Quote:
Originally Posted by AnnieB3
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.