New Here as Well - Questions?


I am new here as well and I also don't have a dianosis...but have many of the same symptoms as the earlier new poster. In fact, every day seems to bring a new one and then old ones fade but sometimes return later. This came on acutely exactly 1 month ago, but now that I look back, I had muscle weakness back several months...just not very severe. I finally went to my doctor when I noticed the 2nd time that I got lightheaded. He checked my heart (which my rate seems to have dropped to around 52-55 bpm, which its not always been that low) and took a wait and see approach. Didnt take long. The following Monday (2-18-13) I left class at 10 in the evening with numbness and tingling and cold feeling on and off over a large portion of my body (face, ears, legs, arms, back, etc.). I called the doctor the next day and he ordered a brain MRI to look for MS. The MRI was normal with no lesions, tumors, etc. Since then, I've had so many different symptoms but mainly weakness, numbness, tingling,fasiculations, and only mild burning once or twice. I've had a ton of blood work done checking for inflammation and autoimmune markers and they are all normal...lyme titer, HIV, ANA, ESR, CRP, heavy metals, magnesium, complete metabolic panels, CBC with name it, I've had it. I have been to a Neurologist and she really didn't know what it was but made a comment about it being systemic since so many different factors are involved. I have had a lot of lightheadedness/dizzyness with some vertigo and that can last for hours. The neurologist has ordered an EMG/NCT and a vestibular test.

When I think back, I first went to the doctor in October for severe dry eyes and mouth...which I thought could be Sjogrens (another Autoimmune disease). While people can test negative for antibodies and still have Sjogrens, testing negative for every single inflammation marker and specific test for Sjogrens is making that more unlikely. Also, neuropathies with Sjogrens are more related to elevated autoantibodies. I also can now recognize that I had weakness back then but didn't think much of it...not until all of these sensory things started too and the weakness has gotten much worse since the sensory started.

Im just so scared and have 4 kids at home...the youngest just 11 months old. I work full time, am in school, and just don't know what to do. My husband is great and has been trying to take up the slack from my lack of ability. But I'm just trying to find answers anywhere I can get them.

Does this sound like CIDP? Or does that start in the legs usually whereas mine has been more of a full body weakness (even my jaw has been a little weak in the past day or 2 but now that I think about it I remember having hard time keeping my jaw open at the dentist back in Dec). I don't think my reflexes have been affected either and I read that they usually are? Do people with CIDP usually have elevated blood markers for inflammation? Also...when people talk about starting treatment early for the best results...what is early? I've had to fight tooth and nail to get into see a neuro as quickly as I did. I have an appointment with a Rheumatologist next week. I've done a holter monitor test for my heart and that can back normal (even though I have very low BP and low heart rate).

Anyway..>I know you aren't doctors and I don't expect a "diagnosis"...just hoping for a discussion about real symptoms rather than the clinical-speak on Google.

Hi Kelly, I'm new here and also newly diagnosed with CIDP. The first thing I was told about it, aside from it being an autoimmune desease that attacks the nerves, is that it is tough to find the cause or source. I'm told that it's different in everyone and the symptoms are hard to track down as they coincide with so many other deseases. Be persistant and do not stop asking questions. I've already have several tests done. My CIDP was diagnosed with an EMG test. They are still doing tests though, a gauntlet of blood work and next is a spinal tap. I'm told that CIDP is a symptom of a desease, but there are often times the cause cannot be found and makes CIDP in itself it's own desease. It's rare, I'm also told, but as I look and research this, I'm finding that there are more finding information every day. Keep asking questions and don't stop. Best of luck to you. ~ Sis