Private consultant's appointment. Having a wobble.

Have no one to bounce this off so know you kind folk here will just look at the situation.

Had low B12 with lots of symptoms. Started s.i. last August.can tell when B12 is wearing low but I've felt for a long time there's something else not right. Most B12 def symptoms have gone with s.i.

Have a goitre. NHS Endo says nothing wrong. Says all blood tests normal, and they are in range.

Respiratory dr ( sent by GP due to B12 def air hunger & waited 8 months for appointment) says raised ANA referred to Rheumatologist. Another 8 month wait so have booked a private appointment for late May and will mean a round trip of 5hrs.

Beginning to wobble--- what if she says nothing wrong, go away, Do I just have to accept I'm going to feel cr** on and off ( mostly on) for rest of my life.

I now realise this has gone on for years and I misunderstood what was happening.

It's either a sunny day ( I stay in shade ) or I get overheated for some reason. Headache starts, i go from feeling cold ( always cold) to burning up, feel sick, cannot do anything but lie in a darkened room. My words get confused and it's an effort to speak or do anything. Can last from 2 -5 days. My face feels as if it's burning up, sometimes the redness gets worse, other times feels worse than it looks.

At other times I get sharp pains in my head, odd pains in my arms and legs-- as if my bones hurt--- and my knees and hips can ache. But none of this is constant. After being in bed for a day and a half with the headache as above, I feel ok today.

Only other odd things I can add are the dry eyes ( opthalmic consultant a couple of years ago said there's inflammation at the back of my eyes and I have to use drops several times daily) have got worse, throat feels dry and tight and I keep getting blisters on my mouth and now inside my nose.

The tiredness never completely goes away and I have to limit what I do.

I'm a wreck.

Do I make a list of all of the above? Or just go to consultant and see what questions she asks ? I've been asked to send all blood test results ahead.

I think I'm just getting panicky because I see this as my last chance--- if she can't tell me what's wrong, no idea where I go.

Edit: know I have high cholesterol and high blood pressure but reacted badly to all meds so GP stopped them all. Don't drink, never smoked, vegetarian. Bit overweight but cannot lose weight.

Thanks for reading, sorry it's so long.

[holehead]

Hi

Have you blood results you could post then the good people here can assess your b12 etc. If you can post the full count as there will be other markers we need to look at

Mark

[Foggyme Administrator]

Hi 06Hollyberry. Reading your post is just like reading about myself...that one sentence 'I'm a wreck' probably can't quite encapsulate just how wrecked you feel 😖.

In my case, I had many of the sumo so you describe on and off for years (dismissed by GP), was eventually diagnose with B12 injections, some symptoms went away, then I had an acute epsoide of all symptoms returning - and more besides - and it was as if my B12 head suddenly stopped working. So...I started on all the 'ologies' looking for answers...and finally made it to a rheumatology atoll gist following a very high positive ANA test. To cut a long story short, I've now been diagnosed with undifferentiated connective tissue disease (UCTD) an autoimmune condition) and hope to re-start treatment when I see the rheumatologist next Wednesday (allergic to first treatment so hoping the second lot will go better).

Only telling you all this so that you'll know that you're not alone, you're not depressed or mad (what some doctors like to suggest) and that there will be light at the end of the tunnel.

So...the positive ANA test. Some people have a positive ANA test and don't have any underlying autoimmune condition. The key here is symptoms - and you have plenty of those 😖. The rheumatologist will therefore been looking at your symptoms and you medical history - all of it - very closely.

The best advice I was given before my appointment with the rheumatologist was tell,them everything. So...

I word processed all of my symptoms and printed these to take with me (two columns on an A4 sheet - very embarrassing - but very accurate - had to keep going back and adding things that I'd forgotten 😖🙃. Then...

Medical history is very important. I did the same and wrote down everything that I could remember since I first started getting bouts of illness (which I now understand are flares). I included everything - and it's a good job I did because things that I had not connected to the bouts of illness were indeed significant - and helped them to make the diagnosis. (Things as apparently diverse as gynalogical and maternity history, trigeminal neuralgia, Achilles tendinitis, ear, eye and throat problems, rashes, and on and on and on...

Having the printed medical history and symptoms saved a lot of time...the rheumatologist was able to scan them quickly and it saved them having to do endless writing (pages were just popped in my medical notes) so...that saved more time for talking about what they thought and what they could to to help me.

Have to say within ten minutes of looking at all the symptoms and medical history I was told that I had features of what could be several different autoimmune conditions. So, more testing.

And this is where perhaps where it migh get tricky seeing a private consultant, because the many antibody blood tests that they should want to do can be very expensive (probably up into four figures if they do the tests they should do). However, most consultants will transfer people to their NHS list to have these tests done, if you ask. (Whenever I have a private appointment, I always check first to see if the particular consultant is willing to do this, if necessary - most are, some don't).

