Oh, re: My Disease(TM)

According to Dr. Pighead, I do not have Lupus or any other rheumatological disease. I see my neuro on Monday to discuss MS. I have had a couple of new symptoms, including random numbness and tingling in my hoo-hah (and not the fun kind of tingling) while I’m just sitting around. I can’t believe I’m sharing that. Haha, it’s at about this point in the rheumo’s office that I broke down crying (I had just told him about my vision floaters getting worse and was telling him about my hoo-hah). And at the next symptom, which I won’t tell y’all, I pretty much could only speak every other syllable, and I picked up my purse and told him I can’t see him because he’s not taking me seriously, and I ran out crying. Again, I’ll tell y’all all about it later.

So. No Lupus. MS is the next likely culprit. If not, maybe lead poisoning, but how would I have gotten that? Maybe the Psycho X was slowly trying to kill me back when we were married and wasn’t able to finish me off before I caught him cheating and left his sorry butt? I just don’t know.

Anyway, I feel energized. I’m going to clean my house during this teeny window when I’m not exhausted.

17 Responses to Oh, re: My Disease(TM)

  1. A friend of mine has MS…she said her first sympton was her nose going numb. Of all the things to go numb one’s nose. Good luck!

  2. We’re praying for you!

  3. I was diagnosed with MS a few years ago following a long and bizarre series of tests and ramdon diagnosis. I sincerely and most whole heartedly hope you are negative for MS, and you very well might be – here’s the lead poisoning! It truly, truly sucks. BUT! After my diagnosis I actually got on medication and feel better most of the time. And if you do have it, I would be happy to help if there is any way I can.

    Good luck to you.

  4. I had “My Disease” pegged at Lupus a while ago – my sister has it and Im pretty familiar with the symptoms – and you have listed a lot of them. I know the rheumo said you don’t have it – the only thing I’ll tell you is my sister had several negative diagnosis before they finally figured out she really did have it. Given the choice between MS and Lupus, Id choose “none of the above” – but my sister’s doctors have been able to help her control it pretty well – she went thru a pregnancy and everything.

  5. need a hug? i can swing by…

  6. Perhaps when you find out what it really is, you can write him a letter telling him what you think of him and his treatment of you. Pull out all stops.

  7. LOL, Bou, that’s exactly what I told Frank I’m going to do when I get a diagnosis. It will be polite and succinct with a little bit of scathing and schooling thrown in.

  8. There is an answer to what you’re going though. Saying an extra prayer that you find it soon.

  9. As frustrating as your situation is, keep in mind that there is a whole network of people praying for you. Technically it’s a web.
    A web of people that love you! God didn’t bring you all this way to drop you. He has a plan. No peeking.
    Something good is going to happen to you and Frank, I can just feel it.

  10. Having read your entire ailments listing it sure sounds like it could be MS. A little over half way through (I only stumbled acros your blog a couple months ago) I was thinking MS. My mom and my cousin have MS. The worst part about diagnosing MS is there is no real test for it. All they can do is rule out all other problems, and when nothing comes back positive, they then know it’s MS.

    No matter what it is, I hope you find out soon. If it is MS, I will add you to the list of people I ride for when I do my annual MS bike ride. I did 3 MS bide rides between 1991 & 1999, but I’ve done 1 a year since 1999 and will continue until I am no longer physically able.

  11. Oh sarah – I know I don’t comment much, but I read you every day – and just want you to know I’m pulling for you. You WILL get your answers. Best of luck.

  12. Prayers on the way from me. Hang in there, Sweetie!

  13. I know you don’t want all kinds of advice.
    Has one of your docs checked for celiac disease(gluten intolerance)? It is the most under diagnosed diseases is the country. It took over 3 years of tests before I was diagnosed. There are all sorts of neurological symptoms besides the expected GI problems.
    http://www.celiaccentral.org/Do_I_Have_Celiac_/13/

    There is an accurate blood test now even if a doc. tells you that the only way to test is an intestinal biopsy.

  14. I know you don’t want all kinds of advice.
    Has one of your docs checked for celiac disease(gluten intolerance)? It is the most under diagnosed diseases is the country. It took over 3 years of tests before I was diagnosed. There are all sorts of neurological symptoms besides the expected GI problems.
    “http://www.celiaccentral.org/Do_I_Have_Celiac_/13/”

    There is an accurate blood test now even if a doc. tells you that the only way to test is an intestinal biopsy.

  15. keep the faith, you. i hope you find an answer soon.

  16. I second Ceri’s Idea of Celiac Disease.

    Before I was diagnosed with Celiac I had ALL kinds of weird symptoms (just to name a few, numbness and or pricking pain in face, hands, legs, feet. Terrible headaches/feeling like I was in a fog, Random rashes, face would swell up on one side, I no longer could remember things I once knew well or remember what I did the day before, bad mood swings, at the end right before being diagnosed I could hardly walk to the bathroom, all I could do was lay on my parents couch because it hurt to much to move etc.)

    I know thats alot, but those were just some of the stuff I went through. I had people asking if I was anorexic or bulimic or not believing me that I lost feeling in my legs or my arms were stinging. It was so frustrating!

    I hope you get answers soon! Couldn’t hurt to get tested for Celiac just to check it out.

    Good Luck!

    - Jessika : Celiac Speaks – Symptoms, Recipes, Restaurants and Daily Life

  17. Jessika, yep, it’s celiac (with all negative tests).