From Denmark – balance, tremors – CIDP?
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AnonymousOctober 29, 2006 at 4:44 am
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:
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AnonymousOctober 29, 2006 at 8:43 am
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.
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AnonymousOctober 29, 2006 at 10:46 am
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. -
AnonymousOctober 29, 2006 at 12:25 pm
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 -
AnonymousOctober 29, 2006 at 1:02 pm
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? -
AnonymousOctober 29, 2006 at 3:54 pm
Thank you for responding!
I have normal reflexes, no visible facial symtoms, and in response to my question about the significance of the slightly elevated proteins I was told that my body was reacting against something, but it was like a person with high fewer asking why, so they could not tell what caused it.
I only learned about GBS/CIDP when I got home from hospital and a friend called and said it was a possiblity from my symptoms. It has been both encouraging to read about and depressing because I don’t really know what it is. There are so many deviations.
I have been very tired today and fear tomorrow when I have to ask my GP about a sick leave. How can I ask that when nothing has been found out? But I have no choice as I am very weak and need to train the strength back.
At the hospital it seemed as if they doubted that I was ill at all, and some suggested that it might be a physical reaction caused by longtime stress.
I have been under a lot of stress for the last two years, but I have a hard time beleiving that the pain and numbness should be caused by stress. Besides it is a very depressing thought, and I have really been trying to do something about it. Only three weeks ago I was line dancing and enjoying it.
Ninus :confused:
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AnonymousOctober 29, 2006 at 4:53 pm
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.
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AnonymousOctober 29, 2006 at 7:46 pm
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 -
AnonymousOctober 30, 2006 at 1:50 am
I have been through CT scan, MRI scan, blood samples and spiral sample. The proteins were 0,69 if that says anything. They ordered VEP and MEP but cancelled those as the MRI showed nothing wrong. I am not sure about what the abbreviations stand for or whether they are the same as you just mentioned. There are too many abbreviations for normal people to understand! They have been testing me for MS or DS, but the MRI scan was normal.
Rulled out is MS, DS, anurisms, tumors, bacterial infection, borelia, blood clot in the leg or elsewhere, and ear problems.
The remaining tests not yet available are for vitamine E, wheat allergy, virus, and early cancer anywhere in the body.
I was thinking about Parkinson as I shake and sometimes can’t get my legs or hands to move, but I have not asked specifically about it yet, and I only seem to shake visibly when I want to do something not when I am resting. I feel the seasickness all the time and I am eating pills against seasickness, they don’t affect the shaking/tremors, but I have more peace inside and don’t get so tired, though I should from the pills. Mystery!
I do feel anger, frustration, depression, and joy of being home now able to access the internet. I am used to being able to do something about anything, I am a real problem solver normally, and now I don’t know what to do except exercise my strength back.
Ninus :confused:
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AnonymousOctober 30, 2006 at 2:47 pm
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! -
AnonymousOctober 31, 2006 at 6:10 am
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
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AnonymousOctober 31, 2006 at 10:53 am
Eugene,
Thank you – I think. Your story stunned me.
It seems so like mine, I immediately went into my files and pulled out my earlier questions to my doctor back to 2004 and there it was – dizziness, headaches, tingling in fingers and toes, sweating, vomitting, stomach aches, difficulty in breathing – though I am well treated on asthma meds. I have been dismissed too often. Lately though my doctor has done some tests of different kinds, but they always turn out normal. However this is the first time that it is so bad that I got really scared and went to hospital. It is the first time that someone suggested it could be GBS/CIDP. I just made a sheet of paper with questions for the next interview at the hospital. Suggestions are very welcome!Thank you all for your answers and your support, it means a lot to me – more than words can say. It helps me take back control and ask questions.
Love to all of you
Ninus -
AnonymousOctober 31, 2006 at 7:38 pm
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?
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AnonymousNovember 1, 2006 at 4:19 am
Yes, you are right the listed symptoms are so common that they could be almost anything, including anxiety/depression.
However this time I have tremors and difficulty in making my hands and feet move, numbness in my entire right side and left foot and hand and my tongue as well. The only thing the doctors have found is a higher protein i my spinal fluid test.
These tests: abnormal nerve biopsies, and a positive response to IVIG,
have [U]not[/U] been done by my neurologist.I am waiting for answer to these tests: vitamine E, Ciliac allergy, virus, and early cancer anywhere in the body.
It can be anything until a diagnosis has been given, which is depressing to wait for. And from other stories on this forum it can be a long wait.
Ninus :confused:
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AnonymousNovember 1, 2006 at 6:49 am
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
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AnonymousNovember 1, 2006 at 8:59 am
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
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AnonymousNovember 1, 2006 at 4:44 pm
[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 -
AnonymousNovember 6, 2006 at 3:52 pm
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.
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AnonymousNovember 6, 2006 at 5:02 pm
kenspdn,
Yes, thank you I do know the sites and I have been reading a lot of the information on All about Guillain-Barre. I have also discovered the UK site.
