4 New questions
AnonymousJune 8, 2009 at 3:28 pm
So I saw my neuro again. Last time I saw him was 2 months ago. At that time he took me off of IVIg. In my world (ie my daily life) since then I have not gotten weaker…which is good. I still carry a cane but don’t always use it. I still use my arms to help me go up stairs. Can walk without AFO’s but if I use them it is like walking normally and I can walk a lot with them with no adverse effects.
In my Dr’s “strength testing” opinion…He says I am cycling between myelinating and demyelinating. I can’t figure out when I am demyelinating (heck I am doing more things now than ever). That sounds weird I am sure. So for my first question…is it possible to demyelinate one day and then hours later/or a day later remyelinate to the strength of previous days?
I don’t feel like I am demyelinating, and just wonder if the Dr is trying extra hard to give the diagnosis that he feels I have. My LP last year was normal, my EMG (both) were abnormal yet not pointing to nor against demyelination. He is still pushing for a nerve biopsy, yet in the beginning he said it would most likely not show anything as I have had this “disease” for too many years. I opted out due to a low percentage of possible results…plus I feel my foot just fine in that area and don’t want to lose more feeling than I have to. He says no one is using skin biopsies to diagnose something like this. My second question is do Dr’s use skin Biopsies? He is now mentioning chemo after a biopsy. So my third question is: Pred and IVIg have made no remarkable impact on me, if I am not declining (ie demyelinating) is chemo still given?
His strength tests still bug me. In jan he said I was walking the best he has ever seen…yet he said that I was no better than last July. 2 months ago he said that I was no stronger than july. This month he says I am no stronger than last July (but he did say my left leg was stronger than previously). The difference between last July and now: Last july I could barely walk from the car to the store with a cane, nor could I walk in my yard by myself. Now I can walk without a cane although I carry just in case as my walking is still gaited. I can walk the yard just fine without a cane now, plus walk up and down the small “hills”…even carrying groceries.
Last question. I have inflammation in my neck and lower back. I also have bulging discs in these areas although they are not herniated. If my discs were herniated then all of my symptoms would be explained as the areas affected on me correspond to the areas where my discs are bulging now. Anyway I asked the Dr for low dose naltrexone. He knows nothing abt it and looks up regular dose naltrexone and poo poos the idea. LDN has virtually no side effects. Instead he gives me Celebrex…which has a ton of side effects and can cause heart issues. Is anyone using LDN for inflammation and if so how is it working?
Thank you so much for reading my long winded questions!!
June 8, 2009 at 8:56 pm
Is your dx cidp or gbs? If it is cidp and you are not on any treatments currently with no noticeale symptoms, it might be possible that you are in remission. Or perhaps your flares are not close,ie monthly. Some people have new demylienations weekly, monthly, 6 months, yearly. everyone is different. About your comment demylienating hour to hour or one day yes one day no, I would say that is not possible. It might feel like something is going on because of residuals and maybe over doing it one day to the next. A nerve biopsy would for sure show if in fact you do have a demylienating process no matter how long you have had the disease, kind of like the rings on a tree do not disappear with each year of growth. Each layer of onion bulbing would represent how many demylienations and re-mylienations there were with each episode. It would be a for sure answer if you do or do not have cidp. Skin biopsies check something else with the nerves.
i cannot remember right now, but check out Angel2nd class, as she has a post regarding the procedure. Cheryl is really nice, if you pm her about it, I am sure she would fill you in. Just my mom opinion, but before I would take “chemo” drugs, I would be sure of the dx. I wonder if it was gbs and you are just getting better slowly since ivig, steroids have not made a difference and it appears that your ncv/emg although abnormal according to the doc has not gotten worse. It sounds like your doc DOES want to find the proper dx, you have that on your side!! Good luck!
