Reply To: Looking for answers- doctors making me feel like I am crazy

May 29, 2012 at 2:05 am

SOO sorry to hear you are going through this… unfortunately I CAN RELATE! I was 30 when my illness started (actually a year ago today exactly was when I was admitted- emotional day today)!! I have the stomach pains (GI symptoms preceeded the neuro ones, which is common in GBS).. fast heart rate, numbness, tingling, weakness, droopy face/eyes, mouth.. I could barely smile, walk talk etc.. I must have seen 6 outpaient neurologists, my pcp, GI dr before truely getting help.. I had some dr’s tell me “well of course your tired, you have a 16 month old, a new born, work a full time demanding job” uggh.. weeks before I became sick I was running miles and breastfeeding taking care of my two small kids no problem.. I was THRILLED to be done with pregnancy and 4 years of miscarriages and high risk pregnancies and finally get my body back.. hahah joke was on me I guess!!!
Anyhow.. I have very simliar syptoms to you.. I couldn’t hold a pen, my silverware, barely hold my babies bottle, couldnt’ hold my kids at all.. Just the weight of holding them would push down on my hips and I could barely get one leg out from underneath me.. not to mention my arms were fatigued.. swallowing/speech ALL affected.. couldn’t even smile! I felt like my life was getting robbed from me – losing the ability to do everythign I love, but mostly be the mother I have always been and wanted to be!
I finally ended up in the ALS/neuromuscular clinic at the university here and got admitted into the hospital and got IVIG… after months of thinking at anypoint I was goign to drop dead.. I didn’t really feel tooo much better after the first round, but after the 2nd it hit me about 4 days later and felt like me again – got my dexterity and almost everything back.. though I”m a LOOOONG way from what my normal used to be.. (doubt ill be a runner ever again).. i’m just happy I can work and function as a mom mostly!

I also have exacerbation of my symptoms anytime I get sick, overdo it etc.. right now have strep throat and am having a pretty good “relapse” .. I have been diagnosed with CIDP (though i have reflexes in my legs, almost nonexistent in my hands/arms)..they did a skin/punch/nerve biopsy for my diagnosis..

I also would say FIND A NEW DR!!! Any quack can get a medical is really hard to find a good dr.. It is awful to not only feel crazy with all of this goign on, but feeel bad, and have the dr’s think it’s in your head is so discouraging.. (I think younger females with kids get written off often).. it’s ashame and a disgrace to the medical community that some providers do this. If your not functioning to what you think you should be for your age and yourself seek someone who can help you get your life back, or in the least who will listen, and try things to help! It took MONTHS of testing and more testing and finally I said enough – i need to TRY something! Good luck! keep us updated! (btw- I also have the vibrating thing – especially after exertion.. and insomnia due to the “legs and arms asleep ” sensation.. I have no proprioception – i dont’ know where my limbs are many times, but yet they aren’t totally numb either- it’s wierd) Your not alone 🙂