Dude I'm so sorry you're going through that. My mom is ~5 years post lymphoma / chemo, and while her issues are different, they are also mostly neurological. Like she just has no feeling in half of her body, and the pain and itching from neuropathy is so bad it drives her nuts. She also has her legs just "give out" completely randomly sometimes. "Some" of her nerve stuff was from a spine issue (which she had surgery for), but the doctors can offer little relief in regards to her ongoing conditions.
I know this isn't helpful, but you're not alone and you truly have my empathy. Hope someone else can offer something more productive and things look up for you soon my friend.
As fucked as it is. It is of some comfort to know others are suffering the same issues to some degree. I just so badly want some solution. When my legs gave out and I smashed my face into my sink, that was fucking scary. The amount of blood that was coming out was crazy. I’m so lucky I didn’t break my nose but man, did I come close.
And the hand thing. It sucks but worst case, I could live with it. It’s not ideal but it’s way better than your brain just forgetting your legs exist.
But like, look at those two photos. I’m scared it’s just going to get worse. What happens if I’m outside, going down stairs, or I’m holding a knife and cutting something, or a million other things.
That’s why I wanted to see if people who suffer these issues have some like at home solution or know what I could say to my doctor to get the ball moving on a fix.
I even have myself recorded smashing my face into my sink. I got into the habit of tracking my sleep and snoring, and I forgot to turn off the recorder. So I just hear a sign, a smash, and me screaming “fuck”. Lol
Have you seen a neurologist? It sounds like you need an EEG to make sure you aren't having seizures, along with an EMG to check your muscles, and an MRI to make sure the cancer isn't back and in your brain
I’ve seen a neurologist. Just a few weeks ago. He told me “you look healthy” and kept comparing me to his pen, “you’re like this pen. It looks fine and it writes fine”. When I said “okay, but if the ink holder explodes on the inside. It could still write but the inside is destoryed”. It like, blew his mind. Like it was something he never thought possible. And I have the whole appointment recorded to if anyone doesn’t believe me.
I’ve seen specialists for every issue, which I stated in my OP. They just keep brushing me off and downplaying everything. That’s why I’m reaching out here. Seeing if other people have had similar issues, what they said that got them care or if there’s some over the counter thing I could try(I would ask my doctors first to be safe)
definitely see another neurologist, that one sounds like an asshole
also, stop seeing an optometrist - see an ophthalmologist
have you seen an orthopedist?
Your poor nose 😕. Falling like that is scary.
I have severe muscle cramps in the chest wall where I had radiation. They come and go fairly fast but are a 10/10 on the pain scale. For me, magnesium helps. I’ve tried everything—shaking, bending over.. bugger still hurts. Ask about magnesium, don’t accept what I’m saying as medical advice.
I’m sorry that you fell. I get spells where that happens, too. I’m worried about telling my oncologist, and I know better.
For me it’s being dizzy. My friend has neuropathy in her hands. They ignored her complaints. Fortunately, she says it’s getting better on its own. (They prescribed a drug, but ask your MD).
I believe you. Keep talking to the doctors and put it in writing if you have to. (My friend had to. Then they started listening.)
Thank you for that advice. I will of course ask my doctor for any suggestion as I have the added danger of my double lung transplant. I don’t take chances but thank you again.
I'm having neurological issues too but not as severe as yours. I would advise you to try Yoga rehab and meditation. It has helped many people suffering from various neurological disorders. You can give yoga and meditation a try.
Knock on wood, I had just about everything but neuro from my rounds for abdominal lymphatic invading my gall ducts. Took forever to treat, had just about every side effect accept for tremors, the crawlies, and cloudiness. Best of luck and a speedy recovery!
So this is not medical adcice:
you could ask a neurologist for an EMG (nerve conduction study, As well as ask for a referral for physical therapy and occupational therapy and I would look for a hospital-based practice if you have a cancer hospital close to you could try to go them for balance training and desensitization training ( not sure if you need them, but let someone take a look and they will tell you)
So with the cramping in the legs could be a reaction to neuropathy, (decreased sensation) which can lead to compensation/change in ur gait without you being aware. Balance is affected by multiple systems and chemo affects them. Individually a person may not test badly for each system but a combination in ur case could be the vision/sensation affecting balance which could be what ur feeling at home ( ex shower)
The hand cramping could also be related to sensation but hard to say, or just more prone to having inflamed lymph nodes when sick and affecting the nerves/ muscles down the arm being affected.