Dawn Kevies mom
AnonymousJune 9, 2009 at 1:14 am
Hi Kristin! What I think you are saying about the Demylinating and Remylinating . The best I can explain is that you have a certain type of neuropathy that regenerates itself. This is how I started out years ago when I was not fully diagnosed with Lupus. I went in for an EMG and the first one showed nerve damage like MS and was not that great of a result. Next time I went in and my EMG result showed improvements. That was with the Lupus and Neuropathy back then. I did the same thing where I got all bad off and could not walk and then a year later improved. What it sounds like to me is that you have nerves that are showing more damage in other areas that are demylinating and then some of the nerves you have that were bad at one time ave regenerated! So you have a slow progression type of nerve damage going on. Kristin! The nerve biopsy is really not that bad. I didn’t even notice a numbness in my leg after they did the biopsy! Where they do it at does not effecting your walking once you are healed up which usually takes about 6 weeks. Small tiny scar that will fade out in due time. That biopsy would rule out alot of diseases. Stopping labs you would not need. Skin biopsies are mainly only used at a Dermatologist and that would be to rule out diseases like Lupus, Scleroderma, Acute Intermittent Porphyria! They would show small fiber neuropathies! It sounds like the treatment you had last year did do the job making you get better! But you are still showing a neuropathy that is still doing damage but in a minor way where you don’t notice it.
When my nerve damage starts demylinating, I can tell right off the bat! Due to having this stinken mess so many years! I will get numbness and tingling in that area. Back then when it was mild doing damage, the best way I can describe it would be where my hand or leg would feel like it was falling asleep and did not want to wake up. Would shake it around and then the feeling would come back. And I would have a spell of feeling more tired that day! Then the next day I would feel okay! When you were having to use a cane back then, you have a pretty bad demylinating process going on. Causing muscle weakness and that was most likely snnsory/motor nerve going on. Later on though this stuff I had went into CNS Lupus and then it went into CIDP! But I strongly would advise that nerve biopsy! You might want to wait but if you get a second attack of this stuff, then get that nerve biopsy! Hope my advise helped! Hugs my friend! Glad to see you walking!
AnonymousJune 9, 2009 at 1:19 am
You have probably millions of nerves. Generally you are probably remyelinating and demyelinating somewhere all of the time. There is just too many nerves. Each nerve has Schwann cells nearby. These are something like repair shops. they constantly remyelinate your nerves. Meanwhile the immune system is busy tearing them down. When you have a “relapse”, the attackers are getting way ahead of the fixers. When you are recovering, there is much less attack, and much more repair. When you get IVIG, you introduce many more “good guys”, which take out the bad guys, and give you the opportunity to recover.
2.) Biopsy, Why? If you have a diagnosis, what would be the purpose? To go through something invasive to tell you that you have a chronic demyelinating polyneuropathy, which you already know, seems to have no purpose. If the purpose is to tell you that you are having a relapse, can’t you already tell by your symptoms? I am not convinced that it could tell you how severe the relapse is by looking at one small biopsied area.
3.) Strength testing. Big can of worms here for me. The Dr. has to have some kind of measuring method to determine functionality. But to say that he can have a definitive measure of function by hand squeezes, leg lifts, ankl;e flexing, etc. seems a little presumptious to me. but they have to have a measure. If you have hand dysfunction, your finger strength will suffer. If you are suffering from foot-drop, your ankle strength will suffer, and so on. The cannot measure stamina adequatley, they must rely on your description as you talk to them. That is why I totally recommend writing down your functions and dysfunctions so that you can tell them to him.
4.) Low back issues, There would be pain and dysfunction, but you can tell the difference. They would poke you with the pin and needle to see where you have feeling and not. Generally the low back will cause problems from the back down while the neuropathy will present symptoms from the foot up. As far as those treatments, or the specific drug you mentioned, I am not familiar with it.
Getting back to the first ??? Don’t get totally wrapped up with the de… and re… and what levels of each. Look at your symptoms. These signals will tell you when it is coming on. Then you can prepare. Maybe a particular muscle group begins to tire and fatigue quickly, then symptoms accelerate. On you get pins and needles in your calf, or whatever. Learn to read your body, and you will be ahead of these pesky relapses.
