I finally understand
-
-
March 22, 2008 at 5:50 am
My Neurologist was finally able to explain this whole GBS vs. CIDP vs. MFV vs. MADSAM etc. thing in a way that I could understand. I have had a great deal of confusion about my symptoms because they really don’t fit with the typical model of any of these demyelinating diseases (e.g. CIDP typically doesn’t have cranial nerve or autonomic nerve involvement, much less a continually elevated body temperature for 2 years.) So I asked the doctor about it and explained that I see a diversity of neurological opinions on the forum – some docs say cranial and autonomic is not part of CIDP, others say the opposite – first off he says “it depends on how many GBS/CIDP cases your neurologist has seen.” He says he sees a great deal of variety in CIDP cases and explained it to me like this:
There are a large variety of different symptoms associated with GBS/CIDP, people can fall within a range between GBS/MFV/CIDP because they don’t really know why it attacks certain nerves in some people and other nerves in other people or why the speed of the disease is different etc. So an individual can fall anywhere within this range of symptoms and when people fall into a range with similar symptoms to enough people then it gets categorized as GBS or CIDP or MFV or whatever. Just because I don’t fall into a common category doesn’t mean those symptoms aren’t part of my version of the disease. So yes, cranial and autonomic nerve involvement CAN be part of CIDP because people have different responses to an autoimmune attack. Incidently, he believes that the elevated body temperature is part of the autonomic nervous system attack, rather than the inflammation caused by my disease – much less the thousands of other diseases we’ve tested me for – which is a relief.
OK, that’s the short version – I always end up getting appointments at the end of the day when I’m so exhausted I can barely hold my head up. Ugh Plus we got distracted in the middle of the conversation wherein he was telling me about a version that only attacks the axon (more common in Asia than here) and I asked “well how does it reach the axon? through the nodes?” and we got off on a conversation about how that could happen… going in through the nodes vs. peeling back the myelin at the nodes etc. etc. My doctor is very intelligent and most of the time he can explain things to me in a way I can understand – if I don’t understand it’s only because I’m too tired. I think this is one of the advantages of having a neurologist who is an MD/PhD – he also does research on myelin and so I think he is pretty up to date on the latest research.
I asked him about the forgetfulness, he was fairly noncommittal here and ordered another round of MRIs on my head and spine to make sure there isn’t anything going on there. Also he thinks my extreme light sensitivity might be due to meningitis from the IVIg so since I’m getting my treatment next week I’m going to get the MRI afterwards so they can see if my meninges are inflammed. I’m not sure about this but it certainly wouldn’t surprise me.
I also asked him if I could take the fish oil – another interesting conversation which I will make short by saying he says it won’t hurt me if I don’t go overboard but it hasn’t been proven to help either. He says Omega-3 is an anti-oxidant rather than an anti-inflammatory. I have no opinion on this but I bought a bottle and I’m going to test it out this weekend.
And last but certainly not least – despite the recent attacks on my cranial and autonomic nerves – MY REFLEXES ARE BACK IN ALL FOUR LIMBS!!! Woo Hoo He says now that they are back it’s time to get me into physical therapy to try to recondition some of my lazy limbs (my words there, not his). He wasn’t terribly encouraging about the cranial and autonomic nerves getting better soon (if at all) but he was very encouraging about my mobility and while he cautioned me to take it easy and only do as much as I could without straining, he did believe I was in a place where I could actually start building muscle again. PSYCH! You know it’s always hard to tell when you are in a “use it or lose it” situation vs. a “use it AND lose it” situation (like w/ my eyes right now) so I’m looking forward to [U]seeing [/U]some progress somewhere. (pun intended)
Well I can barely see the screen so I apologize if there are typos or if I’m leaving things out. Have a great weekend everybody, be safe, be grateful, and be silly for a little while. :p
Julie
-
March 22, 2008 at 7:02 am
Hi Julie,
We must have been talking to our Neuro’s around the same time about CIDP.
