New doctor finding him strange
AnonymousJanuary 10, 2014 at 8:30 pm
My neurologist has disappeared for some odd reason. I had my EMG and then a spinal tap was suppose to be set up and then IVIG fusion was suppose to start. In the EMG report is specifically says that I am possibly a near end-stage demyelinating process. I had no idea what that meant. So that was done in Nov 13, 2013 but people have been on me not to let this go so I made an appointment with another neurologist that the liaison in my area told me about.
Well this new neurologist had 2 other doctors with him, didn’t believe my EMG report could be true. Said I had to much pain to have CIDP and never would answer any questions. I was there a long time as they whispered and sometimes just out talked in front of me as if I wasn’t there. How my face was so masked. I wondered if they thought that I got up at 4 am to drive the 2 1/2 hours, go pick up my EMG report and make the appointment 1/2 ahead of schedule as they asked.
So I even heard this new neurologist say I have him figured out, I just can’t figure out why he is in so much pain. So with that I asked to see him again and said “so what is wrong?” He wouldn’t never give me a clear answer. On my EMG it says I have mild-sever sensor – motor polyneuropathy, but his answer to me was “You have a type of neuropathy I just don’t know which one it is yet and thats what she need to fine out.” I found that to be a cop out answer.
So he orders another round of blood tests, another EMG, and tells me to go see a urologist.
I just saw the urologist and he was more concerned that I was not in treatment and wanted to know why he didn’t believe my EMG was correct? I told the urologist I had no idea except that he told me that I was in to much pain that I couldn’t have CIDP. So then the neurologist asked if I was willing to have the IVIG fusion and I said I was but I had to have someone order the spinal tap and the IVIG fusion because right now I was just stuck going through a whole new process.
I have heard of this happening to another lady where she had CIDP went to a new neurologist, he didn’t believe her EMG did his own and then said she was lying and had to again start over.
It takes so long to get appointments with neurologists and my symptoms have gone on for a year. Any advice? I’m also on disability so continuing to redo tests just makes me have to charge up what few credit cards I have until pretty soon I’m not going to be able to do anymore. And I’m just about at that point. The urologist will have me do a sonogram and I imagine with my deductible that will be around $195. That is just a precaution because the neurologist said I needed to see him because of bladder control issues which the first neurologist who did the EMG told me that would go way once I started treatment.
I just paid off the last EMG too. Is it always this hard when you first are getting diagnosed?
January 11, 2014 at 12:35 am
There certainly can be pain associated with CIDP. I don’t understand that part. It’s also true that diagnosing neuropathies can be difficult. If you have symptoms which could be GBS or CIDP, a spinal fluid test is a standard way of helping to narrow down the diagnosis. Have you not had that yet?
I don’t know where to find your earlier posts if you have described your symptoms there, and this site doesn’t work properly to help me find them. Can you post a link here or summarize your symptoms?
“End stage demyelating process” might apply to GBS. GBS is self-limiting. It reaches a certain point, then recovery begins. CIDP, on the other hand, is chronic. There may be no end stage at which the demyelenating process will halt.
As a general consideration, you should have a good relationship with any doctor. If you are uncomfortable with the treatment you are receiving, you are justified in looking for another.
AnonymousJanuary 12, 2014 at 2:52 am
My symptoms have been extreme pain in my lower back, buttocks, thighs and at times my pelvic region. I’ve also had times where I’ve gotten up and my legs have just stopped working. This has gone on for a year while different test were done to rule out things like bursitis and I have seen a neurosurgeon that says I have no problems in my lower back. Finally my neurologist found I was much weaker than usual and ordered the EMG and the neurologist that did the EMG diagnosed the CIDP in November. I waited till my neurologist called me and he also said I had CIDP and since I live 2 1/2 hours away asked me what hospital did I want to have the spinal tap done and the IVIG fusion at and I told him. I briefly had contact with him early December and he said he was working on getting the approval from my insurance.