However, in Denmark there is not an active internet forum where I can meet others.
I am very greatful for all the answers that I have got in this forum from all of you responding. It helped me so I don’t feel so alone and lost.
Thank you all!
Ninus
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AnonymousDecember 20, 2006 at 8:32 am
Hi again to you all – HELP NEEDED PLEASE!
[QUOTE=Ninus]I have been through CT scan, MRI scan, blood samples and spiral sample. The proteins were 0,69.
Rulled out is MS, DS, anurisms, tumors, bacterial infection, borelia, blood clot in the leg or elsewhere, and ear vertigo problems. [/QUOTE]
UPDATE:
My earlier bloodwork shoved a small increase in TSH Thyroid gland, but a repeat was normal. (My mother had a thyroid disease, and it is hereditary). There was also a small increase in two types of white blood cells. I don’t know what that means, but it was all dismissed by the doctors.Vitamine E deficiency, ciliac discease, virus tested for and early cancer were ruled out.
A month ago I visited my neuro. I have kept a diary on all my symptoms, which I showed to the neuro. He especially noted my tongue feeling different. When he examined me, he found uncertain finger movements and uncertain touch-to-the-nose movements as well as my left foot being unable to feel cold things. Reflexes are normal. He suspects a sensory polyneuropathy and has sent me to have an EMG, which was this morning.
Todays EMG test – pads and an electrical buzz, not needles – is normal too, according to the doctor doing it. He said that I have no nerve infection.
I have had good news all along. Almost every test is normal. I have slowly trained my muscles back into working order, and they work when I am not too tired.
I still have sensory oddness all over (tingling, burning, prickling, numbness, sensitivity to heat), especially in the skin, feet and hands. The electrical buzz from EMG was not far form my normal symptoms, including the cramping. My balance is still off, and I have difficulty in walking (it is like on ice scates). When trying to stand on my heals, I loose my balance. I have an illusory body tilt to the left, and head tics and hand tremors when I am tired. Main problem right now is fatigue. I want to do more than my body wants to do.
Would the EMG test show myelin damage?
Now what?
What other tests are available?
Please help me understand this!
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AnonymousDecember 20, 2006 at 2:27 pm
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!:(
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AnonymousDecember 20, 2006 at 3:02 pm
[QUOTE=Allaug]
Good news is good news – as long as you feel it is conclusive.The most common way to diagnose CIDP is by looking for elevated protein in the spinal fluid.
[/QUOTE]Dear Allaug,
Thank you for being there!
Do I feel the test is conclusive?
I am not convinced. The thing is that the doctor performing the EMG did not communicate, and he did not respond well to my questions. So I will have to get a copy of the journal to see what he has written. Or wait for my next appointment to ask the neuro. Waiting time again!Only objective positive find so far [U]is[/U] elevated protein in the spinal fluid.
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AnonymousDecember 24, 2006 at 4:28 am
Ninus,
If it is of any help to read about CIDP in Swedish you can find it here.
[url]http://www.gbssverige.com/?DocumentID=30&Lang=sv&Show=(4)&showsid=yes&main=C IDP[/url]You will need to click up the succeeding sections at the sub-menu on the left. Hej och tack! Ken Sawyer.
__________________
IgA PDN – a relation of CIDP. web site [url]www.pdn-info.co.uk[/url] Also [url]www.nervepainandweather.co.uk[/url]
A CIDP contact person in UK.
Originally Posted by kenspdnKen, tak for the link to the Swedish home page. Do you have a chat forum in Swedish somewhere?
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AnonymousDecember 24, 2006 at 4:30 am
Diagnosis of CIDP
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Ninus,There are several sets of specific criteria used to diagnose CIDP. Each of the sets is a combination of clinical presentation (how you feel and what the doctor observes with his/her various sensory and motor tests), nerve conduction velocity (NCV) and electromyography (EMG) tests, cerebrospinal fluid evaluation (CSF, obtained with a lumbar puncture), and a sural nerve biopsy. Not all of these tests are used in each set, and each set has a somewhat different set of results that must be observed before deciding that the disease is CIDP.
The clinical presentation involves you telling the doctor about your symptoms. These should generally include muscle weakness and sensory problems, usually starting as “pins and needles” or numbness. The distribution is usually symmetric (about equal left and right), with the sensory issues being in the hands and feet most (distal), and with the weakness being distal and proximal. The doctor will try various strength tests (“Push against my hand.” “Try to pull me towards you.” “Stand up from this chair; now that one.”), various perception tests (a pin, looking for pin and needles feeling;, a tuning fork, looking for ability to feel vibration; and possibly a feather), and propriaception tests (“Touch your nose, now my finger, now your nose.” and “Stand with your feet together and your eyes closed.”) The doctor will check reflexes as well. Ther are usually slow, but they might be normal, depending on just what is affected.
