possible cipd and a few questions
AnonymousAugust 17, 2010 at 3:05 pm
Hi! I am a 35 yof and will try to briefly give you some background.
For the past 8 months or so I’ve just had some progressing neck/shoulder/arm pain mostly on the right side. I finally made an appt with a neuro specifically for a trigger point injection b/c I assumed it was all related to my tmj dysfunction and clenching my teeth all night (in spite of wearing a splint).
About 2 weeks prior to my appt (I had to wait about 3 months to get it), I noticed some tingling in my hands and feet, but didn’t think much of it b/c I also take topamax for migraines and have had this side effect before.
At the appt, the neuro did a full work up and didn’t give my neck much thought honestly. He was concerned about my lack of deep tendon reflexes, poor sensation in feet (up to knees), hands (up to elbows) and abdomen. I was not aware of any of this really. He was also concerned b/c I couldn’t really tap my foot like he wanted me to.
So he orders and EMG and that was abnormal as well as the nerve conduction test. This is all so new to me, I have no idea what it means that it was abnormal, but he said it was something to be concerned about and said there was evidence of muscle damage.
He ordered an MRI to be sure there was no disc involvement from the neck pain that may be causing some of these problems. Nothing showed on the MRI. Needless to say I did not get my trigger point injection and my neck still hurts.
Now I am looking at a spinal tap on Aug. 30th. Is this truly the only way to diagnose cidp? Or should I say the most efficient way? I read about nerve biopsy too. I certainly do not want to ignore the possibility, but this has all just come out of the blue.
I guess I just keep wondering if I just keep going along with this guys plan or should I seek out a second opinion? Will the second opinion want to get a spinal tap as well? (can you tell I am wanting to get out of this spinal tap thing?)
I have a 2 1/2 year old little boy and the thought of this progressing to what I have read it can progress to scares me to death. It is also extremely depressing b/c if it is indeed cidp, it appears treatment, etc will prevent me from having another child?
Sorry I didn’t keep this as short as I’d promised. I am just overwhelmed with the whatifs.
I appreciate any feedback you can give and please keep it is simple terms!!!
AnonymousAugust 17, 2010 at 3:40 pm
[COLOR=”Navy”]Your neuro seems to be progressing on a cautious and reasonable level. Spinal tap is nothing to worry about … it has a reputation for some reason or other. Nerve biopsies are pretty nasty and my neuro hotshot said they were unnecessary given the results of the EMGs and physical exams.
CIDP runs the gamut from very mild to rather nasty. It can remit and it can recur.
Mine is mild and stationary at the moment.
Do not fear the worst. That’s defeatist and won’t help a bit. You could plateau and stay there for years. Think positive.[/COLOR]
AnonymousAugust 18, 2010 at 12:53 am
Rocky gave you some wonderful advice. A spinal tap is really needed for diagnosis. A well trained person will do it I am sure. I would stay away from a muscle biopsy as there are complications. Please stay on this site and read, read, read. I have a 4 year old little girl that has cidp since she was 2. You can do this. Who is to say that you cannot have another baby? Keep us posted. Pamela
AnonymousAugust 18, 2010 at 2:50 am
I am glad that you found us, hopefully we can give you some support and answer some questions.
This board has been wonderful in helping me deal with my CIDP, yes it is overwhelming and confusing.
Take 1 day at a time.
The spinal tap had me scared to pieces! It isn’t all that bad…
This is one of the ways they can tell if you have CIDP, the protein levels in the spinal fluid are high.
I had the nerve biopsy done, it wasn’t fun but it really helped in my diagnosis to prove that there was de-mylatinon and re-myaltion of my nerves.
Anyhow it is very late and I could go on but I am very tired so I’ll leave it at that and when I am not so tired I’ll help you with more questions.
Not sure why you can’t have another baby, if that is really bothering you I’d ask your doc right away to help deal with the situation.
Rhonda from Canada
AnonymousAugust 18, 2010 at 11:48 am
I guess I assume with all of the medications they have me on now and then with the future treatment options that baby making may not be the safest things. I will admit that I tend to be a little ‘glass half-empty’. And I tend to go down the end of the road to the worst case scenario before I really know what’s going on.
It all just came out of the blue and as I read all of your posts and your stories and your treatments…I just can’t imagine it. But you are inspiring people and I am thankful to have found this group.
Thank you all.
AnonymousAugust 19, 2010 at 12:47 am
Sometimes when I am having a rough time I also wonder if my glass is half empty or half full…
Then I remind myself at least I have a glass…
I then have a choice to make as to if it is half full or half empty!
Sometimes it only has a couple of drops in it and other times it is overflowing.
