2 more referrals...

Well it took two days for the lactic acid to clear from my leg muscles after doing some walking on Saturday...and an extra day for the sunburn to settle :eek:
I seem extremely sun-sensitive now...more so than I used to be...hmm like a Lupus patient only I test Negative.
Saw my GP yesterday. He gave me a new referral to my Gastroenterologist & agreed to make an urgent appointment for me. Nice! GPs secretary just rang & said that they slotted me in next Tues...lucky!
(Now to write a list of gut/liver/autoimmune questions) Cost first visit (again!) $220. Medicare will refund me $124.

I asked my GP if he thought my Dry Eye could possibly be infectious and he said outright "No it's autoimmune for sure"...(hmmm you and I know that increasingly autoimmune diseases are increasingly being found to be associated with...pathogens...oh well). He gave me new referral for my Rheumatologist and said "He's the best guy to help you". The new sudden onset Dry Eye, the profound level of weakness & fatigue plus new onset "qualities" of early dementia LOL are new pieces in the puzzle...sigh...

Oh I also rang a helpline for Mitochondrial Diseases & got some help from a lovely lady doctor. As a result of this I am seeing a second Neuro who is actually a Neurophysiologist & Neuroendocrinologist. He has some expertise & interest in diagnosis/treatment of Mitochondrial Diseases. My appointment is not til May...sigh...cost $330 - 445 for first visit!
(By the way... my first Neuro ordered an MRI & MRA. No gross pathology. Blood vessels OK. NO SIGNS OF DEMENTIA...yet!!!...a few non-specific hyperintensities...)

Comments

Hi, lupus is unpredictable. You can be very ill and yet test negative. And then one day you'll feel fine and you'll test positive. My advice is not to rely on one test only. Have it done a few times.

Other values that are typically raised are:
- cholesterol
- IL10
- IL6

With lupus you will have a leaky gut and low DPP IV enzym activity. The GAPS-diet is very interesting for people with lupus. Gluten, too much milk and mais are hard to digest for lupus patients. They will irritate the nervous system => immune system. The big undigested molecules are stored in the connective tissue and cause fibromyalgia after a while.

You might test positive to mold allergy in blood.
Have an urinary acid test done and if the test indicates too much lactic acid, you can consider Alkala N or something to rebalance the acid/base in your tissues again.

All the best,

Marlne
 
Marlne;bt6705 said:
Hi, lupus is unpredictable. You can be very ill and yet test negative. And then one day you'll feel fine and you'll test positive. My advice is not to rely on one test only. Have it done a few times.

Other values that are typically raised are:
- cholesterol
- IL10
- IL6

With lupus you will have a leaky gut and low DPP IV enzym activity. The GAPS-diet is very interesting for people with lupus. Gluten, too much milk and mais are hard to digest for lupus patients. They will irritate the nervous system => immune system. The big undigested molecules are stored in the connective tissue and cause fibromyalgia after a while.

You might test positive to mold allergy in blood.
Have an urinary acid test done and if the test indicates too much lactic acid, you can consider Alkala N or something to rebalance the acid/base in your tissues again.

All the best,

Marlne
Hi Marlne,
Thanks for these ideas. Have a lot of allergies & intolerances...sigh...
 
I'm glad that you are going to see specialists and so hope you get answers and help.
 
A condition some with chemical sensitivity test positive for or have some positive results within the many parameters on the test is porphyria, which has the symtom of sun sensitivity among many many other things. I believe some doctors will diagnose it only with a certain number of abnormalities in the porphrin pathway, but others believe fewer abnormalities can qualify for a diagnosis of porphyria. Im new here so dont know if this is commonly known on here, if so, sorry lol
 
