• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

Update

J

James001

Member
Messages
15
Hey Karen, I posted this a few days ago...

http://www.diabetes.co.uk/diabetes-forum/viewtopic.php?f=15&t=5954

...and promised to let you know how it went. If you remember, I had outstanding appointments with an ophthalmologist etc. I've also had more blood work done.

Today, I decided to cancel all outstanding appointments. I was supposed to be getting the result of my blood work tomorrow in an appointment with my consultant, but I'm not going to show up. If anything has turned up, they can call me.

Up until this recent batch of problems, I had a policy. I wouldn't play cat and mouse with medical problems. I would only see a doctor via A&E. That way, everything is as clear as a bell and what normally takes weeks or months in waiting for appointments and results, instead happens in hours. It worked well and I saved myself weeks or months of hassle and headache. This time, my family and friends persuaded me to change my mind and I now regret it. All this hassle just kills everything. Nothing gets done and one's mind ends up somewhere else.

That's how it went. Friends have argued this issue with me already. I'm not going to reply to any replies and I may not even come back to read them, just to spare you from wasting your own time.

Thanks for your concern Karen. All the best.

James
 
I didn't end up going in for my test results and they phoned and said I should come in.

The results:

1) In a random blood test, my glucose levels were right up at the top of the normal end. Very high normal.

2) I am immunocompromised.
a) I have an abnormally low white blood cell count.

b) The entire range of my globulins are low. As a group, they are very abnormal. I have no idea what a globulin is.

c) Another range of things relating to my immune system are low. One particularly in that range, is through the floor, and the next floor.

d) ...but, I do not have HIV, STD's or any of the usual or unusual suspects that cause immunodeficiency. In spite of extensive testing, they found no infections, or any activity that suggested any infection at the time of the test. Since the test, I have acquired another urinary tract infection and prior to that, my urine smelled of sugar.

3) I have a vitamin B2 deficiency that is not caused by poor diet. Vitamin B2 deficiency is commonly caused by alcholoism, heart disease and diabetes. I don't drink and I don't have heart disease. It can also be an autoimmune disorder.

Hey, thanks folks.

James
 
James,

I am a GP and have no idea what the diagnosis is from the clinical picture and the blood test results.

Whatever is going on it certainly isn't normal and particularly the eye thing sounds potentially serious.

It is bad enough being ill but it is even worse when you have a rare thing that no one seems to know how to diagnose or cope with.

Although you are really hacked off with all the waiting about hospitals I think you need to keep in touch with your various medical team members. You may need referred to a specialist centre for accurate diagnosis/treatment.

Sorry you are having such a rotten time.
 
Katharine said:
> I am a GP and have no idea what the diagnosis is from the clinical picture and the blood test
> results.

Nice to hear from you Katharine.

> Whatever is going on it certainly isn't normal and particularly the eye thing sounds potentially
> serious.

I've reinstated my appointments, including the appointment with the opthalmologist.

> It is bad enough being ill but it is even worse when you have a rare thing that no one seems to
> know how to diagnose or cope with.

They've figured out most of it. They also seem to be onto something else. As I said previously, they've actually been excellent. I just became fed up. This has been going on for years and no one could ever help till my current consultant stepped onto the scene.

> Although you are really hacked off with all the waiting about hospitals I think you need to keep in
> touch with your various medical team members. You may need referred to a specialist centre for
> accurate diagnosis/treatment.

You're right. That's what I'll do.

What I have so far, is a serious Immunoglobulin M (IgM) deficiency (SIgMD) which mostly accounts for my infections. This is a rare and serious disorder in its own right. It is not a temporary fluctuation. As far as I know, it is incurable. No one knows why this illness happens. It means that I can easily become infected with something and not easily fight it.

I thought that diabetes was off the table, but it isn't. They said my blood glucose was "within normal limits". In reality, it was at the uppermost limit of normal, first thing in the morning. I think they want to give me proper diabetes tests. If blood sugar isn't too bad, then I don't want to do this yet. Perhaps in a couple of months. Bit tired. One thing at a time if possible.

Generally I'm ok. No one told me what I was ill. I knew that long before they did. All they told me was the name. For that, I am unbelievably grateful and happy.

Being ill doesn't bother me terribly. Messing around does, but this team haven't messed me around. It was unfair of me.

I'm not afraid of much. I can live with being ill so long as I know what it is, how it behaves and what I can do about it. Last night it occurred to me that I already feel a thousand times better. No longer the feeling that I'm throwing blind punches at some monster in the darkness.

Thanks Katharine. Thanks for your post.
 
You're welcome James.

Several of my patients have immunoglobulin deficiency and they go into hospital and get regular immunoglobulin transfusions (about once a month).

This transforms their lives, thanks to the regular blood donors.

Sometimes even when there is no good answer to the question, "why?" there can be a pragmatic solution.

I hope the docs sort the problem out for you James.
 
Katharine said: Several of my patients have immunoglobulin deficiency and they go into hospital and get regular immunoglobulin transfusions (about once a month).
Click to expand...