Take care and take things 1 day at a time.
Rhonda from Canada
AnonymousAugust 19, 2010 at 1:19 am
It does sound to me like you do have CIDP, based on the numbness & tingling of both your hands & feet, loss of reflexes & lack of sensation. Also, CIDP tends to be a symmetrical illness, what happens on one side of the body happens almost the same to the other. You must have a spinal tap/lumbar puncture to see if your protein level is elevated; I had 3, they’re not that bad. I also had a sural nerve biopsy & also a surgery on my back to remove 2 nerve roots (I believe that this one was as a guinea pig for Mayo’s research.)
My neuro at the Uof MN later told me he could have dx CIDP with the spinal tap & an EMG, won’t tell you all of the testing Mayo did, my bill was over $200,000 bu the time I got done. But don’t put any of this off, it was just weeks before I had the numbness & tingling to ending up in a powerchair unable to do anything. I had a severe case, but do not take this illness lightly, as it can progress very slowly or rather quickly. Stay with us, read, learn & keep us posted…
AnonymousAugust 19, 2010 at 4:34 am
My symptoms (probably of GBS not CIDP) started in a similar way–with pain in my left arm. It actually was mainly left arm above the elbow and then in left shoulder and then neck and back of head. After this had been going on for several months, I got the hand and feet tingling and numbness. The hypothesis was that the pain in the shoulder and neck was from weakness in holding my head/body and made worse by carrying pretty heavy bags of papers and books (mainly on left side). The pain in my shoulder and neck DID go away rapidly after a trigger point injection and stopping carrying anything heavy. The rest of this stuff is still with me (better, but still with me). The time course of onset is odd for GBS and for CIDP really, but there has not been definite progression in three years and I am better.
I would guess that you carry your child around and maybe other times have tug on the neck. Try to not carry anything heavy for a few days and see if the neck is better.
I had two spinal taps and they were no big deal. You just need to curl up really well and make sure that the person doing it knows what they are doing. You can ask for medication to help you relax if this might help you.
The spinal tap and EMG are the best ways to diagnosis CIDP. A nerve biopsy is sometimes done, but lots of places do not recommend this unless the other tests do not confirm the diagnosis.
Treatment for CIDP does not need to affect fertility and most do not.
There is another neurologic process called DeVics or neuromyelitis optica that they thought about in me because of the neck pain (and because of an oddity on the neck MRI). this is a central nervous system process and more similar to MS than to CIDP. One can see changes on MRI of the spine. A blood test can help to confirm it because of a specific antibody. It is rare and also it would be unusual for pain to be mainly one sided as it is for you and it would be unusual to have a peripheral neuropathy like distribution of numbness (below elbows and knees). One would expect more likely numbness below the level of the problem in the spinal cord. I do not say this to add to worry, just to emphasize that the MRI and spinal tap are important. It sounds like your neurologist is proceeding in an appropriate manner in looking at all of this.
It is scarey. Take each day at a time and try to not get overwhelmed by worry. There are a lot of variations in severity and manifestations. Lots and lots of people have milder forms.
WithHope for a cure of these diseases
AnonymousAugust 19, 2010 at 5:13 am
Some suggestions for the lumbar puncture (spinal tap) to make it less annoying…
Don’t drink coffee that day, but drink plenty of fluids to keep hydrated. Try a cup of chamomile tea before hand to help relax you.
Plan to remain stationary, lying down, for at least 2 hours afterwards (if possible). If you have to pop in your car soon after, try to lie down in the back seat.
Don’t plan any long trips for at least 48 hours afterwards – specifically, don’t fly, drive up to the mountains, or otherwise dramatically change your elevation.
Bring a personal music device if you have one so you can listen to relaxing music while waiting – rather than sitting in the quiet getting nervous… if they let you go ahead and listen while they are doing the procedure – it’s better than listening to them chatting about what they are going to do. If your doctors are averse to personal music devices then bring some earplugs so you can’t hear them talking – you can pretend you are floating on a raft in the ocean instead. 😀
And do try not to worry too much about it – being worried and tensing up will just make your muscles sore and it doesn’t really help prepare you. 🙂
Worst case scenario is that you will have a headache for a few days… that only happened to me because I took an 8 hour trip the next day up to the mountains… cuz nobody told me not to :rolleyes: otherwise you will have mild local pain, maybe some soreness, but it sounds much scarier than it really is. Also keep in mind that a few people with CIDP do not have elevated protein in their spinal fluid but it’s important to do the procedure so you don’t spend worthless months trying to get a diagnosis without a lumbar puncture when you could be getting treatment instead. 😉
August 19, 2010 at 10:45 am
In hindsite I think the same thing happened to me. For about a year I had some pain but mostly tingleing in my neck and sholders. My Doctor ordered a stress test and heart workup. Everything was OK so I delt with it. Latter Pain started in my bladder and other places and then got worse. After the usual MRI and spinal It was determined CIDP. I have been on monthlY IVIG for 11/2 years and doing fairly well. The worst part of all this was not knowing and confusion. It took me a year to find this forum and now I deal better with things. Get the test and then start treatments if necessary and start the process of healing.Gene
AnonymousAugust 19, 2010 at 11:32 am
I can’t tell you how much better I feel after reading these posts.
