Hello 23 year old, probable CIDP
AnonymousJuly 2, 2009 at 10:49 am
I was getting antsy waiting to post.
I just had my spinal tap on Monday but my neurologist isn’t giving me the results of it until I go back to neurology in 2 weeks.
She wants yet another EMG. (I’ve already had 2)
My nerve damage type is demyelinating with a secondary axonal loss.
Its sensory-motor mixed.
I do have a conduction block. However, its of a sensory nerve. (not sure if it needs to be of a motor nerve?)
NE who.. They want to repeat the EMG now at a later date. The last one was a year ago.
I’m told what I have is likely an acquired and autoimmune process.
And since my damage is demyelinating.. the only thing I can have is CIDP.
Just waiting on tests to confirm, but they will.
I’ve already been ruled out for everything else under the sun. (all the blood tests for things like Anti-Mag, and B-12, diabetes, etc, etc)
AnonymousJuly 2, 2009 at 12:23 pm
Hi & welcome!
The dr making you wait 2 weeks for a test result is a load of crap, in my opinion. I would call the dr back, explain to him/her that you are very antsy & anxious & you need some answers. Ask her to please give you the results over the phone, so you can start researching your possible illness and be a better informed patient for her.
If your EMG showed a conduction block a year ago & demyelination a year ago, what have the dr’s done to treat it?
There are variants of CIDP which are more sensory than motor. If you Google “sensory CIDP” I’m sure some great links will come up.
PS, remember that dr’s work for YOU. Sometimes I think they forget that.
AnonymousJuly 2, 2009 at 12:55 pm
A year ago I wasn’t being affected as negatively.
I had good strength.
It was just showing on my EMG.. which baffled the doctors.
I did have some weakness in my arms which caused me to drop items.
And other than that, I was alright.
They didn’t want to do the spinal or a nerve biopsy at that time, so they didn’t do any treatment for me in that year.
They said if I progressed that I would have to do those tests, and then I would get on treatment.
Well, time goes on and I lose sensation totally in my legs from my calves down.
I start tripping and get a foot drop.. difficulty walking.
I decide that its time to proceed with testing.
However, I went to a new neurologist, as the other ones treated me like a nutter (probably because I am a young female)
So I’m still not on any treatment, but thankfully I have all the testing from previous that I could show this neurologist so I didn’t have to go in circles.
So we picked up with the spinal tap, and she wants another EMG since its been a year.
You can’t start with a treatment until you really have a diagnosis.. esp. since I am on medicaid.
She said she may get a nerve biopsy depending on what the findings are.
But I know based on what I’ve read that the tests are going in the order of CIDP.
And that my sxs and EMG pattern fit.
So I’ve just got to wait a little longer. .. which I guess whatever.
My parents weren’t thrilled either. (about the waiting for the results)
IDK if I can just get the results of the spinal over the phone?
How long does it take??
I am going to try calling the clinic and asking. I’m sure they are already fed up with me, cause I got my testing moved up.
I’m tired of progressing and not being on treatment. I think they don’t understand what its like being young and scared cause I’ve lost so much of what I had before this hit.
AnonymousJuly 2, 2009 at 2:14 pm
They called me back.
Apparently they had to send something out to texas.. which is why the results aren’t back yet.
She said that they won’t have the results until I go in, in 2 weeks.
Its a bummer it takes so long, but I suppose when you send things out it takes longer.
AnonymousJuly 2, 2009 at 4:19 pm
EMG results are instantaneous. The dr doing the test can read it right at the time it’s been done. There is no reason to wait for EMG test results.
My daughter has had 3 EMG’s & the most we had to wait was 1 hour while one dr spoke with another.
Did they take blood? That may be the hold up on the test results but they should still be able to discuss the EMG results with you.
Don’t worry about being a pain to the dr’s. That’s what it takes sometimes. Trust me…I’ve been through it with my daughter.
AnonymousJuly 2, 2009 at 7:51 pm
Yes, they drew blood.
Is that what had to be sent to texas?
My next EMG isn’t until next monday.
Then I go back to neurology to follow up on whatever the results are of the testing.
Because by then they should have everything back from Texas.
(so they should have a clear picture of whats going on for certain)
Sorry you had to go through this with your daughter.
How long from her initial symptoms did it take for you all to get her diagnosed?
