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Discussion Starter · #1 ·
Hi,

It's good to be here. Thanks in advance for reading this. I need help with a confusing situation and would be grateful if someone could help me.

Firstly, I'm male.

For the last few years, I've been having recurrent infections. They have been disruptive and won't go away easily even when the antibiotics used show no resistance to the infecting pathogen. The infections have been lab tested against many different antiobiotics, which were shown to be effective.

I do not have HIV/AIDS, nor any STD, and have been tested several times over a period of years including very recently. I do not live a lifestyle which would put me at risk of catching STD's or HIV/AIDS. The AIDS tests were for the benefit of doctors in the process of elimination.

My infections usually trigger an onset of symptoms of unknown cause. Those symptoms last for weeks or even several months. I have had a rash on my face for several years. At first it was small, but it grew and is now moving across my nose. The rash is inflammatory and is not caused by any infectious agent.

I had never heard of Lupus until a couple of weeks ago.

Recently, after a five week infection that should have been trivial to cure, a consultant pathologist was highly recommended to me by several people. he is the head of the Pathology Department of a big hospital and I saw him privately. He found that I am immune deficient. Very immune deficient.

He found that I have low levels of haemoglobin, low white blood cell count, Selective Immunoglobulin M Deficiency (a known cause of SIgMD is Lupus), and vitamin B2 deficiency that was not caused by poor diet.

During that infection, I got the usual 'symptom set of unknown cause' which are still happening now. I won't explain what they are. I'm sure you're all too familiar with them.

A couple of weeks ago, a nurse friend who has Lupus in her family, suggested that I get tested for Lupus. I had never heard of it, but looked up the symptoms. That was the first time I had ever read of anything that sounded like my mysterious illness and it sounded very similar indeed, particularly when reading people's stories. Not just the symptoms, but the whole experience.

I'm British, but I live in one of the smallest countries in the world. I found a rheumatologist. I went in, sat down and told him why I was there. He laughed and told me that the chances of a man having Lupus were so small, they were statistically insignificant. I was thrilled.

He looked through the blood tests which were done by the pathologist and told me that if I had Lupus, my Lymphocytes would be well above normal. I was doubly thrilled. I checked that he said ABOVE normal. He did say above normal.

He examined me and spent ages on my lungs, I guess because they make high pitched whistling and squeaking noises at the moment. He didn't check out anything else that I said was wrong.

He concluded by saying that I don't look to him like someone who has Lupus, and I was triply thrilled. But simply because I have a family history of autoimmunity (mother:Reynaud's, grandmother: Rheumatiod Arthritis, niece: Myasthenia Gravis etc. etc.) he would order an ANA test just to be certain, but I shouldn't have it yet and should wait for another month.

Wait for a month? I found that puzzling.

I got home and started looking stuff up on the internet.

.... "raised Lymphocyte count?"..... nope. This site says that the Lymphocyte count is LOWERED in 85% of Lupus patients.

.... "Lupus in a man statistically insignificant?".... nope. One in ten.

.... "wait a month for an ANA test?"..... seems dumb.

.... "don't 'look' like someone with Lupus?". I could only find lots of stuff that says that people with Lupus often look perfectly healthy, even while their insides are being destroyed.


Folks, I'm really confused. I don't know what to think and I don't know what to do. There aren't that many rheumatologists where I am and I'm no doctor. Is he right? Am I missing something important?

Thanks
 

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Hi Eddie,

Yep, I'd be confused too. What odd statements. First off lupus patient's bloods tend to be very different and it is hard to have a norm. Yep, the low WBC is significative as are many other things you've said...

You COULD have raised lymphocytes, I mean I do (or is it leucocytes, never can remember which), but hey, I always have to be different from everyone else :lol:

There is no reason to WAIT for an ANA test unless these symptoms that you have been having have only been there for a very short time and he suspects a virus or something else (sounds like they've been there longer). You also need to bear in mind that a negative test does not exclude lupus.

