Autoimmune Explanation for Symptoms

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Krackersones

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My doctor finally called me late Sunday night. I got to ask most but not all my questions (you always forget a few). He pointed to the following on my blood tests that he says points to an autoimmune explanation for my problems (random widespread twitching/constant spasm in left hand/tingling/but no weakness) under the broad heading Chronic Immune Dymelinating Polyneuropathy:*Smooth Muscle Antibody (IgG) 20 (anything below 20 is normal so this is borderline high)*IGG 2 -709 (normal is 241-700)*C3D Immune Complex Raji 13 (normal is 0-8)*IMMUNOFIXATION, SERUM: An abnormal trace concentration band pressent in the GAMMA region appears to be an IGG LAMBDA monoclonal immunoglobulin.*IMMUNOFIXATION, URINE- A trace concentration band migrating in the gamma region was too low a concentration to identify by immunofixation studies.ANA titre over 2000.I think he feels the last three results to be the most significant. These are probably highly specialized tests and neither of my first two neuros ordered them except for the ANA.The doctor told me that he sees lots of patients with twitching and spasms like mine and many have nerve damage on the muscle biopsy but don't end up disabled. He said CIPD is a lot more common than reported and that he sees one to two people just like me every month. He says he has great success in treating this with IVIG and other similar methods.All those commenting on the muscle biopsy issues I raised are right. This test is rarely ever done. You never see it mentioned in studies about twitching or neuropathy. My doctor is "the father of the muscle biopsy" so he is charting new territory in this area.The biggest downside of my conversation with him was when I asked about the inconsistent nerve conduction studies done three weeks apart. The first done by his colleague's fellow at USC. I mentioned that his colleague's fellow warmed my feet before the test and I don't remember this happening when I did the test at his office. I had read that cold body temperature slows nerve conduction and wondered if this could explain why my test went from normal to severely abnormal. I actually want it to be abnormal because sensory nerve problems point away from ALS and towards a treatable condition. He would not say ANYTHING on why the sensory nerve tests were different. He was very defensive and curt. He said "I will say nothing else on this subject except doctors sometimes disagree." I thought it was an objective test and just wanted possible (not certain reasons) to explain the discrepency. He wouldn't speak to the issue. He did say "I don't think body cooling effected your results." But he didn't and wouldn't say why. This just didn't make me comfortable.I asked about the tongue issue, he said he didn't think it had any special signficance. He said he just had a patient complaining of similar symptoms who said they went away after IVIG treatment (this is the treatment that works if your problem is autoimmune).I know I said I would stop posting but I thought I have might have info that might be beneficial to those wanting to know more on how to possibly find answers if they are really suffering. Those with constant twitching may fit this category and I want to offer them possible help.Any comments on your nerve conduction tests and body warming would be helpful.Thanks,Krackersones
 
Thanks for the lengthy detailed post Jro....I'm quite sure there could be some of us 24/7 twitches who could have a problematic nerve/s thats the cause of all this and its reassuring for you to have a confirmed diagnosis....i know its a very frustrating at times because the symptoms are nearly always there...but i always take relief in that its not going to be life threatening to me.ATB
 
Hi Krackersones - Mostly good news! The best part is that you have caught it early and this is a good thing, to start the treatments early on - at least from what I've read. I had to look up IVIG treatment to see what you were talking about - same as infusions for arthritis, huh? This is the site I found which seems relevant - NOT a blog or forum - just informational. Too bad your doc had to get testy about the NC results - typical researcher's reaction. When people are a bit avant garde in any kind of science they get a lot of skepticism from peers and, as a result, may become a little defensive. It was good for you to post so don't have any doubts about that - people need to know that there is sometimes an answer, a treatment. I sincerely hope this treatment is your silver bullet. I love it when people find answers of any sort. In my case no real answer - lots of guesses (my antibodies were just fine) and suppositions based on some spine evidence. But I am feeling better off the drugs - just have to stay away from the wishing-I-was-like-before mind-set and I'm fine. Tell us how your treatments go and any other follow ups? There are still many here who enjoy the information. Best of luck. :D)
 
hey Krackersones-- thanks for the great post once again. i am really tired so am not going to send a long note but just wanted to say thanks and to let you know i was thinking of you..... i did have leg warming on one of my ncv's... at johns hopkins... they had a lamp. my local neuro did not warm the leg
 