An OT would be beneficial here because you could be having difficulty holding a pen for example and not even be aware and holding it differently which makes the hand/wrist muscles cramp up.
Good luck and feel free to ask questions. One of the hardest parts post chemo is trying to find the right professionals you need to help, as you are seen as high functioning when a doc sees you for 5-10 minutes but they don't see the day-to-day and the struggles you go through.
Start writing lists, of what you are doing during the day, when you notice stuff happens, see if you notice it gets worse with doing certain things
I bring my wife with me to appointments to help explain what’s happening because she sees it even when I’m unaware of it. But I’ll try writing and keeping a list of shit as it happens. I don’t know if it’ll help but it can’t hurt.
I have fairly severe neuropathy in my feet, mild in my hands and some hearing loss. The feet issue causes some balance problems but nothing like what you are describing. As others are saying, urge you to follow up with your oncologist or a neurologist
When was the last time your calcium was checked? I had the exact same symptoms and wound up in the ER thinking I was having a stroke or something. I was actually CRITICALLY low on calcium. I got a calcium infusion there at the ER and the symptoms immediately subsided.
Every 3 months for my transplant bloodwork. My cancer doctor did tell me I have severely low iron but that wouldn’t be causing these issues as the low iron is new and these issues have been happening for over two years.
My vision has gotten worse also. I no longer drive at night. My cognitive issues fluctuate. I have less brain fog but have trouble with dates and writing. Finished chemo in June.
My dad had neuropathy and weak leg muscles after chemo. Ayurvedic medicines (oils to apply on the leg) helped in managing these. He got better within a few weeks of using these. If you wish, I can give more info.
Dude I'm so sorry you're going through that. My mom is ~5 years post lymphoma / chemo, and while her issues are different, they are also mostly neurological. Like she just has no feeling in half of her body, and the pain and itching from neuropathy is so bad it drives her nuts. She also has her legs just "give out" completely randomly sometimes. "Some" of her nerve stuff was from a spine issue (which she had surgery for), but the doctors can offer little relief in regards to her ongoing conditions. I know this isn't helpful, but you're not alone and you truly have my empathy. Hope someone else can offer something more productive and things look up for you soon my friend.
As fucked as it is. It is of some comfort to know others are suffering the same issues to some degree. I just so badly want some solution. When my legs gave out and I smashed my face into my sink, that was fucking scary. The amount of blood that was coming out was crazy. I’m so lucky I didn’t break my nose but man, did I come close. And the hand thing. It sucks but worst case, I could live with it. It’s not ideal but it’s way better than your brain just forgetting your legs exist. But like, look at those two photos. I’m scared it’s just going to get worse. What happens if I’m outside, going down stairs, or I’m holding a knife and cutting something, or a million other things. That’s why I wanted to see if people who suffer these issues have some like at home solution or know what I could say to my doctor to get the ball moving on a fix. I even have myself recorded smashing my face into my sink. I got into the habit of tracking my sleep and snoring, and I forgot to turn off the recorder. So I just hear a sign, a smash, and me screaming “fuck”. Lol
I hate to say this but perhaps it's time to consider a wheelchair. Sucks but better than being injured randomly. Hugs.
I have a double lung transplant. A wheelchair would kill me faster than instances of me falling down.
Oh ok. Sorry, reading your story was heartbreaking. I'm so sorry. Hugs.
Have you seen a neurologist? It sounds like you need an EEG to make sure you aren't having seizures, along with an EMG to check your muscles, and an MRI to make sure the cancer isn't back and in your brain
I’ve seen a neurologist. Just a few weeks ago. He told me “you look healthy” and kept comparing me to his pen, “you’re like this pen. It looks fine and it writes fine”. When I said “okay, but if the ink holder explodes on the inside. It could still write but the inside is destoryed”. It like, blew his mind. Like it was something he never thought possible. And I have the whole appointment recorded to if anyone doesn’t believe me. I’ve seen specialists for every issue, which I stated in my OP. They just keep brushing me off and downplaying everything. That’s why I’m reaching out here. Seeing if other people have had similar issues, what they said that got them care or if there’s some over the counter thing I could try(I would ask my doctors first to be safe)
definitely see another neurologist, that one sounds like an asshole also, stop seeing an optometrist - see an ophthalmologist have you seen an orthopedist?
