Getting Undiagnosed
 

I've been seeing a Neurologist lately and the eeg and nerve conduction study were normal. I was told I didn't have anything wrong. I'm in tears right now because this is so frustrating. It's been more than ten years of this and I'm so tired of tests not getting to the bottom of things. The test for the nerve conduction was done on my right hand only and the eeg was done while i was bending over a chair on the back of my neck and in my arms. It took about five minutes in all. the nerve conduction study - the guy had the wires in wrong at first and blasted me with pain, and after he switched the wires around he had to turn the thing way down. They are going to try and get me into the Mayo clinic, but there is only a slim chance. I give up... They are probably going to take me off of pyridostigmine too.

ugh, how frustrating!!! Who diagnosed you in the past - can you go back to them? The mestinon helps you? Why can't they just leave you on it if it helps - regardless of your diagnosis ? My neuro is so close minded it's frustrating - a negative test means you don't have it period - they don't think outside of the box - they dont' even consider seronegative diagnosis.. so incredibly frustrating.. keep us updated!

I was diagnosed by a Rheumatologist, because of a positive anti ach antibody test. It was positive for modulating antibodies. The Rheumatologist gave me the pyridostigmine to see how I reacted, and my reaction was good, but this Neurologist I'm seeing says that he can't count on my reaction, he needs actual data. He asked me how the Rheumy knew I was doing better, and I said "because I told him." That isn't enough for this doctor. He was condescending, making me feel as though I'm lying about what's going on. I hope I get approved to go to the Mayo clinic. With this Neurologist, I felt like I was on trial. He kept asking me questions that I didn't know the answer to. He was very intimidating.

There is evidence in my family of Channelopathies and I think this needs to be looked into. Whether or not it's MG, I know there is something going on. The thing I don't understand is that the last time I saw him he commented on how weak my muscles were. So, why am I made to feel like I'm on trial? I really don't think I'm imagining all this. If I am, then they need to refer me to a psychologist.

I'm confused. You have a positive blood test and he still doesn't think you have MG? that doesn't sound right. Unless I am reading this incorrectly, I would like for you to know that I was diagnosed with MG and the single fiber EMG was tried on my hand and on my forehead and it didn't come back positive. They said it was normal. I mainly have/had bulbar symptoms. I have confirmed mild eye lid weakness now and I do get fatigued easily that tends to get better with rest. I have the positive ACHR test and had it reran at multiple/different labs and it has been confirmed each time. I'm really sorry you're going through this :( . Please hang in there and keep your chin up.

...doesn't sound like an "...eternal optimist..." to me...:)

For what it's worth, Quandry, you have friends here, including lurkers, who have had or are experiencing similar frustrations...

I believe it was Admiral Ferregut (sp) who said, "Damn the torpedoes, full speed ahead!" :)

Are you sure you want to continue seeing this neuro? Is he a neuromuscular specialist or does he have experience with MG?

If your antibodies are positive and you present with clinical MG symptoms, why is he even questioning it?

My SFemg took almost an hour and was performed by an neuromuscular specialist at a large teaching hospital and they performed it on the eye muscles because they are often the first affected.

If the test only took 5 minutes how could they have repeated the stimulation sufficient to see degredation of muscular contraction? I think you need a new more experience new neuro with more experience with MG.

I would not settle for this level of medical treatment.
kathie

New neuro time!!!!
Mike

agreed.. new neuro time indeed... it's awful enough to feel awful, but to be made to feel that way and have your time wasted just makes it all so much worse.. it sure is hard to find a good neuro!

I also think you need a new neurologist.

"They are going to try and get me into the Mayo clinic, but there is only a slim chance. I give up... "

I think if you contacted Mayo and told them of your current treatment, you should have a good chance of getting in. I think they would be so appauled they would get you for sympathetic reasons. Let the doctors do the leg-work with getting all your testing over and writting all the letters but follow up with Mayo's medical concierge with your own letter of your medical history and your families as well as your current condition. That is what John Hopkins said for me to do. Persistance pays off. Keep following up by phone every month explaining your situation and medical condition. I did this with Jefferson and got my appointment bumped up from 8 months to 2 months.

kathie

:confused: I can appreciate that a neurologist needs data, the results of which, can go either way, but, I'm thinking, "Uh...you're the neuro, so get some! ..."

