Finally some answers

Hi everyone,

I have been lurking around on the forum on and off as I have been waiting for an appointment with a new Neurologist. Luckily for me I found another member here who was seeing the same Neurologist that I wanted to go to and I plucked up the courage to phone his rooms to see how much it would cost. From the information that the member gave me I have managed to see him and not have to pay as the government is paying for me. What a relief!

This truly has been a complete Godsend. He is WONDERFUL!

From the moment I walked in with all my symptoms and feeling very emotional about what was happening to me he said and I quote "I don't want you to worry, we will sort this out together, I know I can help you."
What a wonderful thing to hear after being in limbo now for almost 5 years.

I just want to say a very BIG thank you to everyone here who has helped me, supported me, answered my sometimes silly questions and been concerned for my well being.

Quix, everyone, my heart felt thanks for all your great support, emotionally, mentally and your help with knowledge that I know I would only ever find here.

Well, I have had the T3 MRI, organised by my new Neuro, also some special blood tests sent away to Sydney in Australia and some X rays.

The results are in FINALLY. I now have a diagnosis. It is not MS.

I have CIDP. Chronic Inflammatory Demylinating Polyneuropathy.

Would you believe he picked it up in the Neurological examination, something that the other Neuro hasn't bothered to do for almost 2 years except to say go back and see your GP.
I am almost certain that the x- Neuro thinks that I am making up my symptoms and trying to pull one over on him.

Well he was completely WRONG WRONG WRONG!

I told my new Neuro what he said and he said that I do definitely have Neurological symptoms with extreme weakness in my legs and feet, absolutely NO reflexes at all below my knee, balance problems etc etc, all symptoms of this disease. He also said that ANYONE AT ANY AGE CAN GET MS! So, all that misinformation from the x-Neuro was WRONG just as Quix said it was.

All my symptoms fit like a glove, the burning pain, the dizziness, heat sensitivity, weakness, tiredness, shakes in my hands, clumsiness, and the problems I am having with concentration, bladder, messing up my words spelling, speech, unexplained high bp etc. The one symptom I wasn't aware of was how unbalanced I am with my eyes closed or trying to walk in the dark, I fall over. This is a real symptom of CIDP
I am going to him on the 31st for nerve tests BUT he tells me that he already has enough criteria for a diagnosis but he just wants to be sure.

I am just so grateful to everyone for their input that helped me question the first Neuro, and kept my determination up there to keep pushing for answers.

Thanks so much everyone. x

It seems I will need to go into hospital for 5 days to have "Ivig" infusions. He tells me if this fails that there are lots of other treatments we can try.

Does this now mean that I have to leave this forum and post in the Neurology forum?
I don't see one specifically for CIDP. It would be rare wouldn't it? There is not a lot of info out there really.

TB

[Lulu54]

NO! NO! NO!   You may not leave us - you have too much knowledge and experience that needs to be shared with others here ..... besides, there are mob rules- once you belong to our gang you cannot leave.  We will let you post too on the Neuro forum, but you have to promise to visit us regularlly and keep us up to date about your treatment and other experiences.

I know nothing about CIDP and hope to learn more about it through you.

I am so happy for you that you finally have answers - it took lots of perseverance on your part, and now you have the chance to feel better.  Good for you!

my best,
Lulu

[Erin0313]

Congratulations on leaving limbo land! As for leaving us because it's not ms - NO! I think that you can, as you say, continue to lurk as long as you want.

I would be very interested in hearing about your IVIG treatment. My new neuro is talking about using it to treat me. I have an ms dx but also something else that keeps me in that awful limbo land. When they treat the ms successfully, the "other" flairs up. We haven't been able to find a balance so the IVIG is being discussed.

Even though you don't have ms, you still have plenty to bring to the forum and hopefully the great people both with ms and limbo-landers will be able to help you on your journey.