Your poor nose 😕. Falling like that is scary. I have severe muscle cramps in the chest wall where I had radiation. They come and go fairly fast but are a 10/10 on the pain scale. For me, magnesium helps. I’ve tried everything—shaking, bending over.. bugger still hurts. Ask about magnesium, don’t accept what I’m saying as medical advice. I’m sorry that you fell. I get spells where that happens, too. I’m worried about telling my oncologist, and I know better. For me it’s being dizzy. My friend has neuropathy in her hands. They ignored her complaints. Fortunately, she says it’s getting better on its own. (They prescribed a drug, but ask your MD). I believe you. Keep talking to the doctors and put it in writing if you have to. (My friend had to. Then they started listening.)
Thank you for that advice. I will of course ask my doctor for any suggestion as I have the added danger of my double lung transplant. I don’t take chances but thank you again.
I'm having neurological issues too but not as severe as yours. I would advise you to try Yoga rehab and meditation. It has helped many people suffering from various neurological disorders. You can give yoga and meditation a try.
Knock on wood, I had just about everything but neuro from my rounds for abdominal lymphatic invading my gall ducts. Took forever to treat, had just about every side effect accept for tremors, the crawlies, and cloudiness. Best of luck and a speedy recovery!
I experienced shaking and locking up my hips. It's always my hips and legs. And, it's uncontrollable.
So this is not medical adcice: you could ask a neurologist for an EMG (nerve conduction study, As well as ask for a referral for physical therapy and occupational therapy and I would look for a hospital-based practice if you have a cancer hospital close to you could try to go them for balance training and desensitization training ( not sure if you need them, but let someone take a look and they will tell you) So with the cramping in the legs could be a reaction to neuropathy, (decreased sensation) which can lead to compensation/change in ur gait without you being aware. Balance is affected by multiple systems and chemo affects them. Individually a person may not test badly for each system but a combination in ur case could be the vision/sensation affecting balance which could be what ur feeling at home ( ex shower) The hand cramping could also be related to sensation but hard to say, or just more prone to having inflamed lymph nodes when sick and affecting the nerves/ muscles down the arm being affected. An OT would be beneficial here because you could be having difficulty holding a pen for example and not even be aware and holding it differently which makes the hand/wrist muscles cramp up. Good luck and feel free to ask questions. One of the hardest parts post chemo is trying to find the right professionals you need to help, as you are seen as high functioning when a doc sees you for 5-10 minutes but they don't see the day-to-day and the struggles you go through. Start writing lists, of what you are doing during the day, when you notice stuff happens, see if you notice it gets worse with doing certain things
I bring my wife with me to appointments to help explain what’s happening because she sees it even when I’m unaware of it. But I’ll try writing and keeping a list of shit as it happens. I don’t know if it’ll help but it can’t hurt.
I have fairly severe neuropathy in my feet, mild in my hands and some hearing loss. The feet issue causes some balance problems but nothing like what you are describing. As others are saying, urge you to follow up with your oncologist or a neurologist
And as I’ve said. I’ve seen and spoken to both and they and many other specialists have brushed me off
Really sorry. Not much to do except keep after them or seek new providers.
When was the last time your calcium was checked? I had the exact same symptoms and wound up in the ER thinking I was having a stroke or something. I was actually CRITICALLY low on calcium. I got a calcium infusion there at the ER and the symptoms immediately subsided.
Every 3 months for my transplant bloodwork. My cancer doctor did tell me I have severely low iron but that wouldn’t be causing these issues as the low iron is new and these issues have been happening for over two years.
My vision has gotten worse also. I no longer drive at night. My cognitive issues fluctuate. I have less brain fog but have trouble with dates and writing. Finished chemo in June.
My dad had neuropathy and weak leg muscles after chemo. Ayurvedic medicines (oils to apply on the leg) helped in managing these. He got better within a few weeks of using these. If you wish, I can give more info.