MG is cruel enough without the fight for diagnosis...let alone having a diagnosis and then having it removed!! It's about time the Neuro's all got together and decided which tests/results/symptoms determine a diagnosis of MG, collectively agree on it and than started actually trying to help people instead of the constant focus on disproving it! Why are we left jumping from Neuro to Neuro when surely they should all be educated to the same standard - its a shame the "Box Ticking" is more important than looking at the individual! We all know none of the tests are 100% so while they wait to develop one that is, they should acknowledge that there are people who will have MG who won't show up on every test (or, in some cases, any tests!) grow some balls and at least try to help to give those people their life back!!

I really hope you find a Neuro with some common sense and compassion and they help you to get back to feeling somewhere near yourself - Good Luck.:hug:

It seems to me that the younger doctors don't really know how to do physical exams. If my primary care physician did an exam like he does on me (very brief and incomplete), he would flunk out of nursing school. I use him because he is better than people I have had recently. My neuro is an older man and he actually can diagnose things while actually including physical findings of the patient. I had a PCP before that was very thorough, but he retired.

Hello Quandry
 

I am so sorry to hear that the neurologist is letting you down. You need to find a new one. Not all doctors are equil in regards to DX. You know your body better than anyone else. You know there is something wrong. Don't stop fighting for your quality of life. A new neurologist may help. Post where you live near, and maybe someone in the area on NT could tell you of a physician that could help you. You will find support here. ginnie

I have four positive blood tests from different labs. I recently went to a new neuro for a second opinion on getting a thymectomy; my neuro won't do it and I want to do everything I can to get better. I went to the Head of the Dept at a very, very famous teaching hospital. Ivy League.

He said my blood tests didn't count because they weren't from the Mayo Clinic and that is the only lab he believes in. He did a single fiber EMG on the spot and it was normal. He said I don't have MG.

I've been in treatment for 2 1/2 years, hospitalized in crisis twice, and on IVIG every two weeks all this time. If I so much as miss IVIG I go into crisis. Mestinon helps me immensely, and I have all the hallmark symptoms of MG. My symptoms do not fit anything else, and I am a pretty severe case, though not the worst ever.

I was in shock! I asked him if the fact that I was on IVIG and had taken Mestinon would affect the EMG and he said no.

I went home and found several studies that showed both Mestinon and IVIG can cause a SFEMG to be normal, and I believe even the blood test too. (My Mayo test came back normal.)

I went back to my regular neuro, and he said I definitely have MG, or a form of it that hasn't been identified yet. End of story.

wow tracy - that is awful!!!!!! I just can't stand how close minded some providers can be! Wow!!!! Of course IVIG and mestinon would affect the results - if they improve your muscle function - the tests will therefor show improved muscle function - how someone can't grasp that concept, especially someone educated is beyond me! Mayo labs can be wrong just like any other labs- no one is perfect... and 4 other positive labs - wow.... I hope that didnt' affect your treatment plan ultimately - seeing that physician!!!

Tracy, I am so sorry you are getting the run around. I hope you continue to pursue the thymectomy. I am pushing the topic with my neuro in the next visit in 3 weeks.

I have read so many studies that it is the best chance of remission (30%) and that nearly everyone shows improvement. I am a single parent of a teenage daughter and feel I have to try for her sake. I will let you know how it goes.

kathie

Does thymectomy help people that are seronegative and do not show any abnormality of the thymus?

Not to my knowledge.