I had (ignorantly) googled “how painful is a spinal tap” and got all sorts of scary answers and paranoias in my head. Hearing good and positive results from folks on here I feel I can trust has helped to resolve much of that fear.
I do plan to take a little ativan that day however! 😀
Also, very good to hear confirmation that this particular doctor seems to be on the right tract. As I mentioned, when I made my initial appt it was for a simple trigger point injection for neck pain and all of this took me completely off guard.
In the event that the spinal tap shows normal protein levels what is the next step? Blood work so far has been normal so up to this point we are just working with the abnormal EMG and nerve conduction tests along with absent reflexes, and clinical symptoms like the weakness, numbness, pain.
Would one go on to a nerve biopsy or just assume it is cidp and move on with treatment?
That opens up a a whole other slew of questions…
Is there a file somewhere for a newbie on how to know the best course of treatments and all? I see posts regarding brands of IVIG being better/worse, dosages, rates of infusion, it is all greek to me. Is there a ‘treatment for dummies’ thread somewhere so you don’t have to repeat it all for me?
Thank you again for all of your support!!! I will certainly let you know once I get results from the spinal tap which is scheduled for Aug. 30th.
As a side note: I have made a concerted effort to not carry my toddler much at all and I quit using a purse of any kind or carrying bags on my shoulder. The neck pain continues to be quite bad. I keep attributing it to my tmj and clenching my teeth, but should I keep pressing for a trigger point injection just so I can get some relief from at least one issue?
AnonymousAugust 19, 2010 at 3:13 pm
hi I dont have CIDP I used to frequent this site back when I thought cidp was my ailment. my neuropathy was caused by malfunctioning bile ducts causing liver damage which was a complication of primary sjogrens but I have had 5 spinal taps over the years due to the misdiagnosis of GBS in the beginning and I really wouldnt worry about this proceedure. make sure the radiologist does it cuz they are alot kinder then the neurologists. sounds like your emg is quite telling though. what ever it is I too am 35 and have run the gammot of symptoms and my advice is to not stress. that stress hormone is your body’s version of prednisone called cortisol and so I advise you to save it so your body can use it to alkalize and keep that immune system in line.
AnonymousAugust 19, 2010 at 5:43 pm
Hi Erin – yes i can imagine how ‘blown away’ you were when you go in for a shot and get sent home with all this to process!!!
A lot of good info has already been passed onto you. I was your age, with my youngest also just 2 when i was thrown into the CIDP realm. That was 3 yrs ago now – hard to believe – but yes you soooo should have the lumber puncture done – it will give you accurate results- and you will then be able to head along the right treatment track from there.
There is also no point worrying about the unkown – it may never happen. Enjoy your precious child – they can often be the best medicine!!!!!!!!!!!
If it all turns to custard – you will find ways to cope – and for this you will just become even stronger!!!
all the best
AnonymousAugust 20, 2010 at 6:22 am
If your spinal fluid does not show elevated protein your doctor may go ahead and treat for CIDP anyway, or he may run more blood tests. There are some very specific blood tests that indicate variants of CIDP and/or other causes of peripheral neuropathy such as CMT. It’s usually best to find out exactly what you have before doing treatment – however, in some cases, the treatment is part of the diagnosis. For example, if your doctor decides to try a trial run of IVIg to see if you improve… and you do improve on IVIg… then you are more likely to have some kind of autoimmune disease as opposed to CMT which is hereditary which can allow him to narrow down specifically what you have and determine the best course of treatment.
As for “treatment protocol for dummies” … well we’re all dummies in that regard. There are some standard things doctors try but it all depends on your own body and how it responds. Just as each of us has unique symptoms, we also respond uniquely to treatment. Some people need no regular treatment, only when they relapse… others respond well to steroids, IVIg, plasmapheresis and so on. This is something you and your doctor will have to figure out together and you will need to take good notes and have some patience during the process.
