What can it be
 

I have been passed off from one neuro to another. Waiting on my 3rd. Long story, but had neck fusion. 1 week later, re admitted to hospital. Inability to swallow. It took me 11 days and 3 tries to pass the modified barium swallow test. Got weaker by the day. Came home using a walker. Started PT. Did 10 weeks, and plateaued.

Sent to a neurologist. They tested me for MG. I had 2 different blood tests, both negative. EMG negative. I have a droopy eye. Difficulty with stairs, difficulty rising out of a chair. I feel so heavy & still have difficulty with everything I swallow. They did ice pack test. Negative. I have a tremor in my hand, and have a buzzing feeling in my muscles. Sometimes I feel like my muscles are quivering, and as the day progresses, I am so fatiqued.

Sent to Boston to see Neuro muscular specialist. What a joke that was. Because he asked me to hop, and I got off the ground high enough to slip a piece of paper under my foot, he said my muscles were fine and wanted to know what he could do for me

Looking for answers that nobody seems to be able to tell me. Nobody is actually listening.So tired of feeling like this and just want answers. I also get these little muscle twitches every once in a while. So frustrated.

Hi Maniac

Welcome to NeuroTalk :).

I am sure that other contributors to the MG forum will be able to offer you supportive and helpful thoughts.

Best wishes.

Hi, Maniac. Welcome to the MG forum!

Have they done an MRI of your brain and neck? Have you seen an internist to have basic testing such as a metabolic panel, B12 and D, thyroid, UA, CBC, etc? If not, do that.

Have you seen a neuro-ophthalmologist to determine if your eyelids are fatigable?

Have you been to a pulmonologist to see if you have fatigable breathing muscles?

I'm sorry to break this to the Boston neuro, but slipping a paper under someone's foot is not part of the MG clinical exam or any kind of proof! MG is all about weakness about exertion, and many MGers need more than one "hop" to cause that to occur. Add heat to any weakness and we become exponentially worse.

There is also the MuSK antibody test. They are discovering new ones, such as LRP4 (no test yet). No MG expert would dismiss someone with fatigable muscle weakness due to a negative AChR antibody test. BTW, do you have the test results? Or are you taking their word for it? Don't do that! Get the copies of the tests.

Can anyone recommend a neuro in Maniac's area?

I can't say what is going on. But people don't have those symptoms for fun! I hope you will find a bunch of doctors to help you. I hesitate to send you to Drachman at John's Hopkins, but he is an expert.

Anything else you can share about your symptoms? Keep a journal of all of this. That will help. I'm sorry you are going through this.

Annie

AcHr negative as well as musk. I have the results as I was given them to take to Boston, but they have no value on them, only <90 was negative. I have had all blood tests done with my PCP. You name it, they have done it. I did have brain MRI, no lesions. Neck MRI before my cervical fusion in January, they didn't see anything there. I was re-hospitalized 7 days after surgery, inability to swallow. Was there 11 days and passed modified barium swallow on 3rd attempt. Still have so much difficulty swallowing.

I have not seen neuro ophthalmologist. It is like nobody believes me. I had a PFT test but that was fine. I work in a rehab dept at a small hospital. I checked my O2 sats the other day as I felt I could not take a deep breath. It was 88 but came back up with rest. Walked again yesterday morning, went down to 82.

I am so discouraged and am so tired of feeling poorly. I am waiting on another appointment as they are sending me to another neuro. May be a long wait. So tired of being so fatigued and heavy feeling. Stairs are hard and so is getting up from a chair. I don't want to have MG, but they need to figure something out.

Thanks for listening Annie.

Doctors often want extremely obvious evidence before they go in any direction. Pretty sad, if you ask me.

I don't suppose I should say that women have an average of 7 years before a MG diagnosis; men only one year.

82% O2, no matter the cause, is hypoxemia. They consider 88% and below to be the time for oxygen. You need to have them redo the PFTs, have an arterial blood gas drawn, and make sure they do MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure). AND make sure they save all of those readings for you. Why? Because MG becomes worse upon exertion, which those consecutive numbers can reflect. Make that appt. pronto. Or, if you are this way again, dial 911.