As you know (like you) I have CIDP and cranial nerve involvement as well. Interestingly, my Neuro told me it is not common to have both as CIDP tends to affect the longest nerves first (legs) and for example the nerves of the eye aren’t as long (obviously), especially the ones that move the eyeballs around – But can happen.
My cranial nerves were affected about the same time as my legs when I had my first bad attack years ago.
It’s great your reflexes are back!!
I often refer to this disease as ambiguous…
Best wishes,
Kazza -
March 22, 2008 at 7:13 am
Thanks to Julie and Kazza for you discussion of CIDP ambiguities. It is amazing how many things can and do go on with those of us with these autoimmune conditions. The key piece of advise I was given as I started with physical activity was listen to your body. That was opposite to all I had been taught “No pain, No gain.”
-
March 22, 2008 at 7:48 am
Cleo,
Isnt it a wonderful sort of ‘relief’ once it is explained so that one can understand it? I really am glad that he took the time to share that with you. Is this your Neuro in Baltimore, the same one who has ‘studied’ under Dr. Cornblath?
-
March 22, 2008 at 10:17 am
Reflexes?!?!?!
YAY!
It means that there is some healing going on. Keeping my fingers crossed that the MRI’s come out ok.
About the eyes….
The cranial nerve involvement, especially concerning the eyes, is pretty easy (I think) to explain. This is my take on it after researching & researching & researching. And speaking with Emily’s eye dr.
The nerves for the eyes are short. They are probably one of the shortest nerves in your body, since your eyeballs have such a small range of movement. I think this makes them an easy target for those extremely pushy CIDP antibodies. Since the nerves are so small I think it takes longer for them to start to heal. They aren’t as tough & sturdy as your leg muscles. For most people with eye involvement their eyes will start to weaken 10-14 days before their limbs are affected. I think this is more evidence that the eye nerves are weaker than the other nerves.
From what I’ve read, and there isn’t much info to go on, most people with opthamalopegia (eye involvement) end up having to get a combo of treatments at the same time. Most of what I read said that people needed PP & IVIG to get their eyes better.
Since Emily was 4 when she was dx’d & her dr doesn’t believe in doing PP on kids, our option was the high dose IVIG. It took 2 consecutive months of 200 grams of IVIG (20 grams per infusion on a 43 lb child) to make any sort of headway with eye repair.
I hope I explained that ok.
Kelly -
March 22, 2008 at 1:10 pm
Thanks for the info. Helped clear up some items. Esp. now that I’m having pins and needles in the back of my head and blurry vision. i see md on mon.
-
March 22, 2008 at 5:56 pm
Julie, thanks for taking the time to get all that info down. Good thread, I hope the discussion continues. You are fortunate to have such a good Doc.
But sometimes the posts by members here make things a lot easier to understand than when sitting in the Dr. office under the pressure of trying to get everything right.
Thanks again,
JayDee -
March 22, 2008 at 9:44 pm
In thinking about eyes, since this seems to bring a lot of frustration to me and to my neurologist–me because it is so important to see especially if I can not move like I used to do and to him because it does not fit into what this disease is supposed to act like, I have wondered something different. I think that eyes muscles are not weaker or more affected than other muscles, it just is that people have incredible sensitivity to movement in the eyes. This means that even a little damage can make a big functional difference. There is no other muscle set for which the two sides have to work together so very closely. If there is a little damage on one side and a little more damage on the others, it is really hard for the eyes to track together or respond alike. It is like having a fine instrument calibrated with two fine springs and then having rust or damage throw off the matching of the two so they no longer work together like they used to. The brain likes things to be constant especially with eyes. Our condition is further complicated because during the course of the day or over days, the balance may shift further so there is not a steady new way to which the brain can adjust (like when you get new glasses).