Many thanks for your update.I don't know what to think. Honestly, I would question all the above with an immunologist, but first I would give a shot to the treatment he is proposing as there is nothing to loose as far as my personal experience goes.First question is about the NC. I think any neurophysiologist would warm-up the limb. Ok, it could be not quite required, but this makes the "standard".Second question is about the monoclonal lambda chain. Why?The thrid question is about the biopsy versus EMG. The goodness of the EMG is that checks several limbs. A single biopsy may give you information about only a specific area/muscle. In other words, if there is a normal EMG, then it would make no sense to to a biopsy unless there is reason to think that the muscle itself is somehow suffering. I suspect weakness should be present to think that way.I really wish to know how things will go for you.All the best and many thanks for your post.
 
If you take enough tests by enough people, eventually something will be found that is wrong with you. When you are subjected to machines that have no feelings, not even for lovely music ;) , and doctors who are trained in intervention as a way of justifying what they studied, then you are on dubious ground indeed. Why not twitch and just be healthy? It's an option, and an exciting one at that.Basso
 
You all are thinking the same thoughts I am. As far as just leaving things alone, that's just not my nature. My symptoms are way to uncomfortable and came on too suddenly for me to just ignore them. Something is going on and I am just they type of person that needs to pursue it. I envy those that can adapt and be more philosophical but that's not me at the moment.As far as not warming the limb, I may never get answer to this as Dr. Engle was insulted I asked about it. There must be reason he would deviate from standard protocol if he in fact deviated. Maybe they did warm me in a way I don't remember or wasn't aware of. He just did not like me questioning the difference in results in such a short time frame. This in of itself put him on the defensive. My mother-in-law asked a neuro in her local area (5 hours from me) about my situation. The neuro she asked knew of Dr. Engle and described his reputation as someone who runs every test under the sun and is very inflexible. So the comments a little on the negative side but interesting that he is so well known. The monoclonal lambda thing. This is not good in terms of overall health. It is a precancerous maker and puts me at risk anywhere from 6% to 25% chance of getting multiple myeloma in the next 20 years. The actual risk between these numbers depends on the additional particulars I learn about my situation. On the otherhand, this trait is strongly connected with the symptoms I have and has been shown to respond to plasma exchange and IVIG. Having an explanation that is other than ALS and connects up with a possible solution to the symptoms is a positive. The future risks of cancer are definitely a negative. But what can you really do? Some say knowledge gives you power but it also makes you worry. I'll try to eventually just accept my situation and try to stay positive. I have an appointment on December 3rd with a hematologist/oncologist who specializes in multiple myeloma (a very deadly uncurable cancer). He will likely be able to tell me what to make of my test results in terms of risk and future testing needs. He will also probably want to run tests to rule out having the cancer right now (not something I look forward to waiting to hear back about). The finding of this monoclonal gammopathy is known by the acroynm (MGUS). If you search this term and neuropathy you will see lots of info on the connections between the two. It is rare in someone as young as myself (37). It is also something people learn about by happenstance when the undergo a lot of tests. The test is immunofixation and is not at all standard. On the EMG vs. muscle biopsy, I agree that it is strange to do a muscle biopsy when the EMG shows nothing. Dr. Engle knows the muscle biopsy is more sensitive and will pick up things sooner and this is his speciality. He goes digging for problems. I knew there was a problem. My body was telling me that. I now have tingling sensations all over which does connect up with the abnormal sensory nerve results even though this did not show less than two months ago. Dr. Engle also said my clinical exam showed sensory nerve problems but the other neuros did not pick up on any of that. They said they saw no problems. As far as weakness, I am not an athlete. I just do normal things like walk, run up stairs, carry heavy things around at times, type, speak all day, etc. If weakness were the only thing that could bring you to a neuro, I would never have seen one because I notice ZERO weakness. I even did an unofficial test of my legs. I did 20 deep squats in a row. I haven't tried to do anything like that in five years and I did it. My legs were sore for a day or so afterwards but went right back to normal.I think I have an immune system problem that is causing my symptoms and I pursued it so aggressively that I caught the damage before it could show up on an EMG. If my symptoms are caused by MGUS, they do not progress at the rate like ALS, which is a good thing. This MGUS stuff and ALS are really poorly understood problems in the first place so there are no certainties with this and I will have to just take it day by day.My advice to others is NOT to push like I did if your symptoms are tolerable. If they are making you miserable then I think you should seek answers because you may find relief for your symptoms in the process and another explanation that doesn't point to either "I have no idea" or "ALS." For some, something in the middle is less scary. For others, the "I have no idea" is better.I really hope my scenerio is not freaking people out. I will continue to report on major news in my case if it helps others who are forced to or choose to navigate a similar path.If you think my situation has moved outside the subject matter of this board, I don't might hearing that opinion too.Krackersones
 