NCV uses electrodes applied to the skin and a probe to apply an electrical shock, which can feel like anything from a mild buzz up to a really strong convulsion. EMG uses needle electrodes that penetrate the skin and into the muscle. NCV can show demyelination by a slower than normal velocity for the shock pulse to reach the electrodes. As I have not an EMG, I don’t know about how it helps in the diagnosis, but Wikipedia has an article about it. CSF evaluation may show elevated proteins, but not always. The nerve biopsy will probably show demyelination directly, but it is possible that it might not.
Of the various components used to help arrive at a diagnosis, the clincial presentation and NCV are probably the most important. An elevated protein level is further confirmation, but all it really points to is that an inflammatory process is happening.
The test you recently had was an NCV, not an EMG. Since your NCV test was normal, it seems less likely that what you have is GBS or CIDP. However, your symptoms and the elevated CSF protein shows something is going on. It seems like your symptoms are all sensory or tremors. Do you have muscle weakness, such as difficulty open a bottle or standing up from a chair? I realize it may be difficult to tell if you have tremors that interfere, but you probably can tell the difference. There are lots of types of neuropathy out there; in these fora, we focus on GBS or CIDP because it is pretty clear that is what we have. Allaug and Eugene are right: keep pushing your neurologist to provide a diagnosis. Unfortunately, you also have to remember that in about one quarter to one third of patients with neuropathy, no cause can be found (Norman Latov, September/October 2006 Neurology Now).
By the way, VEP is visual evoked potential; MEP is motor evoked potential. VEP is a test in which you look at a shifting pattern and the electrical signal that it stimulates in your brain is measured. MEP is a test in which the electrical signal at your muscles is recorded after your brain is stimulated. See Wikipedia’s article on “Evoked Potentials” for more details.
Godspeed in your search for a diagnosis and a treatment.
MarkEns -
AnonymousDecember 24, 2006 at 4:48 am
[B]Administrator[/B], thank you for giving me a chance to find and catch up on my thread.
[B]MarkEns[/B], thank you for your elaborate answer. Thank God or the administrator, I was able to retrieve it from the old backup. I did have muscle weakness, when I got home from hospital, I could hardly do anything due to weak muscles. I have trained my muscles slowly into working order, but I still have trouble sometimes opening jars and lids – how did you know 🙂 I still have trouble walking as my legs will sometimes give in and I cannot trust my right leg, but I walk slowly and concentrated. Thank you for your explanations.
Thank you all for being there! Merry Christmas and happy holidays!
[IMG]http://i33.photobucket.com/albums/d92/kelly__wood/santa11.gif[/IMG]
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AnonymousDecember 24, 2006 at 9:02 am
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
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AnonymousDecember 24, 2006 at 12:48 pm
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!) -
AnonymousDecember 26, 2006 at 4:04 pm
Thank you for your replies and suggestions.
I am compiling a list of questions for my neuro to answer and tests to be taken. I wish to be a bit ahead so I can argue in case it becomes necessary. He already knows that I am seeking information on the internet.
Do you know whether supplements will help?
Magnesium, selenium, or other things like dog rose?
I know that supplements may only postpone the illness, but I am about to get desperate enough to try anything which will work while I wait between appointments.
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AnonymousDecember 26, 2006 at 6:50 pm
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!!!
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AnonymousDecember 28, 2006 at 8:10 am
Hello all, thank you for your input!
Here is an update on what else I have discovered:
These are apparently the tests to be taken, if a thyroid disease is suspected.
TSH
T3 free
T4 free
TPO – thyroid peroxides antibodies, TPO (antimicrosomal antibodies)
TG – thyroglobulin antibodies
Hashi’s is FNA (fine needle aspiration) and Grave’s would be TSI which is a lab test (Thyroid Stimulating Immunoglobulin.)ANA (Anti-nuclear antibodies)
Low adrenal function – adrenal fatigue
Cortisol test = urine and saliva tests
ACTH Stimulation TestIf any of you have a thyroid disease, did you discover the chat forum for Thyroid diseases: [url]http://thyroidhost.proboards30.com/index.cgi[/url]
Some of the members of the above chat forum say that the TSH should be below 2.0 for some persons, especially those with high antibodies. Read: Changing guidelines for thyroid test levels: [url]http://thyroidhost.proboards30.com/index.cgi?board=Newpeople&action=display&thread=1164236493[/url]
What I found especially interesting, was what foods not to eat when having problems with a thyroid disease. They correspond closely with the foods, to which I have been tested intolerant.
Read: [url]http://www.whfoods.com/genpage.php?tname=george&dbid=47[/url]
Read: [url]http://www.freewebs.com/thyroid/goitrogens.htm[/url]On adrenal fatigue read:
[url]http://www.project-aware.org/Resource/articlearchives/adrenalfatigue.shtml[/url]Suzanne has written to me that an EMG can be a false negative, if the symptoms are patchy.
I will continue searching for answers 😉
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