From Denmark – balance, tremors – CIDP?

Welcome Ninus to the site. Many here have much experience with GBS/CIDP. I have found much help in the experience of this wonderful group.

GBS is characterized by the rapid onset of weakness and, often, paralysis of the legs, arms, breathing muscles and face. Patient’s symptoms and physical exam are sufficient to indicate the diagnosis. The rapid onset of (ascending) weakness, frequently accompanied by abnormal sensations that affect both sides of the body similarly, is common. Loss of reflexes, such as the knee jerk, are usually found. To confirm the diagnosis, a lumbar puncture to find elevated fluid protein and electrical test of nerve and muscle function may be performed.

You said that you had slightly elevated protien levels in your spinal test, what did the doctors say about this? Elevated protien levels could mean GBS, but Im not sure how hight the protien levels need to be especially since some of our members didnt have levels that were too high. GBS can take between 2 – 4 weeks to get to its worst level (and some say up to 6 weeks). I think a very important thing to keep a look out for, is if you start noticing breathing difficulty, then obviously I would suggest you get to a doctor or hospital immediately. Besides your tongue, has your face had any problems yet i.e. does one side look droopy or does your eye look ‘tired’?
Neurological illnesses are so confusing and some present the same as others, and even in GBS/CIDP so many people’s experiences are different to others. Unfortunately this confusion and uncertainty is amongst doctors as well.
Please keep us updated.

If the numbness is progressing then you need to get back to the dr’s asap. That means that your disease is progressing & could be life threatening. Some people with GBS are put on respirators because the disease starts to paralyze their lungs.

If you can’t get a dr to treat you or give you answers then you need to keep looking. If you have to, go to the ER & demand that they treat you. It’s definetly not normal to experience numbness – someone hopefully will understand that & treat you.

Print out all the info you can find on GBS & CIDP. Take it with you. Show it to the dr’s. Ask them for IVIG infusions, as that seems to be the fastest way to treat the disease. If they can’t get IVIG then ask them about oral prednisone, IV steroids such as Solumedrol, or plasmapheresis. If the tests keep coming back normal, ask them to treat you empirically, that means without an exact diagnosis but on a good hunch.

The most important advice is to get treatment asap. The sooner you get treated the better you will be.

Good luck,
Kelly

Hello, Ninus,
Sorry to hear about your symptoms and hardship, but nice to see a fellow Scandinavian. If you look up my profile – just click on my name, you can reach me directly, and we can have a little e-mail chat in our first languages – I think that would be nice – don’t you?

Ninus,

I developed GBS after an EXTREMELY stressful year at college. I really believe that stress weakens our ability to fight illness, and therefore many of us are susceptable to getting all kinds of things (just my opinion). So many of our forum family have had problems trying to convince doctors that what they were feeling wasnt in their heads, but truly something affecting them physically. Thats the problem, it is often an invisible illness if you are not totally paralyzed, but that certainly doesnt mean that there is nothing wrong with you. My question is ……. dont we know our own bodies??? We do!!! There are some people who ‘like’ being sick, and enjoy the attention, and I am starting to think that maybe there are more of those than I originally thought, because of some doctors reactions, but, believe me ……….. I REALLY do not want to feel the way I do, and I wish there were no pills or doctors in my future!

It is extremely difficult and emotionally draining trying to speak with medical professionals when they arent [I]really [/I]willing to LISTEN to exactly what you say, or dismiss what you say with an easy answer. Please keep on trying to find an answer as long as you seem to be affected, and know that we do understand what you are going through …. doubt, anger, frustration, fear, hurt, depression, just to name a few emotions you may be feeling. We are all hear to listen, and remember that the question you may not want to ask, or the story you tell, may help someone else in the same position.

hi ninus & welcome,

what was the number of your elevated protein? yes, your body was/is reacting, one cause could be gbs/cidp. how do they know you have no neurological disease? did they do an emg/ncv? what were the results? take care. be well.

gene gbs 8-99
in numbers there is strength

Ninus,

I believe that there are people on the forum that have had protien levels in the 50’s who were diagnosed with GBS.

Ninus

I see from your posts to-day that we have things in common: the intention tremor (I don’t feel seasick, though), and I’m also used to be able to solve problems. I sort of solved the problem of my disease too – but it took me five years! But of course, if it hadn’t been for the Internet and contacts I made through this forum, I would never have understood the nature of my illness. Luckily there was a doctor at Rikshospitalet in Oslo who also understood what was wrong with me, and he knew what to do about it, and gave me the right medicine\treatment, and I’m getting better all the time, now.