And yes, one in ten lupus sufferers are men and I can proudly say that the Belgian association's new vice president is, yes, you guessed it, a MAN!!!

Um, after all that, you might be thinking that I'm presuming you have lupus. I'm not. Lupus is very hard to diagnose - got to give the docs some slack here :hehe: You COULD have an autoimmune disease (of which lupus is one) and that is well worth looking into, then again, you might not.

I must admit that I would try and look for recommendations for a renowned lupus rheumy (not all rheumies know a lot about lupus) and whether your tests are negative or not I'd go see him/her - I'm presuming that you might not need a GP referral here. Getting recommendations through the board here might be hard but we do have quite a few "European" members floating around (and some Irish posing as Belgains :rotfl:) so you might get lucky.

You could post about that in the "Find a lupus doctor" section.

It would also be well worthwhile looking at the diagnostic criteria pinned at the top of this "not yet diagnosed" forum to see if things fit there with regards to your health problems and history.

bye for now, I'm off to bed...1 AM here :)
Katharine
 

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Hi Eddie, and welcome to the board.
You are not missing anything....the rheumy is tho. Second, there is NOT a specific definition of lupus or not with an ana test. There are a small group of us who have NEVER had a positive ana test. I happen to be one of those, my first cousin was another. There are a LOT more specific tests for lupus, anti ds dna, apls, acl, just to name a few.

You are correct that 1 in 10 of people with sle is a man. For some reason some rheumy's decide that they know ALL about EVERYTHING and discount anyone who is a challenge to their preconcieved notions. The first rheumatologist I saw told me I had 5 years to live. That was in 1988. Sorry.....blew his concept! The next, told me that unless he saw a symptom, he didn't believe it happened. I asked him if I should call him at 3 AM when I was running a fever or my rash was back.

In my experience a doctor who refuses to learn or accept to work with the patient is not one I will be able to work with. I have been known to take in new literature to my doctors just to see what they have to say. Those who are threatened by my doing this don't last long. Several years back, I bought the big Dubois Lupus book and loaned it to my pulmonologist. It helped him and he kept it for about a year. Had he been threatened, well, bye-bye. As it was, he was glad to have it as a lot of the lung issues I had then were covered in the book.

When I was looking for the rheumatologist (#4) who has been with me for 16+ years, I took a piece of paper, divided it in half, then on one side, put down what I need from a doctor. On the other, wrote what I bring to a doctor. Once I had my list complete, I called him, told him I needed a new rheumy, read the list to him, both sides, then asked if he thought we could work together. He was surprised, said yes, and the rest is history. BUT, it helped me to identify what I really wanted at that time. Perhaps it is a way for you to eliminate a rheumy who is not a match for you. Don't forget, you are the employer, NOT the other way around.

You are not out of line with your thinking. Your friend who suggested sle was wise. If you have to look for another rheumy, maybe try my list idea. Even if you don't go too far, it does help you to identify what is important to you.

Whatever, Good luck,
Sally
 

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Discussion Starter · #4 ·
Hi Katharine,

Katharine;538169 said:
You COULD have raised lymphocytes, I mean I do (or is it leucocytes, never can remember which), but hey, I always have to be different from everyone else :lol:
Katharine
You're right. It says leucocytes on my lab results. That's just my non-medical brain connecting half-words and making up new illnesses.

Katharine;538169 said:
Um, after all that, you might be thinking that I'm presuming you have lupus. I'm not.
Katharine
No. I've read just enough to know that Lupus is way complicated. While I would love to know what is behind my troubles, in my wildest dreams I have never conceived of any illness as complicated and as vast as Lupus. I'm hoping it will turn out to be something curable with some pills.

Katharine;538169 said:
I must admit that I would try and look for recommendations for a renowned lupus rheumy (not all rheumies know a lot about lupus) and whether your tests are negative or not I'd go see him/her
Katharine
I'm now thinking of flying to the UK and finding someone there. The entire country I live in is the size of a large British town with 1/10th the population of a large British town.

