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Discussion Starter #1
So I have drawn up a list to take to the Rheumi on my first appt on Mon. Trouble is, I think it is too long and perhaps could do with trimming as I seem to have been unlucky. What do you folk think of this list? Is there anything you would leave out? The emboldened stuff is what I am currently experiencing.......or maybe I am just a hypochondriac. I have had it with the pain and fatigue that can't seem to be proved and so doesn't look like it can be affirmed. Is life meant to be this hard. Sometimes I go to bed and don't really care if I don't wake up in the morning.

When I had post natal depression, my old GP told me that there couldn't possibly be anything wrong, and I was pulling my family into my delusions about my ill health........................turned out I had retained products and had to have an emergency D&C 5 months after my baby was born.

I'm really worried that I'm going to end up with another crap doctor who is going to tell me this is all in my head. I don't think I can face another battle.

Anyhow, sorry to go on. I'm a bit fed up and abit worried bout Mon.

I don't know what I expect from you. I just don't see how it is possible to have all this going on seperately, rather than come under the umbrella of something else like Lupus or Fibromyalgia....can anyone be that unlucky?

Your thoughts would be appreciated. Should i take the attached list with me on Mon, or chuck it on the fire as an afternoon of maudling that will acheive no good? Sorry to go on


Aged 0 – 10 Claustrophobia (1972),Allergy to Sunlight diagnosed by Dr (He called it an Actinic Rash) Always presents raised red patches on sun exposed areas and a red ‘glow’ on cheeks (1976/77), Chronic Blepharitis (1976 - 1981), Chronic Chilblains (1976 - 1981), Chronic Mouth Ulcers (1976 - 1981), Thrush (1978ish?), Recurrent Tonsilllitis – always leading to Sepsis.(1976 – 1981), Frequent Nosebleeds (1976)

Aged 10 – 20 Teenage headaches (1985), Meningitis (1989), Diagnosed ulcerated area of cervix/erosion (1990), Diagnosed Asthma (1990)

Aged 20 – 30 Allergy to Septrin (Late 1990’s/early 2000’s) Allergy to Cephalexin (Late 1990’s/early 2000’s), Episode of Viral infection -sore throat -lasted 6 weeks (1990), Difficulty conceiving second child (despite fertility treatment and successful ripening of multiple eggs with Clomid (1994 – 1997) Episode of difficulty swallowing & ‘sicky burps’ – lasted about 7 -8 months (1997ish), Joint pain/muscle ache (ongoing bouts since 1995/96), Tinnitus (1995 +), Otitis Externa Linked to psoriasis?? (1995),Hair Plugging / Folliculitis (1995), Episode of Unknown Facial Rash - small pinpricks lasted 4 weeks (1996), Fatigue (1996), Polycystic Ovarian Syndrome diagnosed. (1996/97), Migraines (1998), Pre-eclampsia with second (last )pregnancy(1998). Symphysis pubis dysfunction (1998), Post partum stress disorder (1998), Post partum haemorrhage (1998), Post natal depression (1998) Clinical depression (1998)
Aged 30+ Diabetes diagnosed (2000ish), Episodes of constipation/diarrhoea with mucus (2000), Profuse sweating, especially at night (2005), Psoriasis diagnosed (2005ish), Plantar Fasciitis (2005ish)
Intermittant foot pain and clicking sensation (2005)
Spondylosis/Spondylolisthesis L5/S1 (2006), Hirsuitism (2007), Leg/ankle swelling (2008), ANA Mild Positive and ESR raised (2009)
Oddities
Borderline Thyroid function results (Showed up on some blood tests can’t remember when)
Megalocytic ???/Macrocytic ??? Anaemia on blood results (Showed up on some blood tests can’t remember when)
Treated with Metoclopromide for long episode of nausea - spontaneously resolved after 6/8 weeks (shd be on James St Medical Records)
Family history –
Father has ulcerative colitis 1977.
Mothers family – mum’s cousin died of MS 1990, cousin diagnosed with epilepsy
 

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Hi Sarah,

I think that's a pretty good outline of your health and if I was a doc I would be glad to have it as a starting point :) Believe me it's not as long as some of my 'notes' I have taken to my doc :lol:

Do you know what the figures on your ANA were? It's a good idea to include that and also the ESR number. If you have copies of the tests even better, but not essential.

I just would add any meds you are currently on and any alternative treatments too. I mean he will probably ask you loads of questions with that included, but just in case he doesn't.

My advice would be don't wear makeup or nail polish, they can tell a lot from our skin and nails sometimes about systemic diseases.