No I still have not had a spinal tap. However I found someone who got in touch with my neurologist that I normally see and he is suppose to be calling me early next week. I have no idea how I fell through the cracks with my neurologist or if he will indeed call me. I’ve seen him for an extremely long time for a cervical neck injury that I have and then these new symptoms that started have been the worst pain I have been in. I always thought my neck pain which goes down into my back was really bad but this I cannot get comfortable and it hurts to sit.
Since I was getting a bit scared I went to see this new neurologist that I didn’t care for. He is the one that said that I had to much pain to have CIDP and also said I was to strong. Not sure where I got that I was to strong when I have to have help opening new jars of anything. What ever this is has started effecting my arms and I have noticed they are getting weaker also.
I think if this new neurologist would have taken the time to ask questions, he might have figured out I had a masked face from being extremely tired for one getting up at 4 am, and I”m tired in general many days. I have trouble reading or driving very far because both cause me to become sleepy yet I can watch a movie so some things do not make sense to me. I have also had bladder control issues.
So on the advice of the new neurologist I went to a urologist who asked the same thing, “Why didn’t he order a spinal tap?” So the urologist just has done the normal tests and so far has not found any problems. I will have to have a sonogram, but the neurologist that did my EMG told me that bladder control problems were also a sign of CIDP and once I got treatment that it would go away. I hope this all makes since. I have the neurologist that did the EMG, my regular neurologist and the new neurologist.
I am very comfortable with my neurologist i have seen over the years so I just hope he calls. I don’t mind doing another EMG as the new neurologist wants me to do because I don’t feel anything when I have had them done, but I keep being kicked down the road and I just wish I could get the spinal tap done so I know what is going on.
AnonymousJanuary 21, 2014 at 6:20 pm
I’m not finding this site very useful. People don’t seem to answer posts or I don’t do the right tags or something. The new neurologist I went to see I have decided not to see him again. I have had to many people asking me why he didn’t just do the spinal tap and I don’t have the answer.
It took me quite awhile to figure out why this new doctor and one recommended by the liaison from this site gave me so much anxiety and panic attacks and I realized it was because 1. would not answer any questions, 2. wanted to run more tests and not give me a reason why, and couldn’t bother to pick up the phone and call me about my blood results and say well we have these findings so we rule out this or include this. I got the results myself through an app I have on my phone through the lab I go to do my blood tests.
I also have a neck injury and for some odd reason this doctor decided to jerk my neck up and down and then tried to do it sideways and I had to stop him. I have never been to any doctor that just wouldn’t tell you anything. He shouldn’t be recommended by this association in my opinion. So I am hoping I just fell through the cracks some how with my neurologist I have been with for several years when his nurse retired and maybe the spinal tap some how didn’t get ordered because of that reason. I”ll see him in a few weeks.
I know for myself, if you get a bad gut feeling about a doctor and you don’t get any questions answered even a simple question they why are you paying him? I also took a licensed social worker with me to drive me to my appointment and had that person come into the room during the examination and the social worker couldn’t even figure out what this neurologist was doing.
Maybe this site is just not for me.
January 21, 2014 at 7:48 pm
Perhaps your expectation of what you can get from a website are not realistic. If you have a condition which is defficult to diagnose, you can’t get the answer here. What you can get is information from the experiences of those who contribute here, and suggestions how to go about getting help for your disorder. The first thing you need is one neurologist with whom you have a good relationship and who is able to do the differential diagnosis.
Diagnosis of neuropathies is not easy. The spinal fluid test, for esample, can support a diagnosis of GBS or CIDP, but can be inconclusive if taken too early.
Have you settled on one neurologist? Do you have a specific question? Your previous post likely received no responses because you asked no questions and because no one had anything to contribute. There are only a few regular contributors to this site. I post only when I feel I have a useful contribution, not merely to chat.
I suggest you stick to one neurologist, but if you are not getting satisfactory treatment then you need to change. The first thing is to nail down (or at least narrow down) the diagnosis. But keep in mind that some cases are difficult to diagnose. A good neurologist may not have all the answers you want, but will keep working on getting the diagnosis and treatment right.
