A rude awakening (neuropathy, chemobrain and who knows what else, sigh.

Before I go into this experience I want to remind readers who don't know my history that I am a 25 year survivor of non hodgkins lymphoma so my treatment was that long ago. I had an autologus bone marrow transplant and total body rads on recurrance. I am telling you this because what follows are my symptoms and cancer treatments today are different in many ways so don't read this and assume you will have the same experiences, actually that's a good rule for any symptom anyone has on this board. We are all different and our treatments and disease could be different from the next person's so we can experience
much different scenarios as to after effects of treatments. Just thought I should say that from the getgo. So on with my experience.

OMG. I had an appointment with a new neurologist yesterday and came out of that appointment that I thought would end in 'you have nerve damage' duh and I would leave and wish I would have stayed in bed instead but that didn't happen, well it did but together with a whole lot more I didn't expect.

It would take hours to type out the whole experience so I am really going to try to edit this as much as I can, stop laughing you guys I know editing isn't my forte. lol.

Bottomline is that after a ton of those weird neuro tests like 'tell me when the pin scratch down your leg stops hurting' and 'follow my finger' plus tons more I have never been through before the neurologist comes out with some startling stuff.

On the sharp pin following thingy turned out that the leg that I didn't think was as bad as the other leg as far as numbness was concerned was almost number. Now how the heck can't I tell that, answer - it's numb. That was a mind bender. Then the doc does this test where she said she would move my big toe down and up and I had to tell her which way. Sounded simple enough. But when she did that I realized I wasn't sure if she had moved it or not. I can't tell you how foreign that 'non feeling' was to me. It wasn't the numbness it was this knowing that you had no idea what the heck was being done to your body at any given moment or where the heck a body part was being placed. YIKES.
When that test was done she told me that not only didn't I realize whether my big toe was up or down but actually when she manipulated my big toe there was NO ANSWER FROM ME AT ALL - as if it wasn't happening according to my lack of response. Turns out she actually had to manually move my foot up and down for me to feel my toe going up or down. WOW. JUST WOW.

When she was doing the pin prick test too, another rude awakening about my chemobrain. I mean no secret I have it as you all know if you have read some of my past posts but this was beyond it all. I realized that when she was doing the pin prick test that my recognition of how the pin felt at any given point was delayed in my mind by at least 5 seconds. Because of that I had a hard time following the sensation, just couldn't get the message on how it felt exactly as it was being dragged up my leg. I was so shocked I didn't realize what was happening then, just kept asking her to run the pin along again.

Have any of you experienced this 'delayed response' to stimulus? I have so much pain to the touch that for me this was really startling. I noticed throughout the exam too that this 'delay' in the feeling happened in other things too like her questioning of symptoms etc.

Then, the grand finale - forgetfullness. Oh man. I usually take a symptoms and diagnose list of all my late effects and overall medical history but this time I didn't as I thought we were focusing on neuropathy only but she was all over, which was good but I wasn't prepared. Anywho I go over a ton of my history and when I leave, like about 4 hours later it dawns on me that I hadn't told her one of my most important diagnosis and she had talked of doing tests for it in the exam but it didn't dawn on me even then that I had excluded it. I was diagnosed with lower back disc generation years ago and that contributes to my morphine use daily, major back pain. She was talking about doing all kinds of tests to see what's wrong with my back and all I told her was 'they think I have arthritis in my back'. DUH, THERE IS SO MUCH MORE. I left out a whole 6 months of investigating my back. Totally forgot. TOTALLY. I was in emergency rooms with it and that was one of the diagnosis and I didn't even mention it. Sigh.

This forgetting major info has happened before with a doc, leads them right down an unpaved road of symptoms for heavan's sake. I was so embarassed when I realized I had done it again and proceeded to do what I do everytime this happens, write a complete list of all symptoms out for the doc and a note telling them what happened but you can imagin how many of them take it. I have seen that reduced credibility factor the next time I see them, like they can't trust the info I give them and it isn't that, it's my freakin memory for an instant then I am back. If it were only small details I forget but it's major points - big stuff. Anyone else experience this? I guess forgetting is forgetting but to forget major input is just horrendous and of course makes the appointments in part a waste of time through omission.

The neurologist did say that there is little doubt I do have peripheral neuropathy which I knew she would and she said that for that there is basically nothing that is going to fix it. However she said that she suspects that I have lower back issues that could require surgery. WHATTTTTTTTTTT???? Something about nerve bundles or something. She will write it all out for my doc and I will get a copy so I will relay that to you guys when I get it. I have to have a nerve conduction test soon first then possibly a CT of my back before she can make a final diagnosis. She said there are at least 2 things going on producing this pain and that's nothing new for me, never one clear answer. You can all relate I'm sure.

I mentioned to her also that I have found that I am tripping more and going off balance and falling to the left or right a fair bit and she said that she would expect that with my neuropathy, apparently something about spacial recognition - or in my case the lack of it due to nerve damage. I was so spun out in that appointment if you asked me my name fast I know I couldn't come up with it.

Since the appointment I have been deep in thought, now dealing with the fact that now I don't even know what the heck my body is doing in parts at certain times, unsure as to whether I will fall lose my balance and realizing there just might not be anything that will be done for it. I mean that concept isn't new for us but somehow this feeling of my body detaching from my psyche is just mind boggling to me.

I am going to messenger her the note and list of my medical history and symptoms but even today after doing that yesterday I realize that I forgot this or that even though I thought the list was complete.

Well I know what you are thinking, so much for brevity eh? lol. Just thought I would share this appointment, as I said I would, to neuropathy sufferers on this board and see what you guys think and what you might have experienced that might be similar.

Guess it's also back to the Memory Clinic here, something seems to have changed with me if yesterday was any indication. Updates to follow after tests are done. Stay tuned. Man.




  • utopia257
    utopia257 Member Posts: 1
    I can so relate to the
    I can so relate to the chemobrain. i was diagnosed in june 2010, finished chemo jan 2011. 8 months or more later i was going thru pictures. i had a total blank on my daughters prom that was in may 2010. i just wanted to cry. there has been many things from atleast a year prior to cancer, the year of cancer, and the year since, that my brain has forgotten. its like i wasnt even there for almost 3 years.
  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi bluerose
    Sometimes I wish I could take some of your pain and just make your life a little easier but I know that is impossible, so as always I can keep you daily in my prayer. Keep your faith because someday as I keep telling myself God will replace these damaged bodies with brand new top of the line ones that live forever with no pain.