Question
 

In the presence of debilitating symptoms but subclinical achr antibodies - would you pursue further evaluation for myasthenia gravis?

binding - .02
modulating - 12
blocking - 22

Many of us here, including me, are seronegative (we tested negative for the antibodies--that happens up to 20% of the time with MG patients). There are blood tests for MuSK and LEMS antibodies, too. Even if you test negative for all three of them, you could still have MG. If you symptoms are consistent with MG but your blood tests negative, the next step is to have a test called a Single Fiber EMG (SFEMG). This is usually done by a neurologist who specializes in diagnosing neuromuscular diseases. If your SFEMG is positive for MG, that's grounds for a diagnosis.

A SFEMG is done with very thin needles that are inserted into your muscles. You clench the muscle slightly, and the machine measures how the muscles respond to the signal from the nerves.

If you'd like to list your symptoms, the people here can give you an idea about whether they're consistent with MG.

Abby

Thank you for your advice.
 

My doc proposed a wait & see... retest in 3 months.

My symptoms started following a string of viral & bacterial illnesses this fall... bronchitis x3, influenza, stomach bug x2 & recurrent vaginosis/yeast infection following uterine ablation. It seems that I have not recovered since resolving these issues in February.

Current symptoms that have emerged & are now persistent include:

extreme fatigue
weakness in arms & neck
vestibular disorder
severe tinnitis
double vision... mainly at night
difficulty focusing eyes & maintaining focus
drooping R eyelid... worsening with stress/fatigue
short of breath
muscles "jump" & tire
difficulty keyboarding - mostly left hand weakness & control
intermittent swallowing difficulty
restless legs
periodic limb movement disorder

I have moved from full-time to half-time which helps but am exhausted by Friday. I continue to be very limited when it comes to social/family engagements... missing a lot of "life."

My symptoms are almost exactly like your, especially the exhausted by Friday and still working. I am sero-negative but I got a diagnosis of MG with a SFEMG. I would suggest going to a large teaching hospital and see a neuro-optomologist. That is how I got my diagnosis. They see MG all the time and they treat more aggressively.

I felt an immediate improvement with Mestinon.

Let us know how you make out
kathie

2 More Questions...
 

1) Does anyone feel like they have dropped at least 10 IQ points?

2) Are there any noted Docs in the Minnesota area?

Thank You for all of the insights! I appreciate your frank discussions & supportive community.

Those symptoms are severe, and I think it's nuts to wait three months before pursuing a diagnosis (although it's true that some people test negative at first and positive later). You need a referral to a neuromuscular specialist right away.

Some of your symptoms sound to me like classic MG, and some don't. But MG is tricky--most of us are atypical in some way (if that even makes sense!).

A lot of seronegative people here got diagnosed by a neuro-ophthalmololgist. Those guys seem to be excellent at interpreting eye symptoms.

Meanwhile, if your symptoms suddenly get worse, or if you have trouble breathing, or if you can't swallow, those are medical emergencies. Go to the ER of the biggest hospital you have access to.

Abby

Your symptoms also sound like mine. I can sympathize with you about have a hard time getting a diagnosis. All I do is wait for doctors.

Welcome! Where in MN are you (in general)? Literally up north? ;) I might be able to lead you in the right direction, okay? I honestly only know neuros in the Twin Cities area. Well, and Mayo too.

"Wait and see" is part of a BS algorithm that has nothing to do with the validity of your symptoms. MG is a clinical diagnosis that is backed up with tests! If you clinically present like you have MG, they can do a Tensilon test or a Single Fiber EMG. Doctors shouldn't just stop doctoring simply because a test is borderline or negative. You need help.

Do you mind saying what lab your blood was sent to for those antibody results? Borderline or negative results are not an excuse to not make a diagnosis.

You get a LOT of infections. Did anyone bother to test your IgG levels? There are 4 subclasses of IgG and a deficiency in them can cause the antibody test to be a false negative. A deficiency can also cause you to be more susceptible to infections.

If the labs were not sent to Mayo, I highly suggest they are redone and sent there.

Don't be shy about getting to the ER, like Abby said. If you do have MG, it can be dangerous if you aren't given sufficient treatment.

It's not that hot in MN yet. In fact, it still looks like winter. ;) But when it does get hotter, you have to be very careful! Heat can make MG much worse.

Let us know how you're doing. It is not fun to be undiagnosed!

Annie

Sometimes stepping out of the box helps in a diagnosis. For more than ten years I tried to find out what was going on with me and a Rheumatologist diagnosed me. He did most of the tests that many Neurologists failed to do. He did all those IgG tests too. He started me on the generic Mestinon and it's helped a lot. Sometimes, a little trial and error finds the answers. I hope you find your answer soon.

Thank you everyone! I truly appreciate your input.

I keep thinking that things will turn around, but feel like I am getting worse rather than better. As a teacher, I don't want to spend my whole summer sick! Some of my latest labs are below...