AnonymousJune 9, 2009 at 4:07 pm
My Dr is “convinced” that it is CIDP, although the tests don’t confirm. I do bring lists to him and question his view of my results but he diagnoses based off of his notes and his “tests”. I have had no symptoms of decline since last April (I didn’t start Pred until June nor IVIg until Sept)…yet he claims I am having a cyclical periods of recovery and decline. I just don’t get it I guess. I personally think that if I have CIDP that I am in remission and have been since April.
Whereas I do believe that he is working hard to diagnose me, I worry that he is trying to hard to make it one thing (CIDP) when it could be something else.
I still feel like I am on a different page than the Dr, but I know that neuros don’t always think the same way as the rest of us. He is obviously seeing something that I am not, but unfortunately he either isn’t explaining so I understand or perhaps he isn’t understanding what I am saying.
I see him in another 3 months. No IVIg, no pred since March. Will be trying celebrex, if insurance approves and right now it isn’t, for the neck inflammation.
I do realize it is a good thing that I have not gotten worse especially while not on any IVIg or Pred.
Thank you very much for responding abt info on skin biopsies and sureal nerve biopsy.
AnonymousJune 9, 2009 at 4:24 pm
Hi Kristen –
Have you looked into getting another opinion from another neuro. Sometimes having a fresh set of eyes look over your tests will lead to the right diagnosis.
You might also find with the 2nd opinion neuro that you communicate better with each other.
AnonymousJune 9, 2009 at 5:09 pm
This is my 4th neuro. First two saw me years ago when symptoms first started…they both determined that nothing was wrong with me even though I had severe tingling, weakness, severe pain, etc. Neuro #3 thought I had CIDP and since his specialty was MS, he sent me to the CIDP expert that he knew (current neuro). I am thinking of trying my mom’s friends neuro. This neuro diagnose her friend with GBS when no one else could figure it out.
I have seen a ton of dr’s and almost all have said that nothing was wrong with me…it makes one apathetic abt seeing another Dr.
AnonymousJune 10, 2009 at 7:40 am
Hey Kristin! You sound like me back in the late 80’s when I first started getting sick with Lupus. I had all the classical symptoms back then and nerve damage was one of them that would come and go. I went to my regular doctor and he sent me to my first Neuro! That doctor was convinced I had MS. But then when all the testing came back he told me I didn’t have MS and that I did have something going on but didn’t know what! Told me I had an auto immune disorder of something and might get diagnosed a year later or die of the disease and still never know!
It took me 5 long years going from Neuro to Neuro and doctor to doctor to finally get a diagnoses. That is when my husband carried me to the University of PA Hospital and they started trying to figure me out! I ended having to see Matk Brown which at that time was a Professor of Neurology back then and worked with a team of Neuro’s. Lupus was attacking my nervous system but my labs were coming out normal. But by the time they finally saw me my labs were coming positive!
It is possible that you have a lurking auto immune disorder that is causing this and it just has not completely come out of the woodwork yet! I know with my disease and experience that I was getting sick as a dog and yet the doctors had no proof of what it was. But when I got my records and read the doctor’s notes he knew deep inside that I had something auto immune. Hate to say this but many doctors go by textbook rules and those labs and testing. If a patient does not show anything then they can’t diagnose the problem no matter what you tell them.
They have to see it for themselves! Documentation! When I found this out I started going in and letting them see my mouth ulcers, my lupus rash, my low grade fevers. LOL! It is very frustrating to say the least! Knowing you have something but WHAT? Sounds to me like you have an underlying auto immune disorder that is coming and going but just not enough evidence there yet to pinpoint what it is! And there are hundreds of rare diseases out there that sometimes overlap each other and the doctors just can’t go and say you have this or that unless they have evidence.
Doctors are just like Auto Mechanics. My husband has told this to many of my doctors. They at times get a problem with a car and it takes them a while to try and diagnose it. Sometimes that car though is a stubborn case and they never get to diagnose it. Or later down the road they do! Even though we have all this medical technology that we have, there is still alot that doctors don’t even know about. We have come a long ways with medicine but still have a ways to go!