You all are thinking the same thoughts I am. As far as just leaving things alone, that's just not my nature. My symptoms are way to uncomfortable and came on too suddenly for me to just ignore them. Something is going on and I am just they type of person that needs to pursue it. I envy those that can adapt and be more philosophical but that's not me at the moment.As far as not warming the limb, I may never get answer to this as Dr. Engle was insulted I asked about it. There must be reason he would deviate from standard protocol if he in fact deviated. Maybe they did warm me in a way I don't remember or wasn't aware of. He just did not like me questioning the difference in results in such a short time frame. This in of itself put him on the defensive. My mother-in-law asked a neuro in her local area (5 hours from me) about my situation. The neuro she asked knew of Dr. Engle and described his reputation as someone who runs every test under the sun and is very inflexible. So the comments a little on the negative side but interesting that he is so well known. The monoclonal lambda thing. This is not good in terms of overall health. It is a precancerous maker and puts me at risk anywhere from 6% to 25% chance of getting multiple myeloma in the next 20 years. The actual risk between these numbers depends on the additional particulars I learn about my situation. On the otherhand, this trait is strongly connected with the symptoms I have and has been shown to respond to plasma exchange and IVIG. Having an explanation that is other than ALS and connects up with a possible solution to the symptoms is a positive. The future risks of cancer are definitely a negative. But what can you really do? Some say knowledge gives you power but it also makes you worry. I'll try to eventually just accept my situation and try to stay positive. I have an appointment on December 3rd with a hematologist/oncologist who specializes in multiple myeloma (a very deadly uncurable cancer). He will likely be able to tell me what to make of my test results in terms of risk and future testing needs. He will also probably want to run tests to rule out having the cancer right now (not something I look forward to waiting to hear back about). The finding of this monoclonal gammopathy is known by the acroynm (MGUS). If you search this term and neuropathy you will see lots of info on the connections between the two. It is rare in someone as young as myself (37). It is also something people learn about by happenstance when the undergo a lot of tests. The test is immunofixation and is not at all standard. On the EMG vs. muscle biopsy, I agree that it is strange to do a muscle biopsy when the EMG shows nothing. Dr. Engle knows the muscle biopsy is more sensitive and will pick up things sooner and this is his speciality. He goes digging for problems. I knew there was a problem. My body was telling me that. I now have tingling sensations all over which does connect up with the abnormal sensory nerve results even though this did not show less than two months ago. Dr. Engle also said my clinical exam showed sensory nerve problems but the other neuros did not pick up on any of that. They said they saw no problems. As far as weakness, I am not an athlete. I just do normal things like walk, run up stairs, carry heavy things around at times, type, speak all day, etc. If weakness were the only thing that could bring you to a neuro, I would never have seen one because I notice ZERO weakness. I even did an unofficial test of my legs. I did 20 deep squats in a row. I haven't tried to do anything like that in five years and I did it. My legs were sore for a day or so afterwards but went right back to normal.I think I have an immune system problem that is causing my symptoms and I pursued it so aggressively that I caught the damage before it could show up on an EMG. If my symptoms are caused by MGUS, they do not progress at the rate like ALS, which is a good thing. This MGUS stuff and ALS are really poorly understood problems in the first place so there are no certainties with this and I will have to just take it day by day.My advice to others is NOT to push like I did if your symptoms are tolerable. If they are making you miserable then I think you should seek answers because you may find relief for your symptoms in the process and another explanation that doesn't point to either "I have no idea" or "ALS." For some, something in the middle is less scary. For others, the "I have no idea" is better.I really hope my scenerio is not freaking people out. I will continue to report on major news in my case if it helps others who are forced to or choose to navigate a similar path.If you think my situation has moved outside the subject matter of this board, I don't might hearing that opinion too.Krackersones
 