AnonymousJanuary 22, 2014 at 12:36 am
I think you are correct and my I am realizing that my continued going undiagnosed with not much help has been what is causing me anxiety and to have panic attacks. I had to think back when I wasn’t getting any better after my neck surgery and I was going from doctor to doctor and nobody would tell me anything and I realized the same feelings came over me.
I need the spinal tap first and although that might not be the factor in the end diagnosis, it is a start. Continuing to do the same test over and costing me money however isn’t getting me anywhere.
I am hoping the neurologist I have had since 2006 will have a good reason for just not fallowing through and I can continue my treatment with him. I probably didn’t list all my symptoms because at times it’s hard for me to remember them. I have problems remembering basic things and I may go to do something and forget what I’m doing. Or can’t remember when I’m trying to type something exactly how to say it. Even talking with someone at times I have problems. I have muscle spasms and extreme pain. The spasms are both in my feet my muscles above my ankles, my hands. I wake up with just incredible pains in my arms, sometimes my thighs. It’s painful to walk, I have bladder control issues, and flaky skin at times. Mostly on my face. The pain mostly is in my lower back, buttocks, thighs, back of my legs now, hips and my arms now. My joints often hurt too. My feet hurt but I know that is neuropathy because I had been previously diagnosed with neuropathy.
I think I just wanted to blame or say something wasn’t right for me at the moment. If my neurologist doesn’t come through when I go to see him I”m really not sure what I’ll do.
Maybe I don’t know what questions I should be asking? I know you are right though GH in what you have said. I have had these symptoms though for over a year and a big worry of mine is becoming that I can never make any plans to do anything and I can’t go on trips and I don’t have a future right now. I can’t continue to go from one neurologist to another as I had to with my neck. It was exhausting until I finally found the neurologist that I have been seeing like I said and he finally figured out that I had the cervical spinal cord injury.
I have tried to study the disease as much as possible and know that the spinal test could still not come back positive and you need a good neurologist to fight for you in getting treatment if he still believes you have CIDP. As far as I know everything else has been ruled out. I have been to a orthopedist for shots in the hips. Thats was in case it was bursitis, acupuncture, epidural steroid shots into the lower discs just to see if that might stop the inflammation going on and I don’t think that would really treat this so I”m not sure why that was done, and a neurosurgeon to make sure I didn’t have any problems that he could find.
I’ve had blood test for hepatitis and HIV and I knew I didn’t have them but sure rule that out, all the B vitamins and the C-reactive protein to check for inflammation and that was inconclusive because it could have been a false positive because I’m on a pain patch. So I don’t know what other test that can be done? So all my blood work was fine except the C- reactive protein.
So I think I just need a good neurologist that is willing to fight and and get what ever needs to be done. The neurologist that did do my EMG did specialize in auto immune diseases and he was the one that diagnosed me with the CIDP. Unfortunately for me, he took a leave of absents. He worked along side my neurologist.
If you can think of anything that might help or questions I should be asking, please tell me. You cannot offend me as I think I have already been the offensive one. Thanks you for your input already.
January 22, 2014 at 5:47 am
Kirkly, you said your symptoms have gone on for a year. This would indicate CIDP or a variation that has similar symptoms. I think I would rule out RGBS because it is so rare and you have gone over a year. An accurate diagnosis is essential for the proper treatments to be prescribed. Diagnosis is costly, but probably not as much so as IVIg or PE. SCIg is a less costly alternative to IVIg because it can be administered at home and some patients can give it to themselves (no nurse required).
I was fortunate to have decent insurance throughout my illness, but I had some bills in excess of $50K that were not covered by insurance. The 1st lesson I learned was to negotiate the bill before accepting treatment. Make sure they will accept your insurance company payment as payment in full (after deductibles). If not, ask if they have a program for people with no insurance or financial hardships. Apply for the program or go to another provider. You may find you have to create a special trust that will shelter your assets before the program will accept you. Once that is in place, you may have to file for health care aid from your State. The ACA went into affect this month and programs such as Louisiana’s Medicaid have expanded their program coverage and eligibility requirements: http://www.benefits.gov/benefits/benefit-details/1270 .