Bad thing with Lupus is that there still is no one test that can prove Lupus. They have to go by more than one blood test! And a Criteria List! If I would have been diagnosed right away many years ago I don’t think I would be as sick today because of earlier treatment. But you get really frustrated not getting any answers.
June 10, 2009 at 4:40 pm
sorry no info
AnonymousJune 10, 2009 at 9:34 pm
Thanks Dawn, I don’t entertain the idea that I have Lupus. I like this group as people share ideas. The other day, I believe that it was Emily’s mom made a comment about MRI’s and inflammation. I recently had an MRI (and have had other’s in the past) and I didn’t realize that inflammation showed up in MRI’s…hence now I am going to look more into this subject and see if this might be something that pertains to me. It may or may not. I learned something new that day (thanks Emily’s mom!) but I don’t believe that we all have the same diseases nor will we all have the same treatments. Thank you Dawn for caring enough to write.
AnonymousJune 10, 2009 at 10:26 pm
Hi I had a nerve biopsy June 9th 2005 I still have pain today. I was told I am stuck with the pain for the rest of my life.
I have inflammation in my body it was worse in 2007 then now but I never had a MRI to look for inflammation.
I had 2 MRI last year for my lower and middle back and they found a cyst in my back.
What kind of MRI with the dye would I need? I mean which location would they do the MRI?
I was told this tendinitis in my hands is not related to my CIDP but I wonder.
AnonymousJune 11, 2009 at 8:17 am
Hi Kristin! I’m not trying to say either that you have Lupus and you might just have unknown CIDP. But with the nerves regenerating and demylenating there could be a possible auto immune disorder lurking. But then the treatment you had last year may have placed you in remission and you are better now! And you might not have any problems ever again! I would not sit here and worry myself to death and live the best life I could enjoying every moment of it. If there is something auto immune going on it will eventually come out of the woodwork.
Our bodies are our best doctors! When something goes on with our bodies that is different and it makes us feel different whether it be a rash, upset stomachs any kind of symptom we know there is something going on with us that felt different than before. And sometimes it can develop into a pattern constantly popping up and you never saw this happen like this before, then you know there is a symptom of something going on! Your body will know it and be able to tell the difference between normal and abnormal!
Right now you seem to be doing okay and that is good! But if you start seeing problems later on then let your doctors know!
Sue! They pretty much use the same type of dye for MRI’s. I can’t remember the name of the dye but most people do okay with it! CTScan dye though is amuch different dye and more people have problems with that one than the MRI dye. Are you allergic to any types of seafood? I know these dyes have some kind of seafood in them and they will ask you that when giving the MRI. Most likely because of your lower back problems a MRI of the lower spine would be the test you would need.
But inflammation does not always show up in the MRI”s! Some cases yes but some cases NO! I had several MRI”s and CT’s of the spine when my back got injured and nothing showed up. Except for a buldged disk from the accident.
I was in so much pain and could not understand why that darn back was giving me such a fit! Went to a back surgeon and he ordered a CT Mylegram of the lower spine and when that came in they found 3 buldged disk and one was shattered on the opposite side where an MRI did not pick up. And it showed Inflammation of the spine in that area!
You have two test options. A MRI of the Spine with contrast or a CT Mylegram of the spine in the area that is being bothered!
Sue! If that cyst is growing it could effect the hands, legs and many other parts of the body if it is compressing against the spinal cord! Almost like having Lumbar Spinal Stenosis!
Hope this helps!
AnonymousJune 11, 2009 at 4:03 pm
[QUOTE=suewatters1]Hi I had a nerve biopsy June 9th 2005 I still have pain today. I was told I am stuck with the pain for the rest of my life.
I have heard this from many people. One of my moms close friends had a nerve biopsy done (unrelated to CIDP) and she still has incredible pain and other issues from it too. I guess if I were going downhill without a clue, then I’d do it…but I have not had any demyelination, from what I can figure out, since I got treated for a UTI last year (1.5 months before Pred). I have had enough issues, why add more. I have been reading more papers which say that a nerve biopsy is becoming a thing of the past, although some insurance companies still require them. It is just something that I will wait on until totally necessary.
You must be logged in to reply to this topic.