Is it Really CIDP or... Is it Something Else?

I've been doing a lot of thinking since that fateful neuro doctor's appt. And I'm really beginning to wonder if that doctor is right.

Now maybe I'm just in denial, you know, that first stage of the grieving process? Or maybe not. But here's what's on my mind:

When Bob had full-blown CIDP, he had muscle weakness in his legs, tingling and burning in his feet and hands. His hands would tremble and he had a difficult time holding a pen or pencil without shaking. His feet and legs would swell up. He complained constantly of pain in his legs. He had difficulty sleeping at night. And he couldn't hold up his head.

Now Bob doesn't have any of the above symptoms except the inability to hold up his head, but now his head is tilted to the left (unaffected) side instead of straight down as it was with the CIDP. So it's a more like "cervical dystonia" than a basic "head drop".

OK, I did ask the neurologist about this, told him that Bob had no other symptoms besides the head drop and the head drop was different. The neuro doc said it didn't matter, that he was positive it was CIDP and sometimes CIDP just "attacks one specific area of the body."  (Mind you, he didn't run any new tests.)

I asked him why would the CIDP return and act differently this time. He gave me an odd look then told me that the CIDP was never gone, it's always been active and it's just getting worse.

Now wait a minute, I'm thinking, because this is the doctor who told me the CIDP was gone after Bob's stroke. (Look in my "popular posts" and you'll see that post there, back in 2011, and believe me, I did not make that up.)

Since that appointment, we had a PT evaluation from the home care agency. This is the same physical therapist who worked with Bob a couple of months ago. The neuro doc had ordered PT for Bob's shoulder impingement. Anyway, I like this therapist and do trust her judgement. This is what she thinks:

She said the reason Bob is leaning to the left is most likely because of the shoulder impingement, he's basically leaning away from the painful/frozen shoulder. She's not sure if it's an impingement or "frozen shoulder" or subluxation, and really, she said, the doctor should have ordered OT not PT for this problem. She asked if the doctor ordered x-rays and I told her that he did not. She asked a lot of questions including what position did Bob sleep in at night. I told her that because the head of his bed has to be elevated because of the all-night feeding tube pump, he always ends up sleeping in a reclining position with his head down, chin resting on his chest, leaning toward the left. Ah ha! she said, if one sleeps in a position like that for a long time, it certainly is going to stiffen your muscles and mess up your posture....

Hmmm.

Then this morning I received an e-mail from a friend of mine in Minnesota who is also caring for her husband who is a stroke survivor. She told me she had read my blog post and, most interestingly, she knows a woman who is caring for her brother who also suffered a very massive left hemisphere stroke about the same time Bob did. And just recently, her friend's brother has also started "slump over" with his neck leaning to the left side....very much like Bob is doing.

Hmmm. Again...

So now I wonder is it CIDP? a posture problem? or something stroke related? And how do I figure this out? The last time we had to go for a second opinion from a neurologist, we had to travel some 200 miles all the way to Gainesville to a speciality neuro hospital---which would be an awful ordeal in the wheelchair transport (not to mention, bloody expensive).

Right now, the PT is putting in an order for OT to come out and evaluate the shoulder problem. She's also requesting a different PT to come out and assess the situation and see if that PT has any new/different ideas....

And me, I am just sort of confused. I certainly wish I could ask Bob his opinion, if he thought it felt like CIDP but when I do, I get different answers, including both "yes" and "no" and then just many complaints about his neck hurting.

And I think that's the worst thing about aphasia, that Bob can't tell me what's going on, he can't explain how he feels and so, I am just always guessing...