Okay…I wasn’t going to get into my whole ‘story’ but I guess I will. I need feedback because I’m starting to think that maybe I’m just doing to keep having degeneration everywhere and eventually just drop dead.
Any input? I appreciate all of it.Jen
Hi Jen,
Palomino is RIGHT AGAIN. You and I could be sisters (except that we don’t look alike, but MEDICALLY SPEAKING, we are identical twins). I was also virally induced, as was my son. Everything you describe I believe I found the answer for.
For potential hydrocephalus (it is almost ALWAYS missed — external communicating hydrocephalus doesn’t cause enlarged ventricles or optic nerve head effects, usually), do you have any of the symptoms? Motion sickness, mild ear aches, sensitivity to noise and lights, the feeling of pressure in your head, tremors in the morning, tinnitus (ringing in the ears), do you “see” or “hear” your pulse, especially with valsalva (straining), do valsalva maneuvers make you worse (like blowing up a balloon)? We can’t always go by our LP pressures (see Part 2), but symptoms tell a lot.
It certainly SOUNDS like you have mast cell disorders going on. Have you tried (with your doctor’s OK, of course), Zantac/Zyrtec (most of us take double doses). Any H1 and H2 antagonist will likely do OK, but these seem to be most effective in most people. You’ll know the difference in days. If that helps, then it is time to ask your doctor for Cromolyn Sodium (Gastrocrom), or Ketotifen if outside of the United States. That should start to reverse some of the feeling that you are imploding.
THEN, please join the registry as soon as I have it ready (we are testing our blood together) for something that many doctors missed. And better yet, there is treatment! (Yes, I’m already on it, as are my kids. WHAT a difference!). Did you see my lecture at ISNVD? It explains a little about how all of our organs can be affected, but there is more! So, hang in, Hon, we are getting there! Yea! Big hug, 🙂 Diana