The most important thing you can take into this process is HOPE. Do not imprison yourself in your fears of what MAY happen… what your life MAY be like… what you MAY be missing in the future… it’s poison to your body and mind and seriously interferes with you getting the most out of life right this very minute. 🙂
AnonymousAugust 20, 2010 at 12:32 pm
My daughter was 5 when she got her last spinal tap. She had 3 of them in a span of 12 months. She was wide awake for the last one & she handled it really well. If she can do it, so can you!
You’ve received a lot of really good advice from the others but I thought hearing that a 5 year could do it would help you go into it without worrying too much.
AnonymousAugust 20, 2010 at 3:13 pm
Yes, I certainly should feel better hearing that a sweet little 5 year old handled the spinal tap well.
I have to say God bless you momma. As a mommy to a 2 1/2 year old I just cannot even imagine him being the one who is sick. It is making me cry right here at my computer and breaks my heart. You must be so so strong and makes the fact that you would be so supportive to me even more special.
AnonymousAugust 22, 2010 at 7:34 pm
So nice to meet you. Keep coming back. I don’t know what I would of done
without this forum and all the wisdom and guidance and love these people
gave me and still give me. Be prepared for anything! My symptoms changed,
my emotions changed, my attitudes changed, my diet changed (for the better) all I can say is reach out to family, friends and especially us, we are
here for YOU.
AnonymousAugust 23, 2010 at 7:34 pm
okay, so what is the difference between a spinal tap and a lumbar puncture?
I kept thinking I would be doing the test where you have to curl up and that helps them get the right spot. Apparently I will be laying flat on my stomach and this is some sort of CT guided lumbar puncture. Is this anything I need to be more concerned about? It just presents a completely different picture in my head than what I had been mentally preparing for.
Appreciate any feedback.
August 23, 2010 at 8:09 pm
they both are the same thing. I imagine it sounds like a radiologist or anestheasiologist will be doing yours guided by a scope (thats what it sounds like you are describing) If that is it, you are the better off because they can see exactly where they are going. My son had one when he was 9. The best advice I can think of is to remain flat after the procedure to avoid pain until the area seals up. Ask for tylenol or what ever you take for migranes because you may get one. We did on our first one, but not our second. When you go home, make sure to stay in bed the remainder of the day. This will most likely be a sure diagnosis for you, most people do have an elevated protein result. There are some exceptions, but most do.
As for treatment for dummies as you put it, different people respond differently to different ivig brands, some have different clinical results, others have bad reactions to one brand over the other. Probably the most important thing regarding brands, would be to find out the name that they start you on and ask for the same brand each time. Unless of course you react poorly to it. There is a standard protocol of 2g/kg over 4-5 days for a loading dose. Some docs do a load once only and move right to a maint. dose, 1g/kg. Others do a couple of loads and go from there. eaqch persons plan is different, the ivig has a full life of 42 days, but the disease process is different for everyone and someone else might use it quicker. We did loads for a year, on a monthly basis. My son would get so sick and miss sooooo much school. We now are on maint. doses and I spread it over 2 weeks. The other thing to remember is infussion rates. There is a standard formula but not all docs or infussion centers follow it. You can have the procedure done at home, after the initial dose. Fluids and pre meds are very helpful. If you would like to talk, you can check your private messages and I will leave you my number.
August 24, 2010 at 10:25 am
For 59 years I didn’t hardly have a headache so I went in this with no medical information. They too used a scan for the radiologist to find the point . retrys are not what you want. My only complaint was the doctor waited 30 seconds between to shot to deaded and the procedure. Must have been in a hurry. I stayed in the hospital 4 hours after and layed on the couch the next day to avoid a headache but luckly didn’t get one. 2-3 days later got the call with a dianosis and was happy to find out something after 12 other doctors guessing. To date my IVIG has gone well and no adverse issues. Premedication and rate of infussion is important as previous stated. The first load dose the next day I felt I had flu like symptions. Since then they have slowed down the rate and the next day I feel good. They give me IV benedril and I catch up on my nap for five hours and listen to a Ipod. very easy once you get the hang of it. Wished I didn’t have to but I still remember how bad I felt prior to dianosis. Ask questions as you go through this and most good medical personell will help. However they do tend to explaine things possible and it seems worse then it is.If you read the side effects of any medicine you probably won’t take them.Gene
AnonymousAugust 24, 2010 at 12:37 pm
The lumbar puncture was not the most pleasant way to spend an afternoon, but I also had the delight have having a nerve/muscle biopsy.
Keep your head up, there are so many variations of this disease that you might be on the lucky side and have a very slow progression.
After the procedure you may have a headache, and feel a little stiff, but will feel back to your “normal” within 24-48 hrs!
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