New and have questions
AnonymousAugust 15, 2008 at 10:38 pm
Hello, I am new. I am also new to the neuropathy situation. I have a question that maybe simple, but being the newbe I really don’t know the answer.
After an EMG my neurologist has given me a diagnosis of demyelinating polyneuropathy. Is this the same as chronic inflammatory demyelinating polyneuropathy?
He also said that it was hereditery.
Does anyone know the answer?
AnonymousAugust 15, 2008 at 11:36 pm
CMT runs in my family. I have an aunt and an uncle (they are brother and sister) who have(had) CMT. I also have two cusins (they are sisters) who have CMT. I love them all. 🙂 The neurologist also tested me for that and it came back negative.
I have the test results at home and I can get to them late tomorrow. I can tell you what it says.
Right now I am in a state of confusion. I know what I am feeling is not in my head (psycho):) , but I don’t exactly understand the diagnosis.:confused:
When I do an internet search on demyelinating polyneuropathy the results that I get are CIDP. See the confusion:confused:
AnonymousAugust 16, 2008 at 1:09 am
I Googled “hereditary demyelinating polyneuropathy” and this page came up.
You might be able to find something here. I don’t have time tonight to read through the links myself.
Hope that helps.
AnonymousAugust 16, 2008 at 5:58 am
I think I would get a second opinion. Did this doctor run other test on you and is he a specialist from a good hospital? Reason asking is they told me in 1990 that they thought I had MS. Then it was not MS. Then they did a nerve biopsy that only showed Neuropathy. The same as yours. They called mine Heriditary. Mine turned out to be caused by Systemic Lupus after going to the University of PA Hospital. Now I have CIDP of unknown etology but been seeing local doctors in my area that are not equiped for rare problems. They do not have the labs or equipment in my area to diagnose me properly. Even had one doctor mess my records up saying I no longer had Lupus anymore. But a skin biopsy is telling them I still have Lupus. Sometimes if a disease is laying dormant not showing positive labs, it can cause Neuropathy and then the disease finally comes out of the woodwork like it did with me. So if the doctors are not sure they will call it Heriditary. Not alway’s meaning Heriditary…could be a disease not yet showing positive labs. Any other symptoms besides the nerve damage going on? I had no idea what Lupus was in my late 20’s. Never heard of the disease or the symptoms. And the symptoms were there the entire time. But did not realize they were all connected. Would get migraines but thought it was just a headache. Broke out in rash and thought it was an allergy at first. Upset stomachs that I thought I ate something bad. Write down every little symptom you have even if it’s mild. Joint pain, write it down. Keep a log and then let your doctors know. If they can’t give you answers, then get seen by a top notch specialist. MDA/Clinics will also be able to tell if this is Heriditary or not! Like I said! You might be in the beginning stages of a disease process and will need treatment later on when it becomes active. But making sure is the best bet. The last neurologist I saw in June was good. After suffering for quite a while because of the one doctor that did not take the time he should have with me. He thinks I have CIDP that is being caused by Systemic Lupus. Rare but it happens. So when I hear that Heriditary Neuropathy word. I know different now because of what I went through. Wish you my best and hope all goes well!
AnonymousAugust 16, 2008 at 8:20 am
First, thank you for talking with me!!!!
Other symptoms. I first went to a neurologist about 2 years ago for numb hands and had an EMG. One of the questions on the form “was does anyone in your family have muscle problems” I of course said “yes, CMT”. This answer lead the neurologist to test one of my legs just for the heck of it. The results said that I had carpel tunnel and that was it. The neurologist mentioned to me that I might want to get my legs checked into.
Now here I am two years later feeling yucky and sleeping all the time. So I switched doctors, had a whole gob of blood tests run, went to the MD clinic, got a genetic test for CMT, had a sleep study done, went to a pediatrist, now have new shoe inserts for my flat feet, more blood tests, I have the demyelinating polyneuropathy diagnosis and still feel yucky. I also don’t have any understanding of the polyneuropathy thing.
I don’t know all of the names of the blood test, but I do know I was tested for Lupis and arthritis. My husband thinks that it is a case of Lime Disease that we missed.
:confused: Symptoms: Even though I have a cpap machine I am still sleeping for long hours about 12 or more, but this is not consistent for every night. I also don’t feel like doing anything. I just want to sit around. Walking is tiring, I walk to the kitchen and have to sit down. Then I’ll have a week where I feel fine and do a bunch of work.