I would really appreciate it if you contacted me through the “private message” system – clik on my name, and then on profile, and you’ll find where to get to the “private message”!
Looking forward to hearing from you!

Ninus,

For some reason I always have to log in also. Must not be putting a cookie on our computer to remember us when we come back.

Jerimy

Ninus

I do not know if it is GBS or CIDP. What I do know is that your initial experience with symptoms and treatment or lack thereof sounds very familar.

To make a long story short, 1969 my CIDP (DIAGNOSED AND FIRST TREATED IN 2004) began with the dizzy spinning feelings that grew increasingly violent over 30 plus years until in 2005. With the infusion of IVIg the spinning on March 5, 2004 was 24/7 and the infusion stopped them confirming the CIDP diagnosis. Along the way there was the , pain and weakness, tingling, and numbness in left arm, left scapula, fatigue, weakness, shortness of breath, very short periods of temporary paralysis, in the 1970’s. No diagnosis…every test seemed normal…except VERY SLIGHT change in reflexes that were dismissed and several misdiagnosis that were used to dismiss a neurological condition.

1980’s the electric shocks began in left side of neck, left arm, fingers, left scapula and chest pains. (This one side development was not characteristic!! and it took another two years before the other side of the body began to show symptoms.) All tests were normal. A lot of tests were never run. Pain increased until they realized many years later that I had partial paralysis in the left side of neck. The in mid 80’s the numbness in feet and legs started and right arm affected. Weakness was great, loss of stamina horrible.

What I am sharing is that most all tests were normal and all kinds of things were ruled out but no one diagnosed my neurological disease until in 2000. By this time I had became very disabled and the remitting and relapsing pattern of my symptoms drove me and the doctors crazy. Only and I repeat only with the IVIg was my diagnosis confirmed as CIDP and I responded in miracle ways. (Got out of the wheelchair)! One clue here is that with the slow progressive development of my symptoms, unlike the little I know about GBS, this type of development was more characteristic of CIDP.

Finally the reason a trial of IVIg was given was an article by Dr. Norman Latov of Wells Medical College Cornell University NYC that talked about the difficulty in seeing damage to the nerves in some types of CIDP. What I have learned above all else is that these conditions present in a LARGE varity of ways and often do not fit the text book of the doctors training. The doctors need to think outside the box in looking at your case. Often neuromuscular neurologists seem to have the most knowledge here. If all your tests seem normal and they have ruled out a lot of possible causes, this is exactly the path toward the diagnosis of CIDP. It is often diagnosed by what is not wrong. Frankly with a slight or any change in protein and given your symptoms, some form of a neurological condition would be highly suspect.

Wish you well…and hope you get a diagnosis and treatment.

Eugene

The symptoms you listed are so common:

dizziness, headaches, tingling in fingers and toes, sweating, vomitting, stomach aches, difficulty in breathing

that they could be almost anything, including anxiety/depression.

CIDP typically comes with neurological blocks, high protein levels in the spinal fluid, abnormal nerve biopsies, and a positive response to IVIG. Has your neurologist done these kind of tests?

Hi Ninus

It is depressing, isn’t it? I personally would hope that you DON’T have CIDP — its not a good disease. IVIG is nasty, it makes me feel like crap, stresses me out to no end when I think about what it is, and it costs a small fortune. And, worst of all, it starts to lose its effectiveness for many after a few years.

I started this journey mid-June and my diagnosis is not fully confirmed. My proteins were very high (130+), I have complete neurological blocks, all kinds of sensory issues, respond well to IVIG, and STILL my doctor hasn’t closed the door on it being CIDP, which I’m actually grateful for. I’m having a nerve/muscle biopsy in a couple of weeks.

Helen

Ninus

For too long I let people talk me out of standing up for my self. As a result I am more disabled today than I would have been. So where it is CIDP or something else..LOOK THEM IN THE EYE..prepare your questions…list your pain levels AND symptoms with intensity and frequency…and give it to them IN WRITING.

As I said to one doctor in 1986, if it is depression or stress..help me with it as either I am NUTS given the horrible electric shocks and numbness plus…and need lots of help not bull crap and dismissal. The psychiatrist sent me back to the doctors stating that it looked like I had a neurological issue and that I was coping with it the best I could. Go figure that they still then sent me to the bone doctors and not to the neurologist. Anyway…LOOK THEM IN THE EYE…you have a medical problem…and need help….and I do not even give a hoot the diagnosis…just that you get some help with this.