Katharine;538169 said:
I'm presuming that you might not need a GP referral here.
Katharine
Recently, I've done everything privately. I've never done that before but I've discovered that I can get anything I want, when I want it, so long as the people are actually available to be got. If you do it privately by paying cash without an insurance company, you can buy whatever you want and refer yourself. I'm done with waiting months for anything to happen. Life is too short and becoming shorter.

Katharine;538169 said:
It would also be well worthwhile looking at the diagnostic criteria pinned at the top of this "not yet diagnosed" forum to see if things fit there with regards to your health problems and history.
Katharine
I looked. Going by symptoms, it's a done deal. Blood-wise, it might turn out to be a world away.

Thanks Katharine. You were really helpful.:)
 

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Discussion Starter · #5 ·
Pink Pearl;538170 said:
You are not out of line with your thinking. Your friend who suggested sle was wise. If you have to look for another rheumy, maybe try my list idea. Even if you don't go too far, it does help you to identify what is important to you.

Whatever, Good luck,
Sally
Sally, thanks. What you said is extremely helpful.

My friend, the nurse, is great. She's worked in big London hospitals for many years. She was with me here last summer for a holiday. I was reasonably well. She was wondering then if she should mention it, but since I was ok and happy, she held back and mentioned it only recently.

She warned me to get someone who knew exactly what they were doing concerning Lupus. I got the best I could find here, but it doesn't seem to have been good enough.

Thanks Sally.
 

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Hi Eddie and welcome to the board.

I love the advice you have been given by Katherine and Sally. I could not have put advice in to words any better then they did. It is imperative that you find a doctor to work with you and not against you.

I live across the pond from you in the good ol' USA, New Jersey and we have some great doctors over here thank god. I do hope as you move forward that you get some answers to your on going health issues and I am confident once you get with the right doctor you will.

I also wanted to let you know I was where you are not too long ago. My diagnosis started with You have Fibromyalgia, then Chronic Fatigue Syndrome, to Multiple Sclerosis and eventuall when things started showing up in my blood work we graduated towards a correct diagnosis. I am a Mixed bag of sorts with Lupus, Raynauds, Sjrogens and now it seems Scleroderma is rearing it's ugly head. I almost forgot that I also have APS (sticky blood).

Moral of my story, hang in there. You know your body best and if you feel that your health is not good then press forward until you get answers. Once you find a good doctor who really listens then all of the peices of the puzzle will fall into place.

In the meantime, good luck and stick around. You will find this forum a wealth of great information with very knowledgeable and supportive people. A really good book you may want to buy is The Lupus Book by Dr. Daniel Wallace. It is written in layman terms for all of us to understand. It is a must have book.

Sure hope to get to know you better. Join us in the chat room sometime.
 

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Hi again Eddie,

If you are thinking of going to the UK for a consultation, the London Lupus Centre is the top of top with regards to auto-immune experienced rheumies. Many people here have gone that route for an initial in-depth consulation before being referred back to the NHS and working through a local rheumy.

Katharine
 

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I would reccomed the London Lupus centre Eddie, Dr D'Cruz specifically. he was the first doctor to listen to me without predjudice in 10yrs or so. By the time i got to him had seen almost every other specialist in the NHS, who all seemed to think I was nuts I believe he too thought me nuts but he did the bloods just incase I wasn't, and Bingo!!. :bigsmile: Therin lies the difference
 

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I'm glad to hear you're going to take the bull by the horns and get to a world renowned autoimmune specialist - even if you have to go privately. You do have some supporting labs and symptoms already, and it's preposterous to wait 1 month before running simple lab work in someone that's had these symptoms for a significant period of time.

Your GP could probably run some of them for you (at the very least the ANA). Even if bloodwork is negative, it's still in your best interest to see a very well qualified specialist.

I am IgA deficient, but it's apparently the best of the deficiencies to have. I do not have the same trouble fighting infections with antibiotics, but I do often have to take them twice as strong and twice as long as the typical person. IgA deficiency is also associated with lupus...

