There is an LRP4 test. It is done by Athena Laboratories.

Have you had an MRI of your neck from AFTER the surgery? I would be very suspicious that something went wrong during or after the surgery. Perhaps go out of your area to have it done, just in case there is some aspect of denial on the part of the surgeons who did it. You are entitled to get the disk of the actual pictures, not just the report, to take with you for the new place to be able to compare the MRI's of before and after.

What hospital in Boston did you go to, can you tell that if not the name of the paper-sliding doctor? (Want to make sure I don't end up getting sent there next, since it looks like Yale is going to be a wash out.) Wish I could tell you someone good to go to, but haven't found anyone yet, Connecticut is not panning out well, and nearby NY hasn't shown anyone worth going to, either.

Annie, any data on why men get diagnosed in 1 year but it takes 7 for women? Do women tend to be seronegative more often, or have different sets or severity of symptoms? Is it something quantitative, or qualitative, or are we just so prone to hysteria and the vapors that no one takes us seriously, still?

I went to Brigham & Womans. The paper sliding was an analogy. That is about as high as I got off the ground, then he told me my muscles were fine. His last name was Amato. They tell you he will have a Fellow with him, however you would see the Fellow alone for about 95%of the appointment, then he comes in and over rides the fellow. Best of Luck, I hope you get answers soon.

No, I have not. The swallowing problem started prior to surgery, but not as bad. I started having the feeling of heaviness before surgery too. Everything got worse about 1 week pst surgery. Thanks for suggesting that.

Maniac, What they should have done is an arterial blood gas test. And MIP and MEP, or at least a bedside spirometry. Did they even check your O2?

You don't have to wait that long. Surely there must be someone who can see you sooner. Whatever is going on is not normal. You are doing fairly poorly. Please go see a pulmonologist as soon as possible. They can determine if the shortness of breath is due to a neuromuscular problem.

winic1, If you would care to do another post, I will address those issues there. This is Maniac's post and she needs only her issues addressed.

That's kind of you to say, Maniac (about being your doctor). The fact that many neurologists don't keep an open mind, don't stay objective, and are so dismissive of patients (especially women—yes, the 7 year wait is sexism) is very troublesome. Whatever is going on, you deserve the best possible care and to find out what is wrong. There are good neuros out there.

Can anyone here recommend someone for Maniac?

You should also have your vitamin B12 tested for. And thyroid, if those things haven't already been done. An adrenal problem is not common, but you can always ask an internist to do a morning, fasting cortisol.

Pulmonary hypertension also causes shortness of breath, but you have other symptoms that would indicate something neuromuscular.

I really hope the next neuro takes you seriously and is more thorough. The fellow was right about a muscle biopsy, but that usually happens after other testing is done, such as a SFEMG and the MuSK antibody test.

Please don't hesitate to go back in if you become worse!


Annie

Annie, my PCP has been wonderful. I have had both B12 and thyroid levels which are perfect. I have had Thyroid done about 5 times in the last year, as I had a left lobe thyroidectomy done as I had a 2.2 cm nodule. That was the start of my swallow issues and we hoped having it removed would help, however that did not end up being the cause, sadly. I take no meds for that, the other side has taken over.

I have had MuSK, negative. I had an EMG, not sure if it was a SFEMG or not. They did nerve conduction, then did put needles in top of foot, calf, hamstring, hand, bicep & triceps and made me contract my muscles. She said to her it looked like critical illness myopathy, however I was never intabated during my 11 day stay, I just had an NG tube in place for nourishment since I could not swallow.

We have no pulmonologist on staff, but I will ask my PCP. Hopefully I hear from Neuro office his week. Our hospital CEO is super nice, she keeps asking how I am doing, and keeps telling me to let her know if she can help. If they give me an appointment far out, she will see what she can do as she does have some pull, as we are a small hospital in a large system, and my appointment would be at our large sister hospital.

Thanks, my others were sent to Quest in Massachusetts

Athena owns Quest, so if you get to a doctor who mentions LRP4 testing, that is the way to get it done.

I have got an appointment with a new Neuro. December 15th. Trying to get in sooner, I hope so. Hopefully after they read all the notes from my hospital stay and see how bad my swallowing was and still is, they will get me in sooner. So tired of feeling crappy. This is wearing me down.