I read an article in the 11th annual myasthenia gravis and related disorder conference where they tested seonegative MGer by adding more rapsyn ( the substance that makes ACHR receptors cluster) and they found if they added rapsyn to the test, 60% of SNMG tested positive for ACHR antibodies. They theorized that these MGers had low affinity binding and the test was not sensitive enough. (reference below). They felt SNMGers fit the profile of ACHR positive MGers. Theoretically, this would make thymectomy beneficial to the SNMGer. I can get to the book below because it is in the University where I work. I have not found a free link to it.

book:June 2008
Volume 1132 Myasthenia Gravis and Related Disorders 11th International Conference
article: Myasthenia Gravis Seronegative for Acetylcholine Receptor Antibodies
Angela Vincent, Maria Isabel Leite, Maria Elena Farrugia, Saiju Jacob, Stuart Viegas, Hiro Shiraishi, Olivier Benveniste, B. Paul Morgan, David Hilton-Jones, John Newsom-Davis*, David Beeson, Nick Willcox
Article first published online: 28 JUN 2008, pg 84-92

Tracy, I had to read your post twice, and skim it again. While I am not a doctor of medicine, I can say with confidence that the majority in my region who present with clinical symptoms, and a positive blood test would not only be likely to get a diagnosis but would be on the list for a thymectomy. I can also say with confidence that it's unlikely that a person without a diagnosis, would get IVIG either, unless it's critical or the doctor is iffy.

You have a neuro who diagnosed you, but he won't do a thymectomy?

Did anyone look at your chest, either by x-ray or MRI?

I'm just not getting this...:confused:

To add to my confusion, Mayo Medical Labs report the lowest positive values at
< or =0.02 nmol/L. As well, there is the following caution: "...Antibodies may disappear with immunosuppressant therapy..."

I was not present to hear your discussion with the doctor, however, I'm shrugging my shoulders...

Fortunatos, can you give me a link to the quote by Mayo about immunosupression and the test results. I need a copy of this for my neurologist, it is a very important point as I have been immounosupressed when I took the blood test and had negative results while taking Imuran for 3 years.

Thanks

Joe

Joe, My apologies for not posting the link. Here she blows...

http://www.mayomedicallaboratories.c...rpretive/83369

Dear quandry,
no one needs to get you into the Mayo Clinic. You can just call and make an appt. They have very skilled people who answer the phones who will help you get an appt with the correct Dr for your condition. Or help you make an appt with Dr of your choice. I've done this before, not for MG, but for another condition and got right in the same day! I was lucky but it can happen.


Bobcat

I went to the Rheumatologist that diagnosed me. He talked to the Neuro and the Neuro told him that I don't have MG and that the fact that the Pyridostigmine works on me is purely psychological and that he was closing out any more work on me. The Rheumotologist told him, "no", and he is going to get to the bottom of what's going on with me. However, I have to go back to the doctor who thinks it's all in my head and get a referral to the Mayo clinic; something I thought was already in the works. The Rheumotologist is still giving me the pyridostigmine in the meantime. I hope they don't take it away.

Hang in there Quandry, you have one doctor who wants to get to the bottom of this and positive lab results on your side. The MAyo clinic will not dismiss them so easily. you are going to one of the best facilities for MG in America. I am sure you will have a positive experience.

kathie

Thank you all for your responses. I am very happy that there is a doctor who is willing to fight for me and it seems that in these days he is a rare doctor. I do hope that the Mayo clinic can get to the bottom of what is going on.

One thing that bothers me about the Neurologist is him saying that my reaction to pyridostigmine is psychological. I take 60 mg four times a day. I think this amount might make me weaker if I was normal. Sure, it does make some muscles in me weaker, but my breathing is improved. I may be overdosing some muscles, but breathing is more important than anything else and the majority of muscles benefit from this. If it were psychological then I would have continued to take other meds to appease my doctors, but I haven't. I refused prednisone because of a bad reaction. I refused Cymbalta because of a bad reaction. I've refused Imuran because of a high cancer risk due to many family members with cancer. I've even been scoffed by this Neurologist for treating my jaw pain with Capsaicin and by chewing on hot peppers to relieve pain along the gum line, but I know it helps. So, if I know the difference between what works and doesn't work, then how can a doctor be so dismissive and accuse me of imagining that pyridostigmine works?