  Good luck

  Erin :)

[Quixotic1]

wow!  I am blown away.  I have been looking for and suggesting CIDP to anyone who seemed likely for the last two years.  It is very unusual, but one of the tip offs is, indeed, absent reflexes!  Did you have the very elevated protein in the spinal fluid.  I bleieve that is another clue, along with the positive NCS.

And CIDP is Chronic Immune Demyelinating Polyradiculopathy - It is essentially the MS of the "Peripheral" Nervous system.  And it generally is more treatable, if not curable.

AND --- no you may not leave us, with or without permission!  Seriously.  CIDP has similarities to MS so it is one of the mimics.  You must stay - not only because you know too much, and if you left we would have to kill you, but we need you to stand as testament that all that looks like MS is not necessarily MS.  You are part of our whole package.  Besides, we have bonded to you and you wouldn't want to cause grief to so many people, now, would you????  

Mob Rules

:)) Quix

[Quixotic1]

I wasn't correcting your name for CIDP:  I was just adding the words that I learned for it.  The important point is that the "Demyelinating" is your ticket (ha ha) to staying with us - and NOT just lurking.

[trueblue06]

Oh wow, thanks for the rap, ok ok I WON'T GO!

I didn't want to anyway but thought that now I don't have MS maybe my condition would only confuse those who are on that rotten train to nowhere.

I did see on the net doing my research that CIDP was described as Chronic Immune Demyelinating Polyradiculopathy, but for some reason my Neuro, and here in Australia web sites call it "Polyneuropathy", don't ask me why that is, perhaps he told me that to simplify the very long long name.
He also called it Auto immune Ganglionopathy? Anyway, I do get it....
I'm disintegrating from the feet up!!

Yes, there is that word "demyelinating" NOT high bp, NOT my imagination but a real disease. I don't know whether to laugh or cry! He did also say that MS could still develop and that I should be watched just the same.

Quix, you would really like him, very friendly, easy to talk to, explains everything and actually bothers to do REAL neurological examinations!

We talked about a LP but he is NOT in favour of this test and feels other tests are far more telling.
When I first started talking to him he wanted a complete history, asked me all sorts of weird questions such as "Did you grow up on a farm where there was cattle?" "Where have you travelled to and did you get sick at all?"

He tells me that this disease is acquired and is not passed on by any person but rather an attack on your system such as a certain type of flu or bacterial infection can start up your immune response and muck it up. He named a certain bacteria but I can't remember which one it was. It was similar to the one that gives you stomach ulcers. I was tested for that years ago and came up negative. He said it is NOT that one but it sounded like the same name......?

It set me thinking where and when this happened and the jigsaw pieces all just went together in a second. I had to go home and think about it, my brain just couldn't focus and I had forgotten all about these trips to hospital and didn't tell him.

I was in hospital in 1999 with an unknown virus that attacked my intestinal system well, mostly my bowel and I had the most painful and terrible trotts that you could possibly imagine. This went on for 7 days, I was on morphine and stemetil so I didn't vomit and had a drip. There it is, this is what started the whole thing!

I told my Neuro and he said that would have been it for sure, it tipped my immune system over the edge and away went this rotten disease.

Also in 2004 I had the most violent reaction to a drug I had been taking for years. My body was covered in this horrible itchy rash, nearly drove me insane, I was in hospital for 3 weeks, and they finally worked out it was my bp drug! It took for ever to go and left horrible scars. Once again my immune system running amok!

I have to head for bed but will continue on tomorrow or the next day, I have a bit to do tomorrow so might not get back to you straight away.

I will be happy to share my experience with this crappy little disease, especially if it helps somebody else get off that darn train!

Hugs Quix, you are a great inspiration to me and once again thanks!

To everyone else above, hugs also, I am here to stay!

TB

[Quixotic1]

Camphylobacter jejueni?  

That has been implicated.