Oh one other thing is if you don't think your rash will 'show' at the appt - they have a habit of disappearing when we see a doc............do you have any photos of it? If it's present today I would take a photo.

Lots of luck and let us know how you get along.

love
Lily
 

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Discussion Starter #3
Thanks Lily

Don't need to worry about the blood tests. All the tests done by the path lab are loaded onto a central server from where anyone who has the right clearance can access. My diabetes consultant was asking me why I looked so ****** miserable....so I told him. Right there and then, in the middle of the consult, he connected and checked out the results.....'there does seem to be some abnormal serology' he said.
My GP ordered more tests when the ESR then ANA came back abnormal. He did C3, C4, Complement and DS DNA. HE said that way they will be on the computed server when the appt for the rheumi comes back, which it did within a month. Haven't gone back to the GP for these results. What's the point of taking a morning off work when it won't do anything.

Good idea about the rest though. Do you do much with alternative therapies? I have hopi ear candling to help my ears..............and I will commit unspeakable acts for a back rub/massage from the hubby :lol: but that's about it. It's an avenue I would like to explore further,
 

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Hi,

No I have trouble taking a lot of things so am wary of anything únproven' or that may interact with all the meds I'm on.

Some things like fish oil can help with arthritic pain some people have found, I leave that one alone because fish gives me anaphalactic shock :lol:

There are a few other things people find help but the basic advice is to eat well following the healthy diet guidelines and for me at least limiting some of the gluten and tomatoes tends to help just a little with the pain and is worth it. I have to avoid the sun as much as is humanly possible and wear sunscreen all the time and a hat. I also try and destress (when possible) and get sufficient rest and enough exercise to keep those joints moving.

love
Lily
 

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Sarah,
You do need to convey all that has been going on with you and not try and overwhelm that doctor with too much information at once. It is important that he know what is the main problems with you at this time. It maybe a matter of starting fresh and trying some new things to see what will work for you. I would try and list all the current problems you are having right now and another list of what has happened with you in the past that is or have been a problem in the past.
It is important to rest as often as possible as the body has to charge more often for those of us with extreme fatigue. You do not always have to sleep to rest but sitting down with your feet up for an hour or two often can give you enough to do another couple of hours of things. When you are resting try to change positions like every half hour to keep the stiffness down and the joints going. Let the doctor know if these things are a real problem for you right now, as they sometimes can put you on meds to help with some of this.
Take a breath and relax as getting worked up about the up coming appointment will not help much but do be ready for that day and have everything you do want him to know listed on a sheet of paper as it will move things along and make good use of your appointment time with the doctor. I do wish you the best and remember to be knowledgable about any tests the doctor order for the next appointment so you will know what the doctor is talking about. It is a life long education with having lupus and you never stop learning about it. I hope you feel better soon.
 

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I think your medical history/symptoms has been summed up very nicely. It will be easy for him to know what your current symptoms are through his talking with you, and then you can also remind him that all the stuff in bold are issues you are currently suffering from. I was not so organized on my first trip to a rheumy, but it still all worked out as they have their own organized way of eliciting information they need too.

My other suggestion is to make sure you let him know how badly these things are affecting you in terms of what you can/cannot do. So many of us will say we have joint pain, but then won't go on to say that we can't type for more than a few minutes, or are unable to open jars, etc. Most doctors will ask for a number on a scale from 1-10 for what your pain level is, but you may want to describe how it affects you personally in more detail if you are able to.

Good luck at your appointment tomorrow - I hope you've found a good doctor and will soon be on your way to answers and treatment that will help ;)
 

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Hi Sarah,

You have done a wonderful job. Sometimes the doctor likes to have a copy of that information.
Good luck I will be thinking of you tomorrow.
Let us know how it goes.

Love,
Lyn
 

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Hi Sarah,

Good luck today and please let us know how it goes.

I think your list is good information and a great briefing of your past history.

It really is smart to journel our illness/symptoms as it all runs together as time goes on.

Thinking of you today. Fingers crossed for a good appointment.
 

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Discussion Starter #10
Don't know what to make of todays appt. Rheumi said I had been there cos GP suspected Lupus. Said my blood result ana originally showed positive, but the second ana was negative so the lab test didn't run the DS DNA my GP had asked for ??????

Since the second ana test was negative then I can't have lupus as it can't be diagnosed without supportive bloodwork.

They diagnosed me with fibromyalgia. It just so happens that I have other symptoms, allergy to sunlight, allergy to septrin, headaches etc. They are just co-incidental and make me unlucky, but not a Lupie.
 
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