Good luck to you and I hope you can get in soon and get some answers and most importantly the right treatment to help!
 

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Discussion Starter · #10 ·
Katharine, thanks for pointing me in the direction of the London Lupus Centre. I am checking them out now. Recommendation normally turn out to be the best.

Karol H, I have a question for you, but I'll create a separate reply.

Pollianna, thanks also for the LLC recommendation. It sounds as if that's where I have to go.

Maia, yeah, I read about IgA deficiency. If I remember correctly, it affects the mucosal areas and you would be getting those kinds of infection.

IgM is the body's first line of defence against infection and initiates the second line of defence, which is IgG. Infections overwhelm me initially, but after a long while I tend to pick up again as the second line of defence arrives late to the battle. ;)
 

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Discussion Starter · #11 ·
KarolH;538203 said:
Hi Eddie and welcome to the board.
I also wanted to let you know I was where you are not too long ago. My diagnosis started with You have Fibromyalgia, then Chronic Fatigue Syndrome, to Multiple Sclerosis...
I spent a long time searching for an answer to something but I haven't found anything. I'm asking you because you have MS symptoms.

Last summer I was standing still having a conversation with a girl. Suddenly, I got a series of vicious electrical shocks in the centre of my right shoulder blade. The shock flashed on and off for a few seconds, just like a neon light does. The pain caused me to go unconscious briefly. When it ended, I staggered forward into the girl.

Immediately after that, my shoulder hurt but it was still fairly functional. The next morning my shoulder was gone. I couldn't lift my arm any more and putting on clothes became 'difficult'.

Steroids worked great, though it reverted back when I finished the course of steroids.

It's taken nearly a year to heal but it hasn't completely gone. The rheumatologist I saw a few days ago said (I think he said) it was likely caused by collagen. I can't find anything about collagen causing electric shocks, but perhaps it was two different thing that happened.

I'm just really curious. I often have big electric shocks but that one was in the nuclear category.

Does anyone else get that?
 

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Hi Eddie,

It sounds like you should see a neurologist. What you described is definitely not normal and should be looked into.

Good luck getting to the root of all your problems.

Take care,
Lazylegs
 

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Discussion Starter · #13 ·
lazylegs;538275 said:
Hi Eddie,
It sounds like you should see a neurologist. What you described is definitely not normal and should be looked into.
Lazylegs
Yes, I saw a consultant neurologist ten years ago at St. Thomas, for about nine months. I was pretty young with no rash. At that time they were thinking MS, but it didn't turn out to be MS. Plus, I had extra things that aren't typical of it.

Anyhow, thanks for your hospitality everyone. You've set me in the right direction in terms of where to go from here.
 

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Eddie,
Hi and welcome to the site by the way. Ok, deep breath, as for some of these statements, not only are confusing, but not true. I have to ask are you scheduled to see this doctor again anytime soon? I would tell him you are confused by his statements and want to know what a lupus patient looks like please? That you had done some searching on the net and found that one in ten lupies are male, did he know that? Are you sure he is a doctor? I am sorry I have to ask, I have heard somethings come out of doctors mouths before but not like this. I think if it were me I would be asking for the ana test and not in a month, the sooner treatment begins the better things seems to be handles. You may, of course do what you will, but I can completely understand your confussion as I had a very strange look on my face reading your post. Your other choice is to travel for treatment, if that is possible. I hope you get some answers soon and start feeling better.
 

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Hi Eddie,

The electrical shocks that you got in your shoulder is not something I ever experienced. Now, if you said it happened down the center of your back when you bent your head forward to place your chin on your chest then I would be more then concerned that it were MS.

You mention that the Neurologist tested for MS and found you did not have it. Do you mind if I ask what kind of testing he performed on you? Also, did you ever have a spinal tap done?

Again, I recommend The Lupus Book by Dr. Daniel Wallace. It really is good reading and so helpful.

Let us know how you get along.
 