[CheeserNurse]

Wow---I am wondering if i have the same thing...after the 2 MRI's I have had, I do have several areas of demyelination, several small lesions within the deep white matter of my brain, and mild cerebellar tonsillar ectopia-- and the neuro I was seeing has no idea what is wrong with me, and is ruling out anything neurological, but, I know my body, and I have symptoms almost 24/7 so I am in the process of finding another neurologist. I did have salmonella poisoning when I was younger, and almost died. I've also recently had high BP that has popped out of nowhere, among MANY MANY other symptoms that I have described in detail recently on this website forum.

The #1 symptom I have is what you described, "The one symptom I wasn't aware of was how unbalanced I am with my eyes closed or trying to walk in the dark, I fall over" --I fall over EVERY time, it's called the Romberg's sign, which I have learned from nursing school.

I am so glad you were able to get a diagnosis, and wish you the best! As for me, well, I need a new neurologist!!

Blessings,
~Aleah

[rendean]

Congrats on the diagnosis! I have a question for you regarding your symptoms. Are your symptoms constant, did they ever wax and wane? Thanks.

One of my neuros suggested CIDP but another said it couldn't be because the symptoms are constant in CIDP and mine used to wax and wane...not so much anymore. I also have no reflex on my left patella but previously it was both.

Good luck with your IVIG infusions! I know others with CIDP who have been helped tremendously by the IVIG.

Rendean

[sllowe]

Hi there,

I'm finally getting to read this.  Wow, what an amazing Dr.   I do not know anything about CIDP or what it does or the treatments.  So glad you will stay with us.  

When do you go for the IVIG?  I'll order up a batch of heartfelt thoughts and prayers for ya!

Your brain must just be swarming w/so much info - I'm looking forward to hearing more about your experience w/this and what you've learned.

Don't stay away for long!
-shell

[Heather3418]

I just couldn't believe how much CIDP mimic's MS symptoms.  I am so glad that you posted all of this.  Now see how important it is for you to stay with us?  We can learn from everything that you have gone through.

I have to admit that when you first posted, I really thought this was indeed MS.  I understand now much more about neurological diseases that I know nothing about.

I am so happy that you finally know what is wrong.  Not happy that you have CIDP of course.

Please keep us updated.  I want to learn more.

Best Wishes,
Heather

[trueblue06]

Firstly, thanks all for your kind words and replies.

Quix,
I'm not sure if that is what he said, can't remember... now is that any wonder seeing it's me?
Should have asked him to write it down, he writes down everything else for me. I will be seeing him in two days so I'll find out. That could be what he said. My head was spinning already and he was running really late that day so was keen to get me on the way out the door, he already knew what he wanted to happen next. No point hanging around. I did just pull him up before I left and asked about my actual neurological symptoms like mental fog, problems multi-tasking typing letters backwards, speech etc, he said that all of these problems were most likely from CIDP as well.

Gee, I'm not a neurotic alcoholic drug junkie after all!

To Rendean,

No, that isn't right as far as I understand it, CIDP can be relapsing remitting.

The one constant symptom that does not change is the tingling / pins and needles in your feet. The main thing is it's ALWAYS in both feet, not just one. Some folk get this disease gradually, some get it all of a sudden, then it goes away then it returns. Some respond well to treatment, others get better for a while then the symptoms return. Some can be cured all together and others are left with some permanent weakness.
Another thing to note is that STRESS can make all your symptoms a lot worse.

Here is one I noticed about myself. When I get up out of a chair I always have to lean on my arm to lift my body out of the chair. I read on a medical site that this is also a sign of CIDP.....weakness being the cause.

In my case the pins and needles are constant but I have other symptoms that have been relapsing remitting. Doesn't this sound just like MS relapsing remitting? A very close mimic.
Below is how I understand the disease so far....

Has everyone heard of Guillian-Barre Syndrome?
This disease is thought to be the acute form, while CIDP is the chronic form. When someone gets GBS it attacks straight away leaving the patient sick very quickly. Mostly they recover with treatment.

CIDP happens over a much longer period of time, goes on for many years before the symptoms begin after being infected or however else you get this kicked off.