About autoimmune conditions - of which there are many. The rheumatologist will probably be looking for things like Sjogren's, UCTD, MCTD (the M is for mixed), rheumatoid arthritis, Lupus...and a whole host of other things - should test for them all.

Autoimmune condition can be very difficult to diagnose. And from what I now understand, a diagnosis can often change constantly, depending on whatever the current disease profile is (getting better, getting worse, hardly there at all 😀) - but this doesn't mean (or shouldn't mean) that any treatment or care is stopped (though like with B12 deficency, this sometimes happens with some rheumatologist - it all seems to depend on finding a good rheumatologist).

A good place to look for support and help with potential all things rheumatology and autoimmune conditions is the Lupus UK forum on Health Unlocked. They deal with all things autoimmune (not just Lupus) and are very friendly and knowledgable.

So, the best advice I can give for now is make a medical history and symptoms list to give to the rheumatologist and make yourself a bullet point list of all the questions you want to ask. Also a good idea to ask about timescales - and when you could reasonably expect to be offered some treatment.

I have to say that I usually down play how ill I feel...but when I went to the rheumatologist, I didn't. I was very honest and quite direct about how ill I had become (think she was quite shocked when I told her that some nights I went to bed (having woke up to go there) not knowing if I'd be getting up the next morning). So...do be honest and say how very ill you feel (something I always find very difficult - and embarrassing).

Note: Be aware that if you actually start treatment privately, it can be difficult to the transfer back to the NHS, and all treatment thereafter may have to be paid for. (Again, if treatment is advised on first consultation (mine was) ask if you can be transferred to the NHS for the treatment).

Anyway 06Hollyberry, I seemed to have rattled on a bit. Really just wanted to let you know that I'm just like you, and there many others out there in a similar position (see the Lupus UK forum).

Very best of luck with the rheumatologist, let us know how,you get on. Will be keeping everything crossed for you 👍 x

P.s. Like you, I saw an endocrinologist who said all was normal - the rheumatologist has re-referred me for review - suspects thyroid issue as wall as UCTD.

[Hidden]

Thank you for your replies.

Foggyme , thanks so much for such a comprehensive response. I'm building up a health picture with as many points as I can. I was just in 2 minds which way to go and you've really yelped me see it all more clearly.

I suspect I have Lupus, and I know very, very little family history but it is a condition I remember being discussed in that some relative had it--- I just don't know who and there's no way of finding out. ( I only remember listening in on the conversation because I thought ( at about 8 years old) it meant the relative had become a wolf--- far more interesting to me than what it actually was!) I want to make sure my daughter and her children have a bit more info than I was left with.

holehead , there are far too many blood results to type out--- I gave up counting at 45. I was sent the blood form for the NHS Rheumatologist, had them done, and was then told I wouldn't see anyone for at least 8 months. No B12 but I'd expect it to be high as I s.i every 3 weeks. The only abnormalities were cholesterol and ANA. Kidneys seem to work ok so that's a plus.

I've learnt so much about auto immune conditions since I joined here, can't thank everyone enough for sharing their knowledge. I'll post again when I've seen the Rheumatologist.

[Foggyme Administrator in reply to Hidden]

Hi 06Hollyberry. Sun and facial rash fit the Lupus profile and just in case you don't know (but bet you do), autoimmune conditions often run in families (my father had Lupus and MCTD).

Keep on going...get the diagnosis and treatment you need...you owe it to yourself...and all those close to you 😉😖

Good luck...will watch out for updates.

[Lizreds1]

Hello

I might be slightly off here but, I suffer from chronic migraines which I feel is a symptom of b12 deficiency, the pain and aches and headache sound like migraine, migraine can affect different parts of your body, I know I have a migraine coming as my knees will hurt walking up the stairs, there is a name for this type of migraine but can't remember (have trouble remembering what day it is most days) might be worth investigating.

[Bengie in reply to Lizreds1]

How many times have I said to my doctor that my migraines will stop after I get my B12 injections and they look at me like I have two heads but I know differently and they do stop!!

[Hidden]

Thanks Lizreds1 and Bengie , I've had migraines since I was a child and I suppose these could be a variation on the usual ones but they're not one sided, more across the whole front of my head. I also used to get numbness in my face, flashing lights and heightened awareness of smells but none if those present in these headaches.

And the headaches are persisting even though I'm s.i. every 2-3 weeks.

Wouldn't wish migraines on anyone, they're horrendous, and I really feel for anyone suffering them and trying to work and/or look after family.

I'll keep tweaking the info I'm taking to this dr and I suppose if she decides it's nothing in her field, at least that will rule out a lot.