2013/03/29 acetylcholine binding antibody, serum 0.02 nmol/L. 0.00-0.24
2013/04/02 acetylcholine-blocking antibody 22 % 0-25
2013/04/01 albumin, serum by protein electrophoresis 3.8g/dL 3.2-5.6
2013/04/01 beta globulin, serum, by protein electro. 0.9g/dL 0.6-1.3
2013/03/29 aldolase, serum 7.3 U/L 1.2-7.6
2013/04/01 alpha-1 globulin, serum, by protein electro. 0.2 g/dL 0.1-0.4
2013/04/01 alpha-2 globulin, serum, by protein electro. m0.6g/dL 0.4-1.2
2013/03/28 B-12, serum 537 pg/mL 211-946
2013/03/28 hemoglobin A1C, blood, as % of total hemoglobin 5.5% 4.8-5.6
2013/03/29 IgA, serum 404mg/dL 91-414
2013/03/28 parathormone, serum 32pg/mL 15-65
2013/03/28 protein, total, serum 6.7g/dL 6.0-8.5
2013/03/28 alanine aminotransferase (SGPT), serum 14U/L 0-32
2013/03/28 aspartate aminotransferase (SGOT), serum 11U/L 0-40
2013/03/29 IgM, serum 374 40-230
2013/03/28 immature granulocytes, % of total cells, blood 0% 0-2
2013/03/28 gamma glutamyl transferase, serum 12U/L 0-60
2013/04/01 globulins, serum, total 2.9g/dL 2.0-4.5
2013/04/02 vitamin B1, blood 133.7 nmol/L 66.5-200.0
2013/04/01 albumin/globulin ratio, serum 1.4 0.7-2.0
2013/03/28 ferritin, serum 14 ng/mL 13-150
2013/04/01 gamma globulin, serum by protein electro. 1.2g/dL 0.5-1.6
2013/03/28 creatine kinase, serum 55 U/L 24-173
2013/03/28 calcium, serum 9.3 mg/dL 8.7-10.2
2013/03/29 calcium, serum, ionized 5.1 mg/dL 4.5-5.6
2013/04/03 acetylcholine modulating antibody <12 0-20
2013/03/28 Eosinophil Absolute Count 0.1 X10E3/UL 10*3/uL 0.0-0.4
2013/03/28 hematocrit, blood 41.6 % 34.0-46.6
2013/03/28 hemoglobin, blood 13.8 g/dL 11.1-15.9
2013/03/28 lymphocytes as percent of blood leukocytes 28 % 14-46
2013/03/28 lymphocyte count, blood 1.8 X10E3/UL 10*3/mm3 0.7-4.5
2013/03/28 neutrophil count, blood 4.1 X10E3/UL 10*3/mm3 1.8-7.8
2013/03/28 monocyte count, blood, automated. 0.5 X10E3/UL 0.1-1.0
2013/03/28 mean corpuscular volume, RBC 87 fL 79-97
2013/03/28 mean corpuscular hemoglobin, RBC 33.2 G/DL% 31.5-35.7
2013/03/28 mean corpuscular hemoglobin, RBC 28.9 pg 26.6-33.0
2013/03/28 platelet count 343 X10E3/UL /mm3 140-415
2013/03/28 red blood cell distribution width 15.0 % 12.3-15.4
2013/03/28 erythrocyte (RBC) 4.78 X10E6/UL 10*6/mm3 3.77-5.28
2013/03/28 neutrophils as percent of blood leukocytes 63 % 40-74
2013/03/28 leukocyte count, blood 6.5 X10E3/UL 10*3/mm3 4.0-10.5
2013/03/28 eosinophils as percent of blood leukocytes 2 % 0-7
2013/03/28 monocytes as percent of blood leukocytes 7 % 4-13
2013/03/28 basophils as percent of blood leukocytes 0 % 0-3
2013/03/28 basophil count, absolute 0.0 x10E3/uL 0.0-0.2
2013/04/01 gamma globulin, serum, monoclonal spike Not Observed
2013/03/29 IgG, serum 1101 700-1600

My antibodies have been off for some time. Elevations in igm & iga were most concerning, but the docs ruled out malignancies... no monoclonality. I don't know where the labs were run, but the reference ranges don't match my previous antibody labs run by Mayo.

I am in central Minnesota... my family doc is in Alexandria & Neuro is in Mpls. It seems that we are not in danger of hot days any time soon, but heat sensitivity is definately a problem. I am also menopausal & thought that the hot flashes & night sweats were par for the course. This seems to be messing with my thyroid levels too (I had thyroiditis, multinodular goiter & a thyroidectomy in 2004). I have had a rough road health-wise since that time.

I feel pretty strongly that I am not merely dealing with chronic fatigue as suggested by my docs. I will take your advice & go to the ER the next time I have a scary breathing episode - though I dread the thought of it - I dont want the docs to tell me that it is all in my head.

Thank you again!

Laura