Today I had my follow up with the neurologist. I was apprehensive a bit, as I expected him to blow me off after completing the 4 standard neuro tests, with the famous "I don't know". I had the brain MRI, the EEG, the 2 sets of nerve conduction tests, and some specially ordered blood work.
When he went over the results, he said with the exception of a little tale-tell sign in the EEG test, the rest of the tests showed nothing. Then he quickly relieved my mind and said, "now we will continue to hunt this down".
What has been ruled out completely is MS, Parkinson, and Fibro. He feels ALS (Lou Geheig's) is unlikely, but still won't eliminate at this point.
He feels that the chronic pain issue is entirely separate from the neurological issues. He's increasingly believing that the pain issues are indeed CRPS related, but that will involve a different type of specialist to treat.
On the neuro side, this is his current thinking:
1 - based on something he saw in the EEG of the brain waves, he said it could indicate early-onset Lupus. Another horrible disease if it proves to be it. He said it can be caused by severe trauma to the body and nervous system. It mostly effects women, but men do get it. Lupus is known as the "great imitator", as the symptoms mock about a dozen other disorders, and it's very difficult to diagnose properly.
2 - Myasthenia Gravis - he is most suspicious of this so far, he said it best fit the symptoms of all the muscle fatigue and how its spreading in the body. Also, very difficult to clearly diagnose
3 - He mentioned an ultra rare neurological disorder, cant' remember the name to save my life, that only happens with people that have had multiple cancer events/multiple radiation events. He said the combination of the two can cause a permanent damage to the signals from the brain, and acts as an autoimmune issue. For this, he has to order some special blood work that he said is rarely ever done.
I am having the blood work done in the morning at a private hospital that can do it. Then on Monday, he's set up still another special MRI, this time, of just my neck. He said there are major nerve junction blocks at the top of the spine in the neck area, that split up signals from the brain that control the leg muscles. This is a first for me, and the only time I will have had 2 MRI's done in the same month.
The best part of the visit to me, was that he said he was just beginning his search in depth, and that he was not going to quit on me to he gets an answer. He said that neurology is one of the most difficult disciplines in medicine, because of the complexity, and how that often there are not clear cut answers or easy diagnosis. He repeated, that often diagnosis are made from a lengthy process of elimination of other maladies, until it can be narrowed down and down to get the right one for the symptoms.
Been seeing him about a month now, and for the first time in his presence, my right hip collapsed right in front of him as he was walking me to the scheduling desk. Glad he finally saw what I was dealing with first hand.
Yesterday I had a pretty good scare at PT at the Oncology Rehab (btw - coming up on the 3 year mark in rehab, hard to believe). Therapist and I were walking my normal 3 indoor laps. She always walks to my right, and I was using my heavy duty rolling walker as required now. In our route, its mostly all left hand corners, and virtually every single time I had to make a left turn, the left hip gives out. However in the past week, there are times that the hip, the upper and lower leg down to my ankle - has zero feeling, and there is nothing on that side to support me. On the typical 3 laps, and she has counted before, as many as 18 times one hip or the other will give out, or both at the same time, with the walker in use.
We were about done with the third and headed back to the rehab department when I had to make a right turn. Both hips and legs gave out at the exact same time (down to my ankles) and since I was going right, me and the walker uplifted and I went crashing into my poor therapist. It was her body that kept me from crashing on the hard floor. Felt bad for her, bet she had all kinds of bruises after that), but she took it in stride. So the problem is getting worse, not better.
The only other clue I gave the neuro doctor, was is that as I became more and more fatigued during the day, the number of incidences increase. Especially if I have to stand in place for more than 5 minutes, or walk more than 10 minutes, i.e. walking through a grocery store, Wal-Mart, etc. It has happened in my house, but it's rarer, because the distances are tiny. Though stepping down 2 steps into our dining room will catch me by surprise at times, so now I keep a cane in the house. Plus one in each vehicle, and the walker I keep in the trunk of my car. I will no longer go into a store unless I am holding onto a shopping cart with both hands, or using the walker.
The doctor said I need to cut back exposure to harm, and to stay off my feet more and more, which is difficult for me to do. I am not one that can just lay around and do nothing, I am always busy with something.
So that's the latest. The quest continues, and I will be trying harder to avoid breaking my hips or worse.
On another note, the VA just shipped me my first order of Ostomy supplies and meds. Just this small amount will save me about 80 bucks a month. Every little bit helps. Still waiting for the VA to arrange my first dental appointment, had another tooth crumble apart recently.
Certainly got a lot to deal with, but I am a long way from giving up. Still dealing with pain levels some days in the 4-7 range (even on the meds), severe chronic fatigue (5-10 most days), and the fact that as of the end of the year dealing with a PSA above 80 and climbing. Least with all this, I never get bored, lol.
David