Year Long Progression of Neurological Symptoms. Exhausted. Angry.

Wow, you have a lot to deal with. I’m kind of in the same boat, since chemotherapy treatments; the last one was way back in early June. I got neuropathy in my feet and hands. I luckily just have the numbness, mostly in my left foot; which doesn’t seem to be getting any worse. My main symptoms are within my abdomen and head. I also have tinnitus. My head symptom is the brain fog. It’s hard to explain what’s going on in my abdomen. It’s like a constant turmoil feeling. No pain involved. In the beginning there was a tightness or constriction feeling around the rib cage and back area. Everything else has been ruled out. Tests were done at the gastroenterologist and thoracic surgeon fields. My oncologist seems to be stumped about my abdominal symptoms. He has prescribed the medication; Duloxetine for the neuropathy 30 mg, but that made me feel very lightheaded. I’m going to ask for the lowest dosage and see what happens with it. I don’t know if this will help with my abdomen symptoms or not.

Thanks.
Diagnosed with FND. Directed towards psychiatry/psychology. 3 month waiting period. Given handouts that direct me towards FND hope website and neurosymptoms.org. In all honesty that’s it… and that’s from the functional neurology clinic at MGH. Why do you ask?

I’m sorry to hear this. As if the chemo wasn’t enough. 😞 Does your tinnitus come and go? And yes the brain fog is in many ways debilitating. I can’t process info, short term memory non existent… I find myself making adjustments at work to hide it. I must also say that there are often times where I just feel mentally “off”. I don’t feel good. Feel distant, disconnected, “gross”. Maybe it’s a form of disassociation, I don’t know. I’m not sure I have the words for it. I’m not giving up on getting some normalcy back, but for the time being I wait for the pockets (few hours, few days) where the fog lifts and my body isn’t acting crazy.

The is with me 24/7. It came on when I started taking Blood Pressure medication; metoprolol. Prescribed to me after having an a-fib episode. That’s when I was told about the breast cancer. After my first treatment I got c-diff and then all the other symptoms became noticeable; I lost weight guickly, the symptoms in my abdomen and brain fog are with me constantly. I’ve had surgery a month ago for breast implants since having my mastectomy on the right breast for the cancer. I had breast cancer 26 years ago on the left breast. So while getting the implant put in the right side, he also put in a new implant on the left, because of the age of it. I’m almost positive that my symptoms with the abdomen and brain fog are both related to the chemotherapy treatments; which there were only two treatments because my body couldn’t handle the chemotherapy medication. My oncologist acknowledges that it gave me neuropathy in my feet and hands, but is stumped about what is going on with my abdomen. He just prescribed medication; Duloxetine, which I tried, but I got very lightheaded and stopped. 30mg . I’m now going to ask for the 20mg and give it a try. This is supposed to help with the neuropathy pain. I actually don’t have any pain, just numbness in feet and hands. So I really don’t think this will help relieve my other symptoms. Any ideas on this are welcoming.

Hello:
I really wasn't kidding about the spider hallucinations. I had one so vivid I could almost pick to each individual hair on the body. And very colorful. My hallucinations are all over the place,, Many nature like spiders, birds, squirrels come to mind. Also doorbells, fire alarm, female voices. My newest one is a creaking door. I heard it when in the bathroom. I Italy thought it was the linen closet door and looked to see it was closed. That one was a bit unnerving. The others I can reason with myself it isnt real. My way to tell if visual - there is way too much clarity and detail the I wouldn't normally see.

The jerks have no rhyme or reason. I can also go for days or weeks with out one then whammo!!Big jerk. Sometimes almost knock something over.
I definitely have sleep problems. I was taking Clonanzapam for a few years which helped somewhat but wasn't a great help. Those have slowed down quite a nit with new meds.

Ahh - the smells. Yes - I wish I could smell a nice bbq dinner. But -no - I hate the smell of cigarette smoke. Guess what I smell sometimes - yup that wonderful small. Mainly I have a king oof chemical or burnt plastic smell.