I think I sleep because my body is tired. Remember when you were younger and you wore tight jeans and maybe a tight shirt. Then when you take them off your legs were tired like they worked really hard. That is what my arms and legs feel like when I am tired just minus the tight clothes.
My feet hurt all the time even with the new shoe inserts.
I have some exsuma (dry skin) on my hands and ankles that comes and goes.
My ears feel, not sound, like they are stuffed with cotton, but an hearing test said they were fine.
My hair is thinning, but my thyroid and sugar are fine.
My knees have a hard time bending.
My face goes numb or tinglely every once in a while.
I think that is about all the symptoms.
My neurologist is from the MD Clinic. The test that I have had are a bunch of blood tests and an EMG.
Tell me what you think, please.:)
AnonymousAugust 16, 2008 at 10:46 am
I have had some of those symptoms. I am a GBS survivor so some of my issues are residuals. However, to keep on top of things, I am tested for Lupus, Thyroid issues, Lyme’s disease, West Nile, Diabetes (you need the fasting and the glucose test, not just blood work) Arthritis, every illness that can have neuropathic implications. One I don’t see you mention is West Nile.
Is this possible? Are you in a mosquito infested area? Worth asking about.
AnonymousAugust 16, 2008 at 12:08 pm
[QUOTE=all smiles]I have done the fasting and glucose test, but I haven’t checked on West Nile. We do have a lot of mosqitoes. My spelling is horrible.[/QUOTE]
Nobody here is going to slam you for your spelling. After all, this isn’t English class 🙂
However, if your making spelling errors bothers you as much as my making spelling errors bothers me, I suggest that you download the Google Toolbar. It has a spell checker that works with every web site on which I’ve tried it, including this one. [url]www.toolbar.google.com[/url]
AnonymousAugust 16, 2008 at 2:44 pm
It might be Heriditary but then again some of the symptoms you are having mimic me also! I have the dry skin going on right now. Lupus at times can cause hair thinning, but so can a thyroid problem and dry skin! So what I think is going on but not a doctor here! Just my personal opinion. I would still keep getting checked off and on with your doctors. If you notice it worsening or anything unusual like newer symptoms then tell your doctor about it! It took them 5 years to diagnose me with Lupus and I showed no positive labs. Something that is very typical of Lupus patients when they first start showing signs. All I had for 5 years was Neuropathy. And I knew there was more going on with me. The best site I found in regards to Neuropathy is online by typing Peripheral Nerve Diseases. It gives alot of info on Neuropathies. Saw an article once that stunned me while reading in a doctor’s office. 1 out of every 5 women will get a Rheumatological Disease that can be any of those that are consider in the Rheumatology Classifaction. Lupus, Polymyositis, Scleroderma and many more! So you could be in the beginning stages of a disease process that just has not come out of the woodwork. Something I am going through a second go round. Keep a journal, let your doctor’s read. Stay with the good doctor and don’t switch around. Especially if you feel he is doing what he can for you. He might even know something and suspect something but just does not have enough evidence to say this is Lupus or Thyroid etc! The fatigue issue is one major issue with Lupus. I thought I had cancer back then! And my labs would show nothing. You talk about aggrivating! It was major aggrivation! I wish you my best and hope they get you diagnosed soon! Good luck and any questions stay with us all in here. Alot of good advice in this site! Hugs
AnonymousAugust 16, 2008 at 6:58 pm
Thank you, I have learned a lot just in this thread.
I only had an EMG run on one leg and one arm. I have the results here with me now. I also have the results of some labs. Not all of the labs that I have had in the past 12 months.
The paper I have says: Chemistry, Gliadin IgA IgG Ab-S, IgA-S, IgG-S, Immunofixation Serum-S.
Does anyone understand the numbers on these tests? If so could you explain them to me?
AnonymousAugust 16, 2008 at 8:14 pm
I was diagnosed with CIDP in 1998, a positive diagnosis, no question about what it was. Then about three/four years ago, a new neurologist told me I have CMT and CIDP and when the test results came back negative, he told me that some forms of CMT cannot be diagnosed. If your doctor is familiar with your family history and with CMT, ask him if some forms cannot be diagnosed.
Don’t be afraid to get a second opinion, many of us do that.
AnonymousAugust 16, 2008 at 8:45 pm
I knew that there are some types of CMT that can not be diagnosed.
What I have gathered is that the doctor’s diagnosis could be right, but that I should ask about an MRI. Also a good idea to keep a journal of symptoms. Thank you for your help. I have an idea about my next step.
