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Originally Posted by bny806
Very true Matlida- I stress that maybe it's all placebo effect (the ivig) I think I have a bit of PTSD from the first dr I saw with all of this who said he thought it was ALS.. (i was 30 a few weeks post partum with two kids 16 months and under)- total panic.. I feel much much much better than I did, but some things seem a touch worse or different too, which makes my mind wonder, though I Try to not let it! I have weird skin rashes a lot too - and horrid joint aches.. (my ANA is always pretty high), so they all say it's something autoimmune.. esp with such a strong family hx of autoimmune stuff.. but again, my mind just worries without definitive diagnosis!
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Mitochondrial Disease is tricky. Many Mitochondrial Disease patients use IVIG to treat the secondary issues caused by the Mito. It has proven to be very helpful for the population that needs it.
Mito can cause anything from a tremor to constant illness to deafness to heart disease to kidney issues to liver, seizures,and a zillion other symptoms and secondary disease processes- it is now being connected to Huntington's, Parkinson's, cancers even. The most common symptom is profound fatigue.
It is a very complex disease processes with anything from very mild symptoms to extreme,sudden and life threatening.
When all other diseases have been ruled out, a referral to a Mito Specialist can be the next best step.
The muscle biopsy is an outpatient procedure for many adults. Not comfortable, but there is certainly worse tests.