It’s bad enough just having to deal with the disease itself, a financial hardship on top of this just complicates the whole process of getting the disease dealt with. I wish you the best in navigating both.
By the way, since you mentioned a lack of forum responses earlier, this forum has some undocumented etiquette that I think should be observed:
1. Search the other posts to see if your topic is already covered
2. Use a meaningful title for your thread
3. Add appropriate tags to facilitate forum searches
4. Do not double post (post the same message twice in one thread) or cross post (place the same message across several topics)
5. Act in a give and take manner; help others as often as or more than you ask for help
6. Do not post new problems on someone else’s thread and interrupt a topic of discussion
7. Write concisely and do not ramble
8. Give a little background before asking questions; structure questions to attract responses
I’m sure other forum posters would suggest additional behaviors, but these should help new folks here.
Have you ruled out Houston as a possible alternative to dealing with your non-responsive doctor?
AnonymousJanuary 22, 2014 at 8:22 pm
I”m not even int he position of getting treatment at this point because I can’t seem so far to get to the point of getting the spinal tap to confirm or not confirm the disease. And as I know this spinal tap still may not determine if I may or may not have the disease, I first have to have a doctor that is going to fight for me in getting some kind of treatment. I just nearly was making a post about this new doctor I saw and how odd he was since he came recommended from the liaison this site gives. Lucky I have gotten in touch with her and talked with her and she completely agree’d that I should not see this particular neurologist again.
If I tend to ramble it’s out of anxiety, panic and I have a lot or problems thinking and being able to explain things a lot of times.
I do have insurance and it’s a medicare supplemental insurance and it limits me to Louisiana or I would certainly go out of state. My biggest hope is that the tests to move forward with any kind of treatment were lost when my neurologists nurse retired and I should know this soon as I have an appointment with him in less than 2 weeks.
If for any reason he doesn’t work out, then I am at a loss because I don’t know how to pick out a good neurologist but to go to the website of my insurance and pick a name. I also can’t afford to keep doing the same test over again just because one doctor doesn’t like the results another doctor did and would like to do it himself. I find that to be a bit of fraud to the system. When I give the results of my EMG tests it has the graphs and everything included and that is being put out I assume by a machine recording what the needle or when you get shocked is doing. So I don’t think the doctor doing that can lie about those results.
I also don’t fell I have in anyway not followed the rules of etiquette except for my rambling that as I have explain have a hard and difficult time with.
So I can also respond to GH because she said I had previously not asked a question so that is why I had not gotten a response, but if you look at the previous conversation she had asked what my symptoms were so i gave them and then there was no response.
So I have given all the symptoms that I can think of and a question of how do you find a good neurologist besides just picking one off a list when you don’t know anybody to ask? And I had also posed a question in what questions should I be asking when I go back to this next visit.
And if this is true and I quote “There are only a few regular contributors to this site. I post only when I feel I have a useful contribution, not merely to chat.” Then there are not many people that are going to answer a post and I wouldn’t think so few people would be so concerned about etiquette and be more helpful in helping someone through the process and understanding what they are going through. They symptoms they are having etc.
January 22, 2014 at 9:14 pm
Here is a story about a CIDP sufferer in your State and what doctors and hospitals might be a good choice: http://www.wwltv.com/news/Frank-Davis-battled-rare-serious-disease-before-death-235315401.html
On another forum I read about a Neurologist, Dr. Leo deAlvare, at Lady of Lourdes Hospital in Lafayette, Louisiana who may have good CIDP experience. http://www.lourdesrmc.com/expertcare/neuromedical/neurologyclinics
If you don’t feel like you are getting the help you need on this board, maybe you will find what you are looking for here: http://www.livingwithcidp.org/forum
January 23, 2014 at 12:25 am
Kirkly, finding the right neurologist can be difficult — I don’t think there is any easy answer except to keep looking, if you want a new one. But didn’t you write that you already have a diagnosis of CIDP from a consulting neurologist? If that’s the case, then you should be receiving treatment of some sort for it, even without the spinal fluid test. Early treatment generally leads to better results. Is the holdup in getting treatment from your primary neurologist or from the insurance company?
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