Question about progression of CIDP

I'm hoping someone can answer some questions for me. This is probably going to be so boring and long.

QUESTION: I'm wondering how long people can have symptoms, what they are, and for how long before they got to the point that they had trouble walking. I ask this because I have a couple of things going on that confuse me.


MY BACKGROUND: I am going to try to keep this as short as I can, but it will be difficult and it is so messed up. Around 9 years ago I had bad left elbow and forearm pain, and was diagnosed with Ulnar entrapment. I didn't have insurance for the surgery and over the years my hand and arm became very numb. In Dec 2010 I got insurance and the first thing I did was schedule my surgery. By that time I also started having the same thing happen to my right elbow.


Prior to surgery I had an EMG and they said I also had Ulnar damage to my R arm now and needed surgery on both. I was scheduled for surgery to start with my L arm on Jan 15, 2011. But 3 days before, on Jan 12, 2011 I had a heart attack. I had 9 blockages and got 3 stents. Because of this I was put on blood thinners and had to cancel the arm surgery for min. 1 year. In the meantime, I was also placed on statins. I was allergic, had a very bad reaction and sever muscle pain in my legs. I put up with it for months, telling the Dr's, and finally figured out on my own it was the statins. I went through 7 different kinds to finally, 1 1/2 yrs later, find one that worked and didn't cause leg pain.


11 months after my first, I had a second heart attack. By that time I really needed my elbow surgery so they gave me a bare metal stent because I would only need blood thinners for 6 weeks and would be able to get the elbow surgery. Great. But a couple of months after I started getting sick. I was having really bad muscle cramps, numbness tingling, electric shock sensations etc, all over my body. Everywhere. That subsided after a few weeks, but remained in my feet and hands and my feet became very numb but more so my arms. I went off the statins thinking it was that but it didn't help. I decided to have the surgery. They needed a new EMG prior and I mentioned the numb legs and feet too, so they did arm and legs. The results showed that now I also had carpel tunnel in both as well as ulnar. That sounded weird to me. Then they said I also have peripheral neuropathy and needed to investigate why (not on meds, good BP, not diabetic, not obese, nothing that would cause it). I had the carpel and ulnar done on L arm June, 2013.


DEC 2013 – at a bar, only had a few beers. Got up to go to the bathroom (feeling completely fine), lost my balance around 15 steps in, and started feeling sick. I fell through the bathroom door vomiting, collapsed and couldn’t speak or move. Friends came running and thought I had another heart attack. By the time the ambulance got there I was unconscious. I woke up in the hospital. They said I was DRUNK! I was not. After doing bloodwork and seeing I had hardly any alcohol in my blood they suspected a stroke. After I actually woke up, I was kinda of ok. I don’t specifically remember neuro symptoms any different than normal but was in bed for around a week after just in general feeling sick. They kept me 3 days and I had an MRI to check for stroke. They had to do a low dose MRI because of my stents. They said it was the weakest machine they had. The results did not show a stroke. They had no clue what the hell happened to me.


All my weird neuro pains, twitchs, shocks etc., would kind of come and go. Never going away completely but sometimes were worse than others. Since around Jan 2014, I started feeling sick. Not only was I getting many more new symptoms, but I was extremely fatigued. I started gaining weight because I never wanted to get out of bed. My legs hurt so bad, lot’s of charlie horses, much more pain than my arms. But the numbness was much worse in my arms than legs. It is my understanding that CIDP starts in the legs, and is usually not as bad in the arms.


Then end of Feb I started getting really bad headaches. Then beginning of March started with the face. Bad constant eye twitching, it felt like bugs were crawling on my nose, upper teeth hurt, jaw hurt, and it was driving me CRAZY for a week! Finally I called my neuro and made an appointment.(2nd wk March) He suspected maybe MS, but ruled that out because my MRI from DEC showed no lesions (however I have since read that they sometimes don’t with the MRI machine they used on me). He said I might have it in my spine, but that didn’t explain my face issues. We decided to do a lumbar (2 weeks ago). He is on vacation now but said he would get me the results as soon as they were ready. I have a follow up in 2 weeks.


In the mean time I have barely been able to get out of bed the last 2 weeks. Not from bad legs, but from fatigue.


Weds he sent me the results. I have 3 Oligoclonal bands in my spine and 3 in my blood, with the ones in my spine being more prominent. The results said I have GBS, not MS. But he said he thinks I have CIDP and will discuss it at my appointment when he gets back and doesn’t think I need to go to the hospital. Other results show elevated sed rate (75), elevated CRP 17, Liver ALT 80, AST 57, Normal WBC, normal everything else.


So needless to say, I have been on the internet researching GBS/CIDP for days.


Oh yea, my questions… Ha ha… with all this writing, I can’t remember them at the moment (another symptom) and this is too long. I will write more later. If you read this far, THANK YOU!

Read it, so sorry. What’s your question?

I would expect CIDP I have the lower jaw and upper lip issues. Arm and leg issued after carpal tunnel diagnosis . Severe fatigue issues . Difficulty walking and getting up from a seated position. Left ulnar née compression . Etc one month ago I was diagnosed with CIDP after two years of testing. I don’t drink anymore it effects meds. Cymbalta and gabepentine and hydrocodine when it gets to bad. Sorry to hear about your condition it sucks. Also on IVIG . At 10,230.00 per treatment . I am on my 5 th treatment. $$$$$