AnonymousJuly 2, 2009 at 7:59 pm
She experienced symptoms in Sept. after having her immunizations. We took her to the dr many times & were told it was just growing pains. She had a flu shot in November & was hospitalized on Dec 27th, 2005 & dx’d with GBS on Dec. 28th.
I thought you were waiting on the EMG results, sorry.
It sounds like your dr is doing things in the right order to get a firm diagnosis. It will be important to have those blood test results. They probably did some genetic testing & that’s what is taking so long.
AnonymousJuly 2, 2009 at 8:40 pm
I hope you get your dx soon. My son, Ryan who is 20 and a college student was dx in Dec 2008 with CIDP. we are on our second neuro and soon to see our 3rd. He is scared about his future with this disease also. It’s very scary not knowing what kind of life you will have. Ryan is currently in a wheelchair he is hoping and praying its just temporary. He is also on meidcaid and he also gets social security and disability checks every month. He had to prove he could no longer work his job and the doctora had to .write letters and send documentation of his illness. So it helps.nHe is looking at getting a car and having hand controls put on it so he can drive. he needs the hand control since he can’t use his feet. It will allow him to have some more independence so he doesn’t have to rely on me so much. I don’t mind but he does. Then he is hoping to be able to go back to school this fall. That will be harder cuz I will worry about him. he will be almost 2 hours away. But we still have a few months left before we have to worry about it.
well i just wanted to say welcome and I hope you get your answers soon. Ryan gets on here alot and reads the posts maybe now that there are some young adults on here he will post himself.
AnonymousJuly 4, 2009 at 9:18 am
There is another neuropathy called Charcot Marie Toothe (CMT) that makes a similar presentation. There is a marker on a gene, and they may have wanted a genetic test to see if it is CMT or not. They can rule it out with the genetic test.
As for CIDP, my presentation was very slow at first. I knew something was wrong, but nobody could confirm it for a while. Like you, I went through a period of years before treatment. Then, the Dr.s took a cautious treatment plan, because I wasn’t too bad.
THIS PART IS MY OPINION.
After diagnosis the treatment was equal to the level of physical damage. I still had a lot of function, only sensory loss. They started me out with prednisone and an immunosuppressant.
I wonder, if they hit me hard with IVIG and an aggressive treatment THEN, would I be so bad NOW.
I don’t mean to scare you, but you sound like you are starting like I did, and I really don’t like where I am now (10 years later.) I have always wondered about how I would be if my treatment were more aggressive.
I hope it doesn’t turn out to be CIDP, but if it is, get good aggressive treatment from the start.
AnonymousJuly 5, 2009 at 6:49 pm
Thank you Dick, and no need to worry about scaring me any more.
I’m pretty sure my doctors are certain its CIDP, as they consistantly use the words “acquired” and “autoimmune”.. never have they said “hereditary”.
I know my nerve damage is demyelinating with a secondary axonal loss, so given all that.. I should only be able to have CIDP?
GBS would have come and gone, and I have something chronic.
When this first hit I had difficulty breathing. My friend had avian flu, and I had the flu shot.. (I get the flu shot every year, as I am a nursing student.)
I had gotten a respiratory something or other.. and they couldn’t figure out what.
It wasn’t pneumonia. But I did need steroids. I was placed on prednisone.
But a whole field of my lungs was so bad they couldn’t hear.
Then after the prednisone stopped the weakness started. I was so weak I couldn’t chew my food.
I couldn’t lift my arms.
It hit my upper body first.
It eventually subsided and I’m grateful for that.. but I did have some dropping of soda on my laptop.
Then after a few months I started to have leg problems. (after the summer months, which means it was after my check up in Mayo)
I had to rely on carts to get through walmart.
I couldn’t lift my foot to slip off my shoe.
I began tripping. Walking oddly.
Losing total sensation from the calf down. (I literally would beat on my leg, and feel nothing)
So, I told my GP about it, and she said I had to go back to neurology.
I hadn’t gone back because they treated me like a nutter.
She referred me to a different neurologist.
The new neuro did the basic testing, and told me I had a foot drop.
I have no reflex response in my feet.
Other than that, I check out alright.
She sheduled me to come back a few months out again… .. irritating.
So I called back, and got them to move it forward about a couple weeks.