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Discussion Starter · #16 ·
KarolH;538293 said:
Hi Eddie,
The electrical shocks that you got in your shoulder is not something I ever experienced. Now, if you said it happened down the center of your back when you bent your head forward to place your chin on your chest then I would be more then concerned that it were MS.
The shoulder was new. Years ago, I used to have electric shocks going down my spine hundreds of times a day, but leaning my head forward made no difference.

I don't get them down my spine any more, but I do get them at the base of my brain occasionally and this has been happening recently. For a very long time now, I haven't bothered seeing anyone about it. The whole medical process made me fed up and was becoming as bad as the illness. Eventually, I got past wondering if I would drop dead. After a while I realised I'm still here and dropping dead was unlikely.

KarolH;538293 said:
Hi Eddie,
You mention that the Neurologist tested for MS and found you did not have it. Do you mind if I ask what kind of testing he performed on you? Also, did you ever have a spinal tap done?
No spinal tap.

They did an MRI. I don't remember much about it. I'm severely claustrophobic and the whole thing was a total melodrama for me involving tranquillisers and grief. If I'm not mistaken, they didn't find any lesions at the time but they didn't tend to share information with me too freely. Being pretty young, I didn't know enough to know what to ask.

Having said all of the above, electrical stuff isn't the main characteristic of what I have. My shoulder was a one off, even if I am still living with the consequences.

Finally, I've managed to find out something about electric shocks. They can, if I've understood it correctly, be caused by inflamed blood vessels in the Basal Ganglia (the bunch of nerves that connect the brain to the spine) or in the Thalamus (the brain's nerve switchboard) and both are highly susceptible to blood and oxygen problems. And I do get blood clots on my skin.
 

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Discussion Starter · #17 ·
Hi Tammy,

onetay;538292 said:
Eddie,
I have to ask are you scheduled to see this doctor again anytime soon?
No. I'm not going to see him again.

onetay;538292 said:
Eddie,
Are you sure he is a doctor? I am sorry I have to ask, I have heard somethings come out of doctors mouths before but not like this.
He's definitely a doctor. The problem here is that this country is tiny weenie. I can't imagine there are more than a handful of people with Lupus here, and most of them will be undiagnosed. The doctors here would not really get to see many people with Lupus unlike in hospitals in bigger countries.

onetay;538292 said:
Eddie,
I hope you get some answers soon and start feeling better.
Thanks Tammy.
 

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For whatever it may be worth I would advise you to have another MRI study done. I am very fearful of tight places too yet I always bring someone in the room with me when I have a MRI done.

A lesion located at the brainstem may also produce the electrical activity and sensations your speaking of.

I think you need to see a Neurologist too and get a exam from him as well. It will certainly help in painting a clear picture for you.

I am not saying you have MS but certainly if your having any kind of Neurological dysfunction then I think it is as important to treat this way also.

I do hope you get some answers. Being in Limbo Land is no fun at all.
 

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Discussion Starter · #19 ·
KarolH;538348 said:
I am not saying you have MS but certainly if your having any kind of Neurological dysfunction then I think it is as important to treat this way also.
I think I will do the London Lupus Centre and a neurologist too. You're right.

KarolH;538348 said:
I do hope you get some answers. Being in Limbo Land is no fun at all.
Thanks. I hope so too. No fun, but I'm so used to being in limbo land.
 

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Hi Eddie,

I have had shooting nerve pain (electrical shocks) in the bicep of my right arm that led to momentary paralysis as well as shooting pains elsewhere over the years. CT scans and an MRI last year revealed no lesions per the neurologist but because of more neurological symptoms recently, my rheumatologist referred me to another neurologist for a second opinion and a second MRI is scheduled for later this month. Recent blood tests pointed toward lupus and ruled out several other possibilities. A full lupus workup was ordered including bloodtests, 24 hour urine sample, and skin biopsies. Now I'm waiting (anxiously) for the results. Hang in there and definitely go to the lupus center and develop an ongoing relationship with a neurologist you trust and feel comfortable with.

Barb
 
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