Back in 1970’s I had bouts of the numb tongue and all kinds of strange stuff…so that even I was convinced that I was crazy. I remember praying that the doctors would find what was wrong and one doctor even stated, why do you want me to find something wrong…that seems sick! I replied…no you are sicker than me if you think nothing is wrong and I do not need some kind of help. He walked out … concluding that I was crazy. The easiest thing in the world is to intimidate and walk over people who are suffering but that is exactly what often happens.

So, in the middle of your symptoms you must be strong and stay focused. I have often said, that when you are sick, you must be well, in order to get better and get help.

The good news is that you are on the right track, doing your home work, learning, and finding skills to work with the doctors. So what ever the diagnosis and treatment…you are going in the direction of getting the help you deserve. Let no one side track you. Maybe you might want to put the doctors in contact with the GBS Foundation Dr. Joel Steinberg ( or the Neuropathy Association Dr. Norman Latov (212-888-8516 or the web at
[email]nol2002@med.cornell.edu[/email] for advice. They are both BRILLIANT and tops in the field.

Also there are too excellent books to educate yourself that can be obtained. One is from the Neuropathy Association at 212-972-1353 “Explaining Peripheral Neuropathy” e mail [email]info@neuropathy.org[/email] and another from the GBS/CIDP Foundation at 610-667-0131 email: [email]info@gbs-cidp.org[/email] “Gulliain Barre Syndrome” that covers CIDP and several other forms of neuropathy.

I also have copies of two articles that Dr. Latov wrote about the difficulty of diagnosing several types of these conditions that I gave to my doctors and this information was life saving for me. They are too large to attach here so if you want to do so, e mail me at [email]PRCGENE@AOL.COM[/email] and I will send copies to you in either Adobe format or Microsoft Word format…let me know which is best for you.

God bless

Eugene

[QUOTE=Ninus]Hi,
I have just spent 10 days in hospital with very few results. I suppose it started with flu in march, violent balance and vomit in April, was told it was virus on balance nerve, but recent examinations show no problems with my ears.

I have been attacked with balance problems ever since in wawes where I have been falling on my butt and taken falls on walls and door posts with my right sholder. On October 9th I fell down the stairs onto my knees. It mostly happens when I try to walk with something in my hands.

On October 15th I was admitted to hospital with pains and numbness and prickling in my right lower leg and foot, during the day it spread to the whole leg, fingers on right hand and the all arm, lips. All tests have proven normal, even hammering joints, except a slightly higher protein in the spinal test.

During the 10 days it has spread to left foot and left hand. This morning I woke up with tingling in my tongue and pain in the tip of my tongue.

I also have developped tremors. It has been there in my right hand all along only I have dismissed it. Now I get ticks/shaking my head involuntary or even the whole body, and the hands when I need small detail things done like buttons. The tremors are there all the time whether visible or not. It is related to the dissiness/balance, and I have invented my own 6 descriptions of dissiness because there are differences. Additionally I have headackes mostly on the right side which is most affected, and mostly when I try to concentrate too much to make my resisting limbs work.

I have been discharged with no sign of neorological disease but am due for check in a month where they also have answers to the rest of the tests, which I expect to be negative/normal as well.

Is there any others with similar signs? Does it should like GBS/CIDP?

Look forward to hearing from you!

Ninus from Denmark :confused:[/QUOTE]

You have similar systems that I had – which they ended dx’d me with Miller Fisher which is a variant of GBS. Although my Nero Dr. doesn’t think so because from her understanding MF starts within 5 days of a illness – I felt tingling in my feet & hands, double vision at night when I was tired – also bad balance (just thought I was clumsey). I had horrible tremors in the hospital. Supposedly with Miller Fisher only 1 out of 800,000 in the world get it – I live in Tampa, FL and went to a big hospital and was a test case – they had never had one. You have to be perstent with your Dr.s – I was lucky and got a good team they discovered it as soon as they the the spinal tap (protien count 93)
What was yours.
Sally

Ninus,
I have not checked on earlier posts but do you know about Guillain-Barré støttegruppe Danmark (GBS-dk)? Web site: [url]http://www.sitecenter.dk/gbs[/url].

Sharon Marcussen is a great source of information in Danish and English. “Alt om GBS” but also CIDP. Site URL is: [url]http://www.jsmarcussen.com/gbs/[/url]

Hope that helps you.