That day that you could not take a deep breath was the day you should have been in the ER!! If you do have MG, that is a warning sign. Don't take this lightly. MG patients can tank quickly and severely. A good ER doc will do an ABG, PFTs (full, not basic), O2, check your heart, etc. This is just silly. Whether you have MG or not, you need to be in an ER when you cannot breathe well.

Could they have screwed something up during surgery and are now covering each other's behinds? Possibly. But surgery can also bring on an autoimmune disease. Sometimes, the antibodies are so busy attacking the tissues in the beginning of MG, they might not show up until later. Besides, MG is a CLINICAL diagnosis, backed up with tests.

Please do find a good N-O, one that is not associated with clinic or group you have seen thus far. Don't give them any records! Just say you think you have ptosis—can they look at your eyelids? Keep it simple. Don't even mention MG!

Personally, if I were you, I would be in an ER now. Did you know that O2 saturation goes even lower while we sleep, due to muscles become weaker while sleeping? I wonder how low your O2 is at night. A pulmonologist could also do an in-home, overnight oximetry, where you get hooked up in the afternoon and then return the equipment the next day.

Something is causing your symptoms and the doctor should not take them lightly. Hypochondriacs do not cause their O2 go tank like that!!! ;)

I really hate to say this, but neurologists tend to be so arrogant. There are really good ones out there, who will do whatever is necessary to help someone.

Did your symptoms go from head and down or feet and up? This isn't always the case, but MG symptoms typically begin in the head/neck area.

Keep in touch, okay? I'm concerned that you are on the verge of a crisis (if you have MG) or another dangerous situation from an unknown cause. PLEASE, seek help in an ER or dial 911 if you can't move, breathe, or swallow well. Any one of those is enough to prompt a 911 call.

Stay cool, rest as much as you can, and maybe take someone with you to any appts. so they can verify what you are going through. Document everything, including photos of an oximeter on your hand!

:grouphug:
Annie

Two weeks after returning to work, I could not catch my breath and did go to the ER. I was there 5 hours and they did lots of blood work including Dimmer for blood clots, everything came back negative. I rested and got fluids and the breathing got better. I have also had an echocardiogram. Also had a chest X-ray.

I live in Maine, and neurologists are so hard to get into. The small hospital I work at does not have one. The neurologist I have been seeing is sending to a neuro that also sees patients with movement disorders because I have a tremor in my hand and a buzzing feeling in my muscles. Forgot to mention, most days I feel like a bobble head doll. I feel like my head is all wobbly. The swallowing is my biggest concern. I am down 15 lbs but that is not the way I wanted to lose weight. The shortness of breath comes with exertion, and is not always present. I work a desk job, but I am so fatigued. I just hope they don't tell me it will be 6 months before they can see me. The fellow I saw in Boston wanted to run more tests like a muscle biopsy, but the Dr. he was working under told me there was nothing wrong, and that was the of it.

I just hope someone listens to me, as nobody really is of any help. I appreciate all of your suggestions Annie. I wish you were my doctor. I did take a selfie of my eye, and plan to show it to the neuro. The more tired I get, the worse it is. This sucks! If it is not MG, someone needs to figure this out, and so!

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?

Thanks, my others were sent to Quest in Massachusetts

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!

:grouphug:
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.

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.

Go to the ER if you become worse, please! I hope you can get in sooner.

Annie

I got in sooner!! Thanks to our CEO, I got my appointment moved up to Sept 26th. I will be seeing a neuro muscular specialist, and I took your advice and took a picture of my eye and one of the pulse of on my finger. I hope he listens!!

Great!!! Facts are hard to argue with! Fatigable muscles are not normal, no matter the cause. I hope things go really well!

Annie

Saw my new Neurologist today. He is a Neuro muscular specialist. I really like him. He is going over all my tests that have been done so far. He wants to repeat my EMG to rule out myopathy. If he does not get the answers he wants, he will move on. Possible muscle biopsy, or he will send me to Columbia for a single fiber EMG. He is actually listening to me. He said he wants to make sure nothing got missed. I am hoping he will be able to help me. I am a little hopeful!