The whole time I spoke with this doctor he was demeaning and arrogant. He hammered me about having both negative and positive results in the past. He hammered me about everything as if I was on trial with remarks like "Oh, so you had negative results before, and Oh, you had this before, blah, blah, blah. If I signed a release of information, shouldn't he know all this?

I can't always remember to tell a doctor every detail with so much going on. Don't doctors do anything more than just review their own notes? When I told him about chewing on jalapenos for my pain he said "So, you rub jalapenos on your gums." I said, "I chew on them." He said again, "So, you rub jalapenos on your gums." It was like whatever. He kept changing whatever I said. Everything I said he kept misinterpreting. He totally dismissed some of the facts he noticed on my first visit. I told him my legs weren't as bad as my upper body, but when he had me lift my leg while in a sitting position, it was him that said my legs were weak too. How can he say he's going to close the book on me without following up? How can he twist things that I say around like a sleazy lawyer? The other Neurologist I used to go to was trained under this one and now I can see why I never got results. I'm am just so frustrated because it seems that some doctors don't do their homework anymore, but I do really appreciate that the Rheumatologist is fighting for me and is willing to think outside the box.

Hello Quandry :) I'm glad you have such a good relationship with your Rheumatologist. Often, all it takes is one, good doctor to get you through to a diagnosis. It's not uncommon.

I'm going ask you to think about something. Keep in mind that I am just offering you and many others in your situation...food for thought.

Sometimes, not always, but sometimes when we refuse medications that could be of help, we are sending mixed-messages. Here's what a doctor might hear. "Hurry up and fix me, but I'm not taking any meds. I know what's wrong with me so I'm going to tell you what to do. I won't do most of what you ask but help me." And while I believe very much in some of the old remedies, telling your doctor that you are munching on hot peppers isn't helping the situation.

So, give this some thought. Ask yourself again, why you aren't prepared to let him help you...take some time with this. I risk having you mad at me, but that's okay, Quandry. You (and everyone) else are worth it. :)

Fortunatos, I know you are well meaning, but I have been going through all this for about eleven years now. When I took Prednisone, I had suffered from prednisone psychosis. When I took Cymbalta, I bled profusely from my rectum. I'm not asking the doctor to hurry up and fix me. It's been all these years. The reason I don't take Imuran is because both my father and grandfather died of Leukemia, My Grandmother died of colon cancer, my mom had uteran cancer, my daughter had cancer of the cervix. My sister and aunt had breast cancer, and the list goes on... I've been as patient as anyone can expect, but it's been eleven years. How much more patient should I be?

The only reason I told the Neurologist about the jalapenos is because he asked me how I treated my Trigeminal Neuralgia. I didn't think I should lie about what I do. Here are some sites showing how capsaicin works, and by the way, capsaicin comes from hot peppers. http://www.ncbi.nlm.nih.gov/pubmed/1539818 http://www.webmd.com/pain-management...topic-overview http://www.researchgate.net/publicat...inal_neuralgia

I'm not some idiot who spouts out some concoction or old remedy without researching first. I would expect a neurologist who treats Trigeminal Neuralgia to know a bit more about how to relieve the pain.

I'm not saying I know more than the doctors, but I've had a lot of time to do my own research. My thoughts should not be discounted because I'm not a doctor and I shouldn't be told that I can't investigate on my own. That's like giving a doctor the right to be God. If I find something that works, I want to stick to it and I don't want to be on a million pills that cause more problems than necessary.

Are you saying we should be ignorant and allow doctors to kill us more quickly by not questioning them? In my mind, if a doctor doesn't want to be questioned, than he is arrogant. How can I trust someone who is so arrogant that while I was still talking he starting dictating over my voice and dismissed me as his nurses escorted me out of the room. He was obviously finished talking to me because I challenged him because I wanted answers. He wasn't going to investigate any further and was about to dismiss me permanently. That's when he said he'd send me to the Mayo clinic. I have to fight to get answers because if I don't stay on the pyridostigmine I may stop breathing all together.