I also wanted to say that in thinking about this and other autoimmune diseases, there are many times different protein (antigens) which are attacked on the myelin sheath or nerves. The distribution of proteins is different in different nerves and this may be part of the reason that some people has involvement of some areas of nerves and others not. Some of us have a bad antibody that attachs a protein found in peripheral nerves and in the cranial nerves. Others may have an autoimmune antibody against peripheral nerves and autonomic nerves, etc. The course/severity of the disease probably depends on the antigen, the amount of antibody (titer), the stimulus to produce the abnormal antibody, our bodies inflammatory response to the presence of antibody, and our sensitivity to the changes.
All of what you say Julie fits for this as well and it seems true in this variable disease.
With Hope for cure of these diseases and more understanding so that we do not feel crazy because of them before that. -
March 23, 2008 at 3:17 am
Hello everyone! Thanks for all the responses – I didn’t realize there were so many of us out there that were needing this type of information…
Kazza – wow, we’re in sync again! It’s weird how things seem to connect with us… my cranial nerves started halfway through my peripheral nerves. The damage went up my right side to my face – across to the left side of my face, and down to the left leg – sort of a U-turn approach but the time it took to go from my right foot to the right side of my face was about 3 months. Once it hit my face things went very quickly, hours to days, before it crossed to the other side and paralyzed the rest of my body.
JFitzen – I’m usually pretty good about listening to my body but I also know I tend to have a lazy streak about exercise so I have to push myself somewhat or I don’t make progress. I’m going back to Melanie, the physical therapist who first noticed the foot drop and started this whole journey two years ago. She still calls me every few months to see how I’m doing and I can’t wait to tell her I’ve been approved to come back for more torture. 😀
Ali – yes, this is the same doctor that studied under Dr. Cornblath and YES it’s a relief to have something finally make sense. I don’t know why it took me so long to “get it” but maybe that’s a sign I’m getting better too.
Kelly – hopefully I won’t have to do the PP along with IVIg – in this recent visit he mentioned putting me back on Cellcept in addition to the IVIg but we decided to wait until May to see how the new schedule of every 3 weeks affects me. We had an interesting discussion that started with him saying “you can’t stay on IVIg forever” to which I said “why not” thus leading to a discussion wherein I realized once again what awesome health insurance we have. Even within Aetna my doctor says he has never heard of anyone with no lifetime maximum. My husband says it’s because we’ve been paying 30% more to get the premium for the last 15 years or so – whoa nelly is THAT paying off now! I know we’re paying for the insurance but I still feel incredibly lucky because I know how hard it is for some of you to get IVIg.
Beth – I get those feelings a lot, it feels like bees stinging my head. Interestingly my neuro also says those are signs of aseptic meningitis, which I would never have suspected. I should find out by next week whether it’s my cranial nerves going haywire (and that’s all) or if I’m also getting aseptic meningitis from the IVIg (which is what he thinks is happening). It’s not fun either way – feels like my head is being tasered.
JayDee – I agree, I am fortunate to have such a good doctor, not only that but I like him too, he is funny! It took me nearly 2 years and 14 doctors to get where I am today and I’ve got to thank my family for continuing to push me for a diagnosis long after I was ready to throw in the towel.
WithHope – YES! That’s what I’ve been trying to explain to my doctor and others! I’ve become acutely aware of every microscopic movement of my eyes because it HURTS and I had no idea how much your eyeballs actually move around during an average day. Let’s not even try to watch TV because it will wear my eyes out in 45 minutes flat, reading is a little better but I discovered italics are impossible for me to read as my eye wants to follow the line of the letter and when it’s curved it’s more work to read it. And the daily variation that you explained to eloquently is exactly what I find so frustrating about this disease, I can be “ok” in the morning and by noon I can’t see anymore.
Well there is nothing like having a pack of people with similar symptoms to drag me back towards feeling like I’m not so crazy afterall (well…ok, maybe a little nuts). I really appreciate all the support and feedback I get from this forum. I head back to my fanatastic doc in May so if there are any questions you all want me to ask please let me know – and then remind me a dozen times so I don’t forget. 😉
Happy Easter everyone, may this day bring you joy and laughter that lasts through your dark days.