Then got them to do the testing in a different order. (at first they were going to do the EMG, then spinal.. but it would have taken over a month)
Sorry for the ramble.
Sometimes I feel like I have the worlds most retarded neurologists working for me, and other times, IDK.
I just want to start treatment already, and possibly get some function back.
AnonymousJuly 5, 2009 at 10:07 pm
I haven’t posted in a while, but I still lurk so I can keep tabs on everyone.
I’ve been experiencing CIDP symptoms for a few years now. My legs are getting progressively weaker and my balance is getting worse (make that nonexistent). I’ve gone through two neurologists and I’m now on my third. The experiences I’ve had with neurologists may or may not be the norm, but I’ll gladly share them with you.
I think it’s safe to say that most neurologists have little or no experience with CIDP or any of the other autoimmune conditions. Many neurologists don’t believe patients when they describe the weakness and the pain and the loss of balance. If they do believe patients when they present with symptoms of CIDP, they will follow the standard IVIg textbook treatment of 400 mg/kg. Unfortunately, this dosage is far to low for many patients. If the standard dosage doesn’t have a beneficial effect, they’re at a loss as to what to do next.
Unfortunately, many patients’ experiences mimic mine, and they go for years without getting proper treatment. Meanwhile, the nerve damage progresses to the point where that damage may be permanent.
I’ve had one office visit with my new neurologist, and it was like a breath of fresh air. He listened to what I had to say and expressed amazement that my previous physicians were reluctant to increase the IVIg dosage to the current recommended level, which is 1 gm/kg for two successive days. Since I weigh 220 lbs., that dosage would be 100 gms of IgG per day. The highest dosage that my previous physician would administer was 60 gms per day.
He’s also ordered new NCV and EMG studies. His position is that since I haven’t responded to prednisone, or IVIg, or Plasma Exchange, we need to determine whether I have CIDP or some other autoimmune condition.
So, now that I’ve laid the groundwork, here’s my point. My new neurologist is Dr. John England. Dr. England is Professor and Head of Neurology at the LSU Medical School in New Orleans. He specializes in CIDP. I wasted three years dealing with neurologists who either don’t see many CIDP cases or who don’t believe in aggressive treatment, before I found Dr. England. If I had found him three years ago, perhaps I wouldn’t need my cane and/or AFOs and perhaps I could now walk more than 100 yards without stopping to rest.
I was referred to Dr. England by Dr. Richard Lewis, with Wayne State University, in Detroit. I located Dr. Lewis through recommendations of others on this forum. When I contacted him by email and asked if he’d accept me as a patient, he responded within 30 minutes. In his email response, he said he’d be glad to accept me as a patient, but he asked why I’d want to come all the way to Detroit when two of the best CIDP experts in the country were at LSU Medical School, just a three hour drive from me. To cut to the bottom line, I immediately contacted Dr. England’s office and was able to set up an appointment about 30 days later.
If your current neurologist treats few cases of CIDP and/or if he/she isn’t willing to listen to you and to begin aggressively treating your condition, you need to locate someone who deals with this stuff on a daily basis. I found Dr. Lewis to be very responsive. If your medical insurance and your situation will permit, perhaps you can go to see him in Detroit. If not, then I suggest that you could contact him and ask him to recommend a neurologist in your area. His email address is [EMAIL=”email@example.com”]firstname.lastname@example.org[/EMAIL]
Don’t delay!! Best wishes to you.
July 5, 2009 at 10:11 pm
CMT DOES NOT have to be hereditary. There can be a spontaneous mutation. It presents the same way as cidp physically as well, it looks the same on a ncv/emg. A spinal or nerve biopsy would be difinative proof. Kevin had this as his second dx, his first dx was that it was psychological, until he kept getting worse and we went to another doc. The 2nd doc said CMT because of the similar presentation. I was sure thats what it was and researched it, however, I discovered that it would take years to get to the state Kevin was, unable to walk or use hands. These symptoms happened over about 4 weeks. I may be behind in reading your posts, so excuse me if I am in error, but the blood tests do take longer, but the MRI should have been that day or the next if the radiologist saw something. Incidentally, I would agree with you it is more cidp than cmt. as cmt has no relief from steroids or anything and you stated temporary relief from steroids. I would say the flu shot was your culprit. Being a nursing student, if you get ivig, any immunizations in the future would not work because of ivig. Good luck, keep us posted.