I do hope you're right :roll: My understanding is that this is possible for all Immunoglobulin classes (IgA, IgD, IgE, IgG) but not M. IgM deficiency is the rarest and most difficult to treat...

"Replacement of IgM is not an option, as IgM
is not a significant component of therapeutic
preparations of intravenous immunoglobulin."
http://emedicine.medscape.com/article/137693-print

Like everyone here, I wish I had unlimited access to my healthcare professionals but I'll have to wait until I next see them.

Anyhow, good news. I don't have glaucoma. At my reasonably tender age and with my particular career, that's a relief! I may have damage to one of my main nerves though. Don't know yet if I'm diabetic but that's the least of my worries right now. The show goes on. :cry:
 
I do hope you're right :roll: My understanding is that this is possible for all Immunoglobulin classes (IgA, IgD, IgE, IgG) but not M. IgM deficiency is the rarest and most difficult to treat...
Click to expand...

I gather that this is also not possible with IgA deficiencies.

Just to help clarify...our doctor also told us that Immunoglobulin treatments will not work for IgA deficient persons. This treatment, in my understanding, is for people who also have IgG deficencies and/or CVID (common variable immunodeficiency. If you are only IgA deficient, there is no treatment now known. This is according to our Immunologist.
http://dailystrength.org/c/IgA_Deficiency/forum/3270799-has-anyone-tried-human-immunoglobulin
Click to expand...

Still, very grateful for your kind response and nice words Katharine. Thank you.
 
A few weeks later and I've travelled a lot further down the diagnostic road.

It seems that I have Systemic Lupus, with diabetic complications. Lupus is a ****** to diagnose, but everything now indicates that I have it and there is only one (non-crucial) result left to come in.
http://cerebel.com/lupus/

I'm British but now live on a Mediterranean island. The doctors here (all trained in Britain) have been astonishing.

Lupus is similar to Multiple Sclerosis or Diabetes Type 1 in that it attacks something in your body, with the difference that Lupus is not limited to any single thing like nerve myelin or pancreatic cells. It can attack any part of the body simultaneously. It's the disease with the greatest number of autoantibodies and has the largest symptom set of any disease.

If that's it, then it's responsible for taking my immune system, my optic nerve, my skin, my pancreas, my joints (just beginning), my shoulder, my muscles (pain), my nerves, my ability to absorb vitamins and several other things. Remarkably, this far, I'm still able to do just about everything and I am very happy about that.

This has been a fifteen year long road for me. I've been unwell on and off for so long, that this news isn't news. Nothing has changed except that 'it' now has a name. I am cool about it. I have no problem whatsoever accepting it and I have no anger.
 
I can only wish you as well as possible ans hope you can keep up with everything
 
I can only wish you as well as possible ans hope you can keep up with everything
Click to expand...

Thanks hanadr. I'm hoping to do ok. While there is much damage, everything is still functional. I'm like a torn flag... but I'm still flying!

My pancreas complications are mild by comparison and I hope it won't get worse.

In the short time I've known what I have, I've been able to read other people's stories (how amazing it is to be able to do that after so long of not even knowing what was wrong!) My understanding is that like me, many Lupus people tend to look perfectly well (I have a rash and stuff on my face, but it's mild now)....

Lupies [people with Lupus] do not look sick. We usually look perfectly healthy.
http://www.painterjayne.com/personalpageaboutmylupus.html#lupus

A person with lupus doesn't always show their illness outwardly. They can look perfectly healthy, but inside their organs are being destroyed.
http://www.angelfire.com/mo/nut2oak/index8.html

Lupus has been called the ‘Invisible Disease’. Unless the skin is involved, the devastating effects of SLE cannot be seen. Even seriously ill individuals often appear perfectly healthy.
http://www.geocities.com/issymissy/facts.html#target_overview_here
Click to expand...

...so at least I don't have to look ill too.

The biggest problem is my immune deficiency syndrome. That's being an endless bummer, but luckily not the kind of stuff that puts me in bed at the moment. From now on and forever, I have to stay away from crowds and sick people where possible. I was going to buy a big dog but I'll have to ask the doctors. Probably not, I guess.

Lupus is the Latin word for 'Wolf', a pack-hunting predator that attacks from all sides :twisted:

Incidentally, if you read this thread, I wasn't afraid the doctors would find something. I was afraid they wouldn't. It had all gone on too long and had become scary.
 
A big dog is more than likely to bring people round you. Go for a walk alone, and you'll be lucky if someone says "Good Morning!". Take a dog and you get everyone wanting to stop for a chat. A Cavalier King Charles Spaniel, which never stops wagging its tail is a real peopple magnet. Still meeting folks in the outdoors is a good way of avoiding infection.
Also i bet there'e a Lupus support group somewhere.
 
hanadr said:
> Also i bet there'e a Lupus support group somewhere.

Yeah, I've found one but haven't subscribed yet. I'll also probably come here from time to time if and when I need more diabetes advice.

> A big dog is more than likely to bring people round you.

Dogs are great and I live just above a beach. Most of everything I do here is outdoors. The only problem is that dogs go licking everything and then would lick me too!

Anyhow, see you guys around.
 
Back
Top