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Originally Posted by AnnieB3
Hey, Neofate. I reread your previous post to get some more info. So it looks like you have a vitamin D deficiency and low thyroid, which may mean Graves. I hope you have been supplementing with Vitamin D, Magnesium and Vit. D. Not too much Mag though since that can make MG worse, if you have it.
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I appreciate your interest.
I did/do have a vitamin D deficiency,.. and I cannot take Vitamin D supplements as they utterly constipate me no matter the brand. I go on some stints of trying to get some natural sunlight for vitamin D production but honestly I can say I am not very consistent.
I have supplemented with Magnesium, but only briefly.
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Do you live near a university or research center? Can anyone refer you on to a neurologist? A neuromuscular specialist is better but any neuro can run an AChR antibody panel!  There's also the MuSK antibody test but that can be expensive. You mentioned previously that money is an issue. I'm sorry about that. Many of us are in a similar situation.
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I live in Birmingham, AL.
There are a few universities around. The most prominent would be UAB (University of Alabama at Birmingham) - a medical school at heart.
However, IIRC, they do not take BlueCross insurance.
No one I know has any clue 'who' to see. At best I will get told that I need to see a doctor to 'find out what is wrong with me'.
I think, gee... If only I had thought of that.
To be honest I am scared of doctors throwing my symptoms off as psychological, and dismissive. I suppose from experience of no results with the doctors I have seen have put me off.
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How's your diet? How high is your cholesterol? Is it slightly high or really high? Often simply a change in diet can lower a slightly high level. Were you given a statin drug to take? Those can make MG worse.
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My diet is not so good. Too much fast food,.. and I eat alot of carbs and meat.
My cholesterol likely reflects this. It is high, but not off the charts. No, I was not given a statin.
http://www.mayoclinic.com/health/red...tient-redyeast
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I have found that many neurologists don't like patients telling them what they "think" is wrong with their health. Yes, many neuros I've seen are rather arrogant. I think it's enough to say that you feel weak and give examples of that.
Are you comfortable with your primary doctor? Do you have one? They could run the AChR Antibody panel and send it to somewhere like Mayo. Then at least you'd have some info. A primary doctor could also do a neuro exam and tell you their findings. They rate muscles in an exam. For example, 2/5 muscle strength is fairly bad while 5/5 is best.
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I am not comfortable with any doctor at the moment, because I don't feel like I have a doctor who really wants to put forth the effort to solve a 'difficult' and I suppose, non traditional 'case'.. if you will.
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You could also see a neuro-ophthalmologist. They can assess your vision and tell you if you have "fatigable" weakness of your eye muscles causing your vision issues.
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I've thought of this. Would MG cause shaky vision.. ? And odd constant vision issues ?
I'm constantly second guessing myself...
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Are you short of breath? You could ask your primary doctor about getting breathing tests done. A pulmonologist is really the best one for that.
It really sounds like you need a few doctors to help you. If you are that bad off, you should probably begin with a neurologist. I'm surprised you haven't seen one yet! You can't mess with MG, if that's what you have. If you get so weak that you can't move well at all, breathe well or can't swallow, you need to be in an ER; diagnosed or not.
Have they checked your vitamin B12 level? Your primary doctor can do that too. Often, a regular tablet won't do. Some people need sublingual methylcobalamin, a B12 which goes right to work in the bloodstream. I take it daily. Since money is an issue, I get mine at www.iherb.com where they have reduced prices.
Anything else we can help with? I think your symptoms sound like MG but it's hard to tell over the Internet.  MG is all about fatigable weakness and it sounds like you do indeed get worse the more you do. It's the hallmark of MG.
Just bite the bullet and get a neuro. You deserve to know what's been making you feel so awful for six years!
Annie
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I'd like not to have a negative and wasteful experience, so I guess I need a referral to a neuro who cares to getting to the bottom of someones symptoms.
All in all I just want to feel half way normal again.. not too much to ask and I feel as though I'm suffering every day, and there is no end in sight. What makes things doubly worse is there are no explanations as to why. So I question my own 'sanity' as not knowing is an issue in and of itself.
Thanks for your help!