I don't think they are caused by the same virus / bacteria. I'm really not 100% sure.
I will be doing heaps of research on this little gem so will be glad to pass on what I have learned.

Nothing beats asking your own Neuro about it though, but keep in mind that as we all well know, some of them wouldn't even consider CIDP as being a cause.

My first Neuro didn't that's for sure even though all the symptoms were staring him right in the face. Perhaps if he could have just bothered to do a physical neurological exam every time I went there instead of asking me stupid questions and making equally stupid statements like "Don't go out in the sun" then perhaps I might have been diagnosed at least 2 years earlier. I have read that damage to your nerves can be permanent after 18 months.

I would personally say it is well worth asking the question if you think this could be your problem. It certainly can't hurt to ask.

I am only just learning about it now so don't quote me but I am getting the info from my guru of Neurology who is only too happy to explain everything in detail. Other than that from credible medical internet sites.

What my Neuro said that helped me understand it better was:
"It is best described as MS of your nerve endings, that is the myelin sheath is being attacked by your immune system the same way that MS attacks your brain."

This thing starts at your extremities and works it's way up...slowly.
In most folk it doesn't go away and there is no cure but in some it does.

It can attack almost any part of you but mostly causes problems with muscle weakness, lack of reflexes in your feet and legs, hands and arms, and has been known to cause either high or low bp, heat sensitivity, tiredness, facial pain, all sorts of goodies and also some problems with comprehension and other brain processes.
How weird is all of that? It can also in some folks alter the heart rhythm putting your ticker out of sync....

The Docs discovered many years ago that I have an extra heart beat, wonder if this is another marker, must ask about that one.

If anyone has read my previous posts and my endless complaints about the first Neuro I went to, you will know that he described me as presenting with a "conundrum of symptoms." Why didn't he just come out and say "She needs to see a Psychologist as I think she is nuts and making it all up." Not to mention an alcoholic and a drug addict which he inferred on several occasions. Wow, I can feel my bp rising just thinking about that man.
Yep, you dope, BUT they are all symptoms of CIDP.

If left untreated, just like MS, the outcome could be disabling.

I don't want to scare anyone but I did read that one poor chap collapsed and was paralyzed from the waist down. Nobody would believe him when he told them of his symptoms, even his wife.
She was giving him a hard time calling him lazy etc and asked him to do something strenuous then bang, down he went.
I MUST STRESS - He did recover however after Ivig therapy and lots of physiotherapy, so please, nobody is allowed to panic.

So, therefore, each person's symptoms and disease prognosis is different, NOT textbook most of the time and very hard to diagnose.

MS of the nerve endings, how weird is that? It suggests to me if your immune system is causing demyelination at your nerve endings, what then is to stop your immune system from doing the same thing in other organs and most importantly, in your brain?

To me, even though my Neuro dismissed my T2 lesions as nothing to worry about, I am thinking perhaps that they are indeed caused by CIDP. I have too many of them for my age to be caused by aging. The MRI radiologist stated quite clearly that they were demyelinating T2 lesions. NOT caused by high blood pressure or my age.

An interesting theory for me. Isn't the human body just so complex?

I just hate it when Docs try to isolate just one thing and says it can't POSSIBLY affect another part of you...Oh, so your foot hurts but that has nothing to do with your sore thigh....huh? Didn't someone tell them that EVERYTHING is connected? All my training in Massage Therapy blows that one clean out of the water. Didn't someone teach them about the Lymphatic System? Goodness me.

Anyway they are all thoughts to ponder on.....

As for my "Ivig" therapy I will know when I will be getting this probably by Tuesday this week coming. He will tell me straight away after my nerve tests.
From there, no matter what happens, he wants me to go ahead asap. My blood work has already told the story along with my "conundrum of symptoms!"

I'll keep you all up to date.

Thanks everyone, I'll catch up with you all tomorrow some time.

Hugs to all my fab friends here.

TB