Julie
-
March 24, 2008 at 10:28 pm
Julie,
I read your message about the omega 3,6.9. I take 100% pure flaxseed oil made by a company called Barleens, I take two tablespoons eveyday and It was the only thing that stopped the burning and stabbing and that eletric shock pain that I would get sometime. I also noticed that If I go a couple of days without taking it, I start to feel the symptoms again. This Is when I realized that It helped me. Omega 3,6,9 and FLaxseed are the same. Thats what I was told.
I hope you see some improvement.
-
March 25, 2008 at 12:16 pm
Hemp hearts are also a good source of Omega’s. They are quite tasty and to me are like eating sunflower seeds albeit a bit smaller. I took them for some time but then I had an autoimmune reaction to them and would break out in hives every time I ate them…Am now afraid to eat them again due to this. I think I will try the flaxseed…
-
April 1, 2008 at 10:43 pm
I also have blurry vision and my neuro has suggested I may want to see a neuro eye specialist. I said no. I can’t stand floresant lights”’ Turn them off if I’m in an exam room till the doctor comes in.
My IVIG is being paid through the state employees pharmacy and the cost for home health nurses is tacked on. There is no lifetime limit either.I just happen to be talking to one of the IVIG providers for this region and he said to try using my pharmacy benefits.Had been using Blue Cross that did cost me deductibles-the pharmacy for IVIG has none.
Who knew teaching school would one day give me this incredible option. Thank goodness the IVIG is covered for CIDP. -
April 2, 2008 at 3:58 am
limekat,
the light sensitivity my neuro says is probably meningitis from the IVIg – I can’t stand flourescent lights either (or that canned synthetic stuff they call music, I turn that off too) Do you notice it’s worse after you get IVIg treatment?
Have you ever noticed how many things make noise? Lights, for one thing, flourescent lights make this bitter little cracking noise, whereas these 60 watt yellow bug lights we use are a softer, lower hum. The computer monitor, upstairs, makes the loudest noise for it’s size – amazingly I can hear it through the floor. Most defintely my hearing has improved now that my vision is not as good.
All these fun little things to experience with meningitis… who knew?
I saw this video the other day about a young man who had lost his eyes to cancer when he was three – he somehow learned to echolocate, yes, that’s right, echolocate LIKE A BAT. He clicks his tongue against the roof of his mouth and he hears pictures of what is going on around him. I watched him ride a bike and a skateboard in that video, not to mention make scrambled eggs. He walked into the interview room, make a few clicks and said “there is a couch over there, a radio, a television” etc. etc. he went right to the couch and sat down – no hesitation – in a room he’d never been in before that moment. It’s not that he can see “a little bit” – he has no eyes anymore, they took them out, his brain just learned a different way to see things.
Aside from being a really inspiring story, my point is our brains are more adaptable than I think we’ll ever be able to measure or test and I think that no matter what long term difficulties I might have I’ll find a way to adapt to them. I only hope I can do it with as good an attitude as that young man had.
me
-
April 3, 2008 at 1:38 am
I was told the eyes/tissue area absorb so much fluid from infusions that it swells-causing migraines and eye pain.I was getting it in 5% solution-the large baggie. We changed it to 10% solution and the less amount of fluid make a huge difference-interesting. I had been having terrible migraines and they went away.I get one bag of electrolyte fluids added on to each of the 3 days of IVIG and makes me feel better.
I don’t see any other medicine/s besides IVIG that helps. My neuro not one for PP but I do also take Methotrexate pills 12 times a month. I asked for it-my idea to maybe help slow the progression and hopefully stretch out time between infusions. We tried to go to every 3 weeks May 2007 but the summer heat knocked me flat.
Today when I ventured out the sunshine blinded me. Blurry vision makes it all seem so strange in stores and then I think I might be acting weird myself. Perception off and affects my balance. Need some tinted glasses for stores.
I enjoy the late night quiet time to read.
-