Thank you, Quandry. I do care about you, and keep in mind that I am a patient as well. I have encountered a few bumps in my journey. For what it's worth, I kicked a neuro out of my hospital room, and told him not to come back.

Another question, if you're willing.

"...How can I trust someone who is so arrogant that while I was still talking he starting dictating over my voice and dismissed me as his nurses escorted me out of the room. He was obviously finished talking to me because I challenged him because I wanted answers. He wasn't going to investigate any further and was about to dismiss me permanently..."

Have you ever had someone accompany you to an appointment with this doctor?

Not this doctor, but my daughter went with me to the Neurologist that this guy trained and the Neurologist told my daughter (an adult) to shut up. I don't want anyone else to feel humiliated, so I won't have anyone else come with me to this doctor.

Quandry, I have a suggestion for you. Write a summary of your symptoms and medical history from a patients perspective in chronological order. Reread it and correct it over and over, and take out and personalization of treatment by other doctors. You will need this when you go to Mayo. That way you will not forget anything, the doctor has a hard copy for future treatment reference and you will be able to focus on the more important symptoms. That way when you come back from Mayo, you can use this when you go to your NEW neuro that has no preconceived notions and will be receptive to Mayo's definitive diagnosis.

Don't let them make you play their game or get substandard healthcare. You deserve better than this. Move on to a new doctor who will treat you and your disease professionally.

Good Luck,
kathie

Hi quandry
 

Mayo clinic is a good choice. That is where I went to get to the bottom of my imedical problems as well. Do you know what to expect at that clinic?
Also don't let any doctor brush you aside when you have real concerns. being treated like that is not acceptable. You are deserving of courtesy and fair treatment. Write down all your symptoms from the beginning. This will help when you go to see this new doc. at Mayo clinic. He will have a record of your daily issues. I wish you all the best. ginnie

I have read that it does, that some people have abnormalities that show up after the thymus is removed and biopsied, and during MRI it looked "normal". My neuro says seronegative means nothing, the symptoms are what counts.

Quandry, I applaud you, always always always question. One of my doctors was actually killing me (not on purpose!), I was taking a medication flaring up my mg over and over and over. And I finally (after years) put two and two together and said, wait, this med is putting me in the ER year after year!! And every doc said "no, it is not". Until finally a doc realized I had MG and said, oh yes it is. Always question, believe your body, if I did not believe my own body and advocate for myself I would not be alive right now. It is such a horrible struggle, I wish you the best and I hope you find doctors that do believe and trust what you know about yourself and your health.

Who is it?
 

Hi Quandary,

I've also been going around in circles for 13 years with trying to get a diagnosis. I'm in Arizona, too. Are you willing to share the name of this neurologist you are unhappy with? I'd like to try to avoid him.

The pendulum has swung again, but this time back to a diagnosis of MG. The doctor who tried to undiagnose me says it is MG because of the positive Anti ach modulating antibodies. After I presented him with a copy of the positive Anti ach test and a copy of high c reactive protein he pulled away from his former diagnosis of "All in my head." He thinks that I don't need to go to the Mayo clinic after all.

This doctor said that I'm a complicated case, and I told him that I don't mean to be complicated, and he said, "It's not you, the symptoms are complicated." I hope the complication isn't the reason he tried to dismiss me so readily before.

If we are not crazy when we go to these doctors, they will drive us that way soon........

I hope that you do better now that somebody has decided what is wrong.

I would think Dr's would be excited about a challenge.. instead it seems most of them just want a black and white answer.. just to be fast and move on.. .frustrating!!

How high was your anti ach modulating ab? Mine was 20 on a scale where 0-20 was normal.. this is after IVIG and when I wasn't too symptomatic..

southblues - seriously.. they make me feel crazy!!!