One last question. What is the meaning of fatigue? Is fatigue tiredness, wanting to just sit around, sleepiness and does it include aching?
AnonymousAugust 16, 2008 at 10:04 pm
The website for the Neuropathy Association (www.neuropathy.org) has the best information about Hereditary neuropathies that I have ever seen. On the home page, click hereditary neuropathy and then click the “whole article link”. It explains about all the types of Charcot-Marie-Tooth and other HMSN (Hereditary motor sensory neuropathies). Check it out. It is rather technical, but might be worth printing and taking to your doctor next visit.
I have also found useful information about GBS/CIDP on the Cleveland Clinic and Mayo websites, but have not look specifically for hereditary neuropathies there–just read through various things.
WithHope for a cure of these diseases
AnonymousAugust 17, 2008 at 10:47 am
To me, fatigue involves tiredness of muscles and joints, not necessarily just sleepiness. When I am “fatigued”, my muscles feel like they have run a million miles and just can’t manage one more step. All I want to do is just sit and not move. As to pain, even though my issues are GBS related, I frequently have residual pain so have never attributed it to fatigue. I have it even when I am not tired/fatigued but it does get worse when I overdo things.
Hope this helps. Others may define it differently. We are all unique in these illnesses.
AnonymousAugust 17, 2008 at 8:38 pm
I remember the all-body exhaustion that I experienced when I was pregnant! Wow – it was amazing, and a good night’s sleep usually helped enormously.
These days, when I have made a big effort (for me) to do something, it hits me like a truck. My muscles, nerves, brain, everything just feels like I can’t do another thing. The only thing to do is have a rest. If I keep that up, then the pain cycle will start and that is not a good thing. The only thing is, that I usually wake up the next day feeling like several trucks have hit me!
But, at the end of a day where I just poke around, I get “tired.” That is, I can still function, but my body and mind don’t have alot to give. Making dinner is about the most I can do at the end of that sort of day…
I consider fatigue to be one of the key symptoms of this disease. There is so much “noise” in our nervous systems that there isn’t lot of energy left for us to function as people.
I think that not expecting too much of yourself on any given day is key. Each of us has to work out what we can achieve on a “normal” day, say – getting up and showering, doing one activity – like some exercise, and having enough energy to make dinner (or help clean up) — without it normally causing any problems. Then, if you do those things, that day can be considered a success. Anything else you contemplate achieving has to be decided on the basis of how it might compromise your routine, and make you feel. We have to manage our own expectations as well as others.
AnonymousAugust 18, 2008 at 6:16 am
Hi Terri! What are the numbers on your labs there. I might be able to look them up for you. Ohh! I could not understand my labs too and actually called the nurse and had her explain to me what the lab test was called. Then I got online and looked the test up. High numbers would mean this possible disease and low numbers might indicate that disease. But those test are used mainly to detect something auto-immune going on and sometimes they can throw off a false negative result. Requiring to be tested again. Looking up Immunoglobulins online will explain the Ig’s!
AnonymousAugust 18, 2008 at 11:24 pm
You mentioned something that helped me when my husband and I go to the Cleveland Clinic in Ohio. His neuro never did any mri’s for head or brain. Nor was he given a fasting glucose test. He was given a fasting blood test but I think there is a difference. Right? At one time he mentioned for us to check with family doc if he had an mri and I did but it was done on his back only. Not on his head ,neck or brain. I believe they do that to check for ms, I think.
He did ask if he had ms and the neuro said no. Family doc was worried about his counts expecilly liver as he was doing the blood tests. Neuro never did them except when he had spinal tap and when on imuran (his counts went down to l.9 and then .6 (this is when he had sepsis.) We had to ask for the blood tests when he was given ivig from another doc neuro referred us to.
AnonymousAugust 18, 2008 at 11:42 pm
The chemo drug Imuran can cause the liver some damage and also sepsia! They always do labs on a frequent basis for chemo drugs especially those that can cause liver problems.
An MRI can detect MS, Collegen Vascular Diseases like Vasculitis and Brain Tumors and several other diseases. White matter lessions on the brain can mean several things. But the MRI is a very good diagnostic tool and can also rule out several diseases or suspect a disease.
Has your husband had a bone scan? The reason asking, is a friend of mine had the CIDP in a severe form like your husband. He had a benign tumor and they found out that was causing the CIDP. A year later the man was back to walking again. Using a cane and back driving. I would even ask for both test. That would rule out cancer and the diseases I listed above. I hope your husband gets well soon and I wish you good luck this year!
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