaud symptoms and my headaches were a bit better but when I get them they're bad . And feels like a needle in my eye sometimes. I'm not sure if the meds they have me kn now is causing some of the side effects .. but I have mentioned them to my doctor . Just not the rheumy yet . I did go for blood work the other day that I demand to get done before I do see the rheumy next week because I feel the inflammation markers have changed . Last tien they said no inflammation was seen and the time before that the markers were very high .. so comes and goes , is that considered flare ups or just positive /neg results? I'm still concerned that there's some else I have and would take me off work. I've already diminished my hours . And not sure what else I can do to be more relaxed and rested .

[fairy56 in reply to Emfrenette]

Hello again, is your rheumatologist part of a scleroderma specialist team, although I am under the care of my local hospital I am also under the care of Chapel Allerton hospital in Leeds. Perhaps its worth asking your rheumy if you can be referred to a hospital where they have a scleroderma team. I am on numerous medications, including Amlodipine and Sildenfil for my my Raynauds, and whether its them I have found I suffer less with migraines, whereas before I was diagnosed with Ssc and R"nauds I suffered frequent horrendous Migraines. We have to remember that we live with a rare condition, we all present slightly different symptoms at different times, and that many in the medical profession have never heard of it, so I have decided that at every opportunity, whether it be a "normal" GP appt or a dentist appt or podiatrist etc I explain as much about the condition as I can and point them in the direction of this site.

[Hidden in reply to Emfrenette]

GPs can’t prescribe the medications rheumatologists can. My GPs know their limitations and don’t get involved with the scleroderma as they realise it’s a rare and specialist matter.

[Hidden]

I’d show your rheumatologist this post!

[Irene55]

Before you go to the doctor make sure that you write down all your symptoms. Everyone forgets something in front of the doctor. I have Scleroderma with Polymiositis overlap and don't have the typical facial symptoms so a doctor couldn't tell by looking at my face to say I have it.

If the doctor cannot see symptoms you could also have an overlap. They can see what you have from your blood. One advantage of an overlap illness is that you get a milder form of each. That is what I have discovered.

Don't forget to write a list and maybe try and get an appointment with Professor Denton in the Royal Free hospital. I saw him and he went through everything I had written on my list. When I went to check it he had covered everything without me first checking. He is one of the best in the world. Keep asking till you get an appointment.

Good luck and hope you find an answer soon.

[-missymoo in reply to Irene55]

I’m seeing Professor Denton in September 👏😃

[-missymoo]

Hi there, firstly, I’m sorry you’re having to go through this.

I absolutely agree with others, you need to be referred to a ‘specialist’. I have seen numerous Rheumatologists over the years, but saw a Rheumatologist who specialises in my condition, Limited Cutaneous Systemic Sclerosis and wow, what a difference. I had so many unanswered questions until yesterday when I saw him. Please ask for a referral to your nearest Specialist in Scleroderma.

Good luck x

[Emfrenette]

I dont even think here we even have scleroderma specialist and I'm not ven 100% he was right about the diagnosis I mean I have close enough symptoms to everyone else . But if its something else bow long out of the loop will I be .. specialist around here are not very good it seems like

[Debbiedoughnut]

Hi Emfrenette, I also have your conditions and know just how confused you must feel. To start with I could not take in what I was being told and hadn't even heard of my illness let alone understood what it meant. Slowly it gets better,at first it is all hospitals and tests but as they sort you out things slowly get better. take heart and remember even if you don't know them yet you have many friends that are going to understand your problems.x

[Debbiedoughnut]

Hi Emfrenette, The whole business of scleroderma is confusing but don't be afraid to ask. Sadly not enough people know about the illness but with healthunlocked you don't have to feel alone. I have felt so much better since joining and you can ask me anything. I have scleroderma and raynauds and am learning all the time. xx