Dear Nina!:)

Good news is good news – as long as you feel it is conclusive. When you describe your symptoms, it seems – to me at least – that there MUST BE something wrong with your nervous system. Now there are literally hundreds of reasons why something can go wrong here. My “first” neurologist told me after he had diagnosed my ailment “Polyneuropathy”, that it was no use in trying to find the cause since it “would be like finding a needle in a hay-stack”. Well, I didn’t let him get away with that, but it really took four years for someone to come up with a hypothesis of what could be wrong, that turned out to be the right one. So don’t give up.:cool:

As far as I have understood the doctors who have performed EMGs on me, it can be seen from the speed of the nerve-signals whether there is myelin damage or not. They can also say to a certain extent what kind of disease is causing the damage, but to my experience, this analysis is not always correct.

The most common way to diagnose CIDP is by looking for elevated protein in the spinal fluid, and you say they have done this test on you with a negative result.

The only tests I’ve been through that you haven’t undergone is testing for MGUS (Monoclonal gammopathy of uncertain significance). I have had quite a few bone-marrow biopsies taken (if you are going to have that done, ask them to do it in your hip, not in your breast-bone) and I think that’s how my MGUS was determined. In addition to the MGUS, which doesn’t have to be very noticeable in itself, I have the antiMAG IgM, which means that the IgM not only marks off bacteria\virus for the macrophages to get rid of, but also a protein in the myelin-sheat. Read more about this on Kenspdn’s homepage.

Wish I could have helped you more, Nina!:(

Ninus have you had an NCV (Nerve Conduction Test) or had a spinal tap to check for elevated proteins??

Jerimy

Ninus my Neurologist put a needle in my muscle and and did something to check if it was working OK and she said it was working slower then it should. I also had the nerve test zaps. She said I am improving very much but my hands haven’t changed(maybe not related to CIDP?) I had a nerve biopsy and the nerve was OK but 18 months later I am still in pain from it and lately a different pain especially this past week it swelled up pretty good.

So only do a nerve biopsy if only very necessary.

Best of luck and Merry Christmas.

Sue

Hi Ninus,

It sounds like you are having a difficult time getting a diagnosis. (so many of us do)

I’m sorry that I hadn’t read this thread sooner – today, I was browsing the forums and when I read your thread, some of what you describe sounded faintly familiar. In October ’05, when my daughter became ill, we also had trouble getting a diagnosis, and I researched the possibilities myself. After some digging through my notes, I found a description of an acquired neuropathy, Multifocal Motor Neuropathy, that has symptoms describing some of your concerns ** asymmetrical involvement, near normal reflexes, slightly elevated protein levels ( as opposed to cidp which usually has higher levels according to what the following link describes), and tongue involvement}. I hope this information is of help to you (whether ruling in or out).

Here are links for some info:

[url]http://www.neuro.wustl.edu/neuromuscular/antibody/motpn2.htm[/url]
and
[url]http://www.neuro.wustl.edu/neuromuscular/antibody/pnimdem.html#mmn[/url]

Scroll down to the MMN section, as there is a big difference between Motor Neuropathy and Motor Neuron Syndrome. (Differential Diagnosis description towards bottom of page)
I have found the neuromuscular clinic to be very helpful in understanding some of the subtle differences in various neuropathies and their diagnosis and treatment. I hope it has useful information for you also.

Best wishes for a Merry Christmas, and a healing journey in the New Year.

cd

also saw this definition there for fasciculation–
Minipolymyoclonus: Small amplitude movements, especially of fingers & toes
(my goodness, do you think they are trying to say shaking? I have no idea!)

Ninus,
I think that there are so few CIDP cases in the Scandinavian countries for there to be viable chat groups. You could contact Claus Pedersen of the Swedish group. Phone number on the site. He lives in Norra Skåne but – han är Dansk!

I was very fortunate to find a wonderful neurologist who also put me through MRI’s, blood tests, nerve conduction tests, spinal tap and was on top of CIDP symptoms. I had hurt my back and was seeing a chiropractor and thought my initial symptoms (weakness, tingling of limbs, and finally actual falling down) were because of the chiropractic adjustments. I would have a few bad days, then a few good days, so it wasn’t a steady progression until about 4 months later when I REALLY started going downhill. By the time I got in to see a neurologist, I was almost completely paralyzed. Keep hunting for that doctor who will not only believe you, but will aggressively attack this as a partner! You need all the support you can get and having a good relationship with your doctor is the most important thing. You need to know that if you call the doctor on Monday with beginning symptoms, that by Monday afternoon that doctor has a plan! The symptoms progress too quickly to wait around. Hang in there – I was just amazed at the number of people who are in our CIDP family! Everyone wishes you the best!!!