Hi Meryl, you may remember that i am also very interested in the possibility that i have been misdiagnosed and may have Lupus, i have also been looking at the possibility of sarcoidosis (i have lung involvement) My cognitive abilites have improved over the past two years, but now my brain seems to have slowed down again and i have new weird aphasia problems as well as memory. Walked to the shoe cupboard yesterday to take my slippers off and put my shoes on to go outside - stood looking in the cupboard for ages, until i nearly gave up. I was looking straight at my shoes, but was upset because i couldnt find my slippers! (which i didnt want and that were already on my feet) I also keep using words that relate to my last thought or converstaion rather than the current one. e.g i was lighting the fire when my son asked me about the toaster, i shouted ' hang on. im just putting a loaf on the fire'!?
I do hope that you find some more asnwers from the specialists. I cant afford to go private and my GP wont refer me within the NHS and even if they do, as soon as they see i have the M.E diagnlosis they instatntly seem to disbelieve everything i say or play it down. (SO ANNOYING)
As Marlene says, you can have negative results and still have Lupus - its a bugger to diagnose (much like M.E!)

What i would like would be to see a rheumy and be properly investigated for Lupus, a neurologist for my cognitive problems
Have my eyes looked at (optic neuritis type symptoms)
Have sarcoidosis ruled out (or in)
Have a muscle biopsy for acquired mitochondrial disorder.
Take careMeryl, and very good luck to you.
 
tdf;bt6715 said:
A condition some with chemical sensitivity test positive for or have some positive results within the many parameters on the test is porphyria, which has the symtom of sun sensitivity among many many other things. I believe some doctors will diagnose it only with a certain number of abnormalities in the porphrin pathway, but others believe fewer abnormalities can qualify for a diagnosis of porphyria. Im new here so dont know if this is commonly known on here, if so, sorry lol
Hi tdf,
Thanks for reminding me about Porphyria. I don't know a lot about it. My GP is reluctant to do any special testing so hopefully the Neurophysiologist/Neuroendocrinologist I see in May, will consider this.
 
Hi justy,
Your cognitive issues are very similar to mine. I have already paid to see one Neuro & not really got any answers. I see another one in May.
I am also looking into Sarcoidosis. I have already learned that Sarcoidosis & Lyme occur together. I joined a fb group to find out more about it. Seems a lot of them are trying antibiotic therapy for their autoimmune condition.

Psoriatic arthritis is also hard to diagnose, I am finding out. They are guessing on the basis that my brother has classic skin Psoriasis! I have dermatitis on my hands & used to get flexural eczema as a child. Maybe the skin specialist could do a biopsy??? (GP refused) sigh.....
Autoimmune stuff is crap!!! No-one can diagnose it :(
My lungs are clear, but I get nasal septal ulcers as do people with Sarcoidosis & Lupus. ENT did an ACE test. It was borderline high normal, so he said it should be followed up by my GP.
 
Yes i agree autoimmune proble,ms are a bugger to diagnose. I have a CT scan of my lung which the specialist described as a shadow - he said it was probably fibrosis which is causing the lung pain and not to worry about it! what a ridiculous thing to say. Im going back to the GP in a couple of weeks (have to wait that long for someone to take me) and im going to ask him exactly what the lung man meant by that, and if its not a problem why am i so breathless and full of mucus and lung pain (like pleurisy which i had 3 years ago for 8 months) and why do i have severe fatigue and cognitive probs etc, hpow can they not be related, why have they not looked into autoimmune? i also have the knobbly finger joints (slightly swollen) swollen ankles (both) and eye issues (gritty dry, pain on moving eyes and ocassional svere blurring in one with almost blindness in that eye that comes and gos) also stiff joints and nasal and oral ulcers, nose bleeds, severe easy bruising ( the list goes on, of course fatigue and PEM are big too!)
I also notice that my daughter who was ill for a few years had various autoimmune type symptoms.
I do hope we get there and find a cause and get some treatment! What is the FB group you joined?
Take care, Justy.
 
Glad to hear meryl and fingers crossed for specialist aid now. Gee whiskers can't they pull this whole thing together yet. Oh for having to be gentle with them. I've an awful suspicion - enviromentals - genes - vaccinations - what even childhood abuse from the high in the sky psychos are not the answer. (least of course) are not the answer. What is going on in medical findings/research will find.
 

Blog entry information

Author
merylg
Views
451
Comments
9
Last update

More entries in User Blogs

More entries from merylg