Dawn Kevies mom
AnonymousJuly 6, 2009 at 9:40 am
Dawn Kevies mom- I’ve been on steroids 2 times over the year. Oddly for different things.
Once I had a really bad outbreak of hives.
And once for the breathing problem.
Both times after the taper ended I had what I would call a really bad flare of problems.
Which makes me leary to want steroids with tapers again, cause I get better, but get worse again once the steroids stop.
Thank you for the advice.
Most if not all of the neurologists here are general neuro’s.
I think they are doing alright as far as testing goes. But I am not sure if they have much experience as far as CIDP.
If not I have Mayo in Rochester 3 hours away. (a drive, but, at least it isn’t toooo far)
It sounds as though I have what is known as “multifocal CIDP” from the way it presented its self.
With it starting in the arms and then going into the legs.
Today is my 3rd EMG. (I guess I could almost call it my 4th since my 2nd they were in disbelief and did 2 that day)
Next week monday I go back to neurology. I really hope we will have everything needed to make the diagnosis then so that I don’t need a nerve biopsy.
AnonymousJuly 6, 2009 at 10:48 pm
My spinal tap came back normal.. so now I have to go onto the nerve biopsy.
I just had an EMG done today (the 3rd I’ve had).. I had yet another nerve have a conduction block.
(now the sural and peroneal, not sure about the rest of the results, those are just the ones I was able to pick up on myself)
I asked to have the results mailed to me.
I keep record of my EMG’s and other testing.
AnonymousJuly 13, 2009 at 2:08 pm
Since I don’t want to take up more space on the forum, I am going to write in here.
On Saturday I forgot who someone was. (their name)
I’ve known this person for 2 years.
She was a teacher of mine. The head of the nursing dept. at my college.
I got in a large arguement over a grade of mine.. I know her, and she knows me.
And yet, for the life of me I can not remember her name, either first or last.
Its not as though she is just a passing face that it was ok to forget her name.
Its so odd.
I’ve been having a lot of numbness in my right foot.
And a lot of nerve pain through my rear end and through my leg since the spinal tap.
Currently my hands are getting that feeling like they’ve been asleep and are starting to wake up.
(being bitten by “sharks”.. perhaps its called “pins and needles” sensation)
I was reading up on a page that said if you have symptoms and an EMG is bad enought that you don’t need “supportive” criteria like a spinal tap and nerve biopsy.
I don’t know if that is actually true.
I don’t know the results of my latest EMG because my doctor failed to type out the dictation as she was on call last week.
But, when I called to say that I didn’t want the nerve biopsy they said that I may not need it.
That the doctor wanted to sit and discuss the EMG and spinal tap results with me.
.. well, the spinal was clear, I know that.
So, something must be up with the EMG.
And I know the EMG was not normal, because she told me that there was definate slowing, and there was no response of the sural nerve and at least 1 other nerve.
So.. thats 2 non-responsives, and slowing.
However, I’m sensory greater than motor.
I’m trying not to give up hope that I will get my diagnosis and will be able to start treatment soon.
Wednesday I go back to neuro.. hopefully I will finally get some good news.
AnonymousJuly 13, 2009 at 6:32 pm
Love your screen name, its pretty much covers what alot of us go through gettting that darn confirmed diagnosis. Read over your post, Sure sounds like
CIDP. The spinal taps take 6 or 7 days to get a final culture result, Like Kelly said EMG’s are instant and should be done by the Neuro not a tech.
Back to the spinal tap, mine was neg. I have multifocal CIDP. Hitting the criteria is important, in my case I had lots of focal blockages, was negative on HNPP(heredetary Neuropathy with tendancy for pressure palsey). Spots on the brain. I had negative or worsening with Prednisone. They waited til
I was sliding down the steps on my butt before they did a trial of IVIG. That worked.
The doctors always seem wooshey washey until they see you in severe distress. If left untreated CIDP can put a hurtin on ya. If it affects breathing, and the autonomic system, It can put you down.
We all become disgusted when we see the same things happening with others that happened with us. So with that said. I wish you luck. If you don’t trust your Doctor, get another but I suggest not having too many doctors involved at once, it slows things down.–Tim–
You must be logged in to reply to this topic.