And along with the sense of smell gone - my sense of taste is all but gone. This has been gradual since 2010. Now taste gone except for the basic tastebud stuff - sweet, sour, bitter etc. No real flavors. I eat with my eyes, textures and memory. I look at it and know what it is, I know what texture to expect and remember what it should taste like. With that info I can try to make myself hallucinate to taste it 🙂

I have found relief from the pain, stiffness, mood swings, sleep, relaxation, tremors and more.
My neurologist has observed me before and after and can tell a definite difference. He cannot advocate for it - but he said he isn't discouraging it.

I understand there is no cure or magic pill to make this stuff go away. My neurologist calls whatever we do to get relief palliative care. That can be PT, exercise, prescription drugs, etc.

I say this and hope this will not reflect negatively on me.
I have been a medical marijuana patient since 2017. My wife first words were - I have my husband back. Getting with the right MMJ doc can make a big dirfference. He/she will review your history and determine if you would benefit.

Im not one that does well with heavy medicated feelings. It took a little while - its like a prescription med - you have to pay around with a couple and adjust dosages to get the relief you are looking for.
Once you find the right formulation you are off to the races.

If you or anyone else reading this wants more detailed info on my experience and "words of wisdom" before your first trip to the dispensary I'd be glad to answer.

I'm not sure where you are and if they have a medical program.
Lots of stigma attached to it - but if it helps and doesn't effect me negatively (like many other prescription meds) Im all for it. And the fact my neurologist didn't dissuade me from it is a good thing.

I used to sit back and think I am trapped in a failing body and can't get out. Learned to deal with it over the years.
Now that the mind is also failing - I'm stuck in a body and mind that are failing.

The MMJ helps me deal with life one day at a time while relaxing with less pain, anxiety and I want to go out of the house and be around other people more. Something that hasn't been on my top ten list - was wanting to be more isolated and less social. Now that is better.

Stay safe and well.

Peace
Larry H.

One other thing - have you ever talked to a good chiropractor? I was checking into all avenues for some relief and finally went. I'm glad I did. most of my back and neck pain is gone or much more tolerable. Less tingling in the legs and feet. Feel a little better on the digestive tract.
Might be worth looking into if you haven't tried it.
Helps with several things but certainly not all.

Peace
Larry H.

When I was first diagnosed, the pain was so terrible.. If my husband even sat on the bed, I couldn't bear it. It has been 12 years now and some days are still tough with a flareup, but not as bad. This morning I got up and thought I should take a pain pill as usual, but then I noticed that I was not in any pain! This happens now and then, enough that I want to encourage you that it may lessen over the years. I think it will. Yes, hallucinations are occasional. I don't want my husband to leave me alone overnight because they get worse at night... God bless you and stay strong.

Please check superficial siderosis

Thank you Rachel. I appreciate all your insight and guidance. One thing that I struggle with is "Once acute issues turn chronic from this upregulation, there is nothing left but to learn how to manage symptoms and find the best quality of life." This sounds less than promising. Based on your understanding, is there any way to disrupt those faulty connections? I couldn't live like this. Just being honest. There is no consistency or pattern, except there is something every day...and I definitely seem to be trending in the wrong direction. If my leg was weak every day, I could live with that. If my feet burned every day, I could live with that. This is something that doesn't allow you to plan for the day as you don't know what you'll experience, you just know it won't be fun. Where did you learn to differentiate CSS from FND?

@sherwood06 I do not mean to cast doubt, and am in no way suggesting things can not or will not improve. I am a big proponent of keeping hope alive, and learning all you can while doing so.

CSS and FND, both being neurological disorders, appear to be similar in that each are treated with cognitive behavioral therapy, physical therapy, reduced chemicals and emotional therapy. You might find this article from Mayo helpful:

I have no medical training, only experience with my personal neurological health journey concluding with CSS and Mayo Clinic's 3 week Pain Rehabilitation Center (PRC). Here is information about PRC:

How are your doctors currently helping you? What is your plan moving forward to manage your present symptoms?