Here's another intersting fact in my saga. The first test that led me to pursue a possible autoimmune angle was my ANA titre being over 2000 when normal is below 80. This was from September. My October tests run by Dr. Engle's people, revealed a negative ANA result. Meaning there was not an abnormal level of autoimmune antibodies. I asked my rheumatologist about this and he said test results can vary for many reasons. This doesn't mean the problem went away, just that it didn't show up on the later test.I am starting to think that a lot of peripheral nerve problems really are autoimmune-related (like many people on this board have stated before) and it's just a matter of how badly you want to pursue help. If you try an immune-type treatment like IVIG and it helps, this is good proof that your problem is immune-system related. This is really how they have made the connection in all the cases in the studies I've read. They don't understand the pathological mechanism. They just know the treatment helps a lot of people so there must be a cause and effect relationship. IVIG is sooo expensive and if you are not disabled or really complaining and pressing for solutions, doctors will probably not give this to you. Therefore, there is not much data to prove the connection in milder cases. The doctor's like Engle who see the intense people like me are the ones who see the cause and effect and can speak to it with authority. They are probably not out there making a huge deal of this because for many people the symptoms are relatively mild (i.e., manageable and compatible with a decent life) and progress very slowly. The big case studies and published studies are more about people with real disability and when they get the IVIG many have dramatic improvement. This is more newsworthy than "I treated someone with twitches and the twitches decreased or went away after giving them a $100,000 a year treatment that often has to be kept up to keep up the benefit."
 
Hi Krackersones- edado, I am inclined to agree with you on looking into problems that are pervasive and painful. It seems that many here have straight bfs: they twitch/fasciculate, and have odd sensations that come, change, and go, & often decrease in amplitude or variety over a year or two. That is the extent of their physical problems. For those of us that have reoccurring or consistent physical pain from symptoms that is another. I posted about CFS this last week - had one reply - maybe they thought I meant chronic fatigue instead of cramp fasciculation? My bfs symptoms are tapering off but I still have the spasms and cramps and I still get soft tissue injuries from them. It is all very well to have someone tell me to stop looking for an answer but they are not the one with the sprains, strains, and muscle tears - 3 years of it may very well change their minds also. Some people actually do get diagnosed with endocrine and metabolic disorders, chronic infections, immune problems, etc. Some of these have treatments & therapies that lessen the symptoms. It would be short-sighted to write these off as just bfs or anxiety related. Besides, even though I may be able to live with this condition, it is my responsibility to find out if it is hereditary, & if so to tell my kids. If it is metabolic, I need to change my habits so as, for example, not to stress my kidneys, or cause other problems down the line, or to take supplements to advert undue stress on my system. Jro - it seems that it will all settle out eventually for you, since you are almost at the end of your testing and evaluation. It must be hard waiting for all the pieces to fall where ever they may. I think you know what you need to do and you are taking care of it in the best way you are able and this is good. At least you found one doc to take care of all of it, and aren't being referred by each specialist you see to another (as I am at this point). Even if he is a bit touchy, at some point you may want to consider a second opinion after all the data is in. That is the point I agree with EyeoftheWild on, data is just data - it is often open to interpretation. It never hurts to have another trained pair of eyes looking at it (an immunologist as edado suggests), and regardless of how well-regarded your doc may be, you have seen his human side so you know he is not infallible. Keep in touch, OK? Best wishes.
 
I appreciate the empathy and thoughtful responses. This will be a more lengthy process than I'd hoped but I will press forward. I will likely not post updates again until I have gotten through ALL the testing and results (and maybe even a second opinion as has prudently been suggested) and tried some treatments. Then maybe my story will shed more light (even if only for a future rare person happening along this site with a similar condition) rather than being a source of anxiety or a tedious exercise in unproductive speculation.Thanks again for the kindness I've been shown here by many. There is a connection between everyone who struggles with health issues of any kind.Krackersones
 

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