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Old 09-20-2022, 09:28 PM #1
cyoung35 cyoung35 is offline
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Default 3months in-update

So its officially been 3 month on my neuropathy journey. My neurologist couldn't find anything so now i'm with a Hematologist Oncologist who immediatly said my B vitamin levels are normal ,but low range normal...still don't have anything really definitive. I still haven't regained movement in my 4 toes, my leg is still hypertensive, and now i'm having some pain in my thigh that happens when i stand to long..that's new. My neuropathy effects my motor and sensory abilities on my right foot and leg(below knee cap) I haven't worn closed toes shoes since july ,because those toes and my ankle just feel so uncomfortable being touched by anything ,but crocs clogs. I can drive myself for 20 minutes now ,but my nerves flair bad after 20 minutes and i can only get up to 20 mph(thank god for cruise control). I've tried compression socks with arch support for people with neuro/diabetic pain..i don't have diabetes fyi. I don't know guys..I find myself becoming more bitter and frustrated day by day. I'm working on a way to leave my current job which is active for a more sit down job because i feel like i'm dying or close to dead by the end of day. In the meantime, I think i want to try legit shoes so i can use my foot drop brace. does anybody have brand suggestions?
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Old 09-23-2022, 02:52 AM #2
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Quote:
Originally Posted by cyoung35 View Post
So its officially been 3 month on my neuropathy journey. My neurologist couldn't find anything so now i'm with a Hematologist Oncologist who immediatly said my B vitamin levels are normal ,but low range normal...still don't have anything really definitive. I still haven't regained movement in my 4 toes, my leg is still hypertensive, and now i'm having some pain in my thigh that happens when i stand to long..that's new. My neuropathy effects my motor and sensory abilities on my right foot and leg(below knee cap) I haven't worn closed toes shoes since july ,because those toes and my ankle just feel so uncomfortable being touched by anything ,but crocs clogs. I can drive myself for 20 minutes now ,but my nerves flair bad after 20 minutes and i can only get up to 20 mph(thank god for cruise control). I've tried compression socks with arch support for people with neuro/diabetic pain..i don't have diabetes fyi. I don't know guys..I find myself becoming more bitter and frustrated day by day. I'm working on a way to leave my current job which is active for a more sit down job because i feel like i'm dying or close to dead by the end of day. In the meantime, I think i want to try legit shoes so i can use my foot drop brace. does anybody have brand suggestions?

catastrophize

verb
view or present a situation as considerably worse than it actually is.
"traumatic experiences can predispose people to catastrophize"

This may appear rude and insensitive of me to suggest the above but I want you to take a different view about your situation.

What are you doing driving at 20 mph? You have set you own limits. Driving at that speed is dangerous for you and other road users. Either drive at appropriate speeds or take a break from driving.

Poor health brings with it its own stresses and anxieties. However, your symptoms are not the end of the world. I can tell you now that later in your journey you will become bored with noticing your own pains and disabilities. You will just get on with it.

What you are experiencing is tragic, no doubt. However its the way you respond is the key. This is not the end of the world. This is not forever. The body will find a way to heal itself, you will find a way to manage.

Don't take rash decisions based on 3 months in. Take a longer term view. Its understandable to be bitter and frustrated. The injustice of it all. The why me questions. Become detached. See yourself from afar as if a character in a film. How would you want that character to behave?

Keep going. You can get through this.

Best wishes,

Atty
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Old 09-23-2022, 03:35 PM #3
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Hi cyoung,
After reading this post, I get the impression that only one leg/foot or side of body is involved, is that correct? Maybe I misunderstood.

Also, are you saying your Neurologist referred you on to the Oncologist due to your neuropathy?

I don't understand. Do you have other health issues or signs that you haven't mentioned? How about any medications or surgery that you may have taken just prior to your sudden onset.

I can't really offer any brand suggestions for shoes. The only thing I can say from personal experience is that certain lace up type soft shoes help me walk better than sandals or open shoes that don't encase my whole foot. I like soft oxfords/brogues and also ones like Keds that make canvas sneakers but have good support. They're both soft but firm at the same time and encase my whole foot. I would not be able to wear shoes like crocs at all although others here in the past have done.Very inexpensive canvas sneakers don't do the job as they have no support or cushioning. Having said all that, no shoes will take away any of my pain. They just help me walk and keep balance a little better.

Run a search for "shoes" in the search feature and you'll bring up a number of past threads that may be helpful for you.

It's probably different for everyone because neuropathy affects us in different ways. One thing I know for myself is that one needs to adapt. Perhaps you could talk to your job management or HR about your current difficulties at work. They may have other options that will allow you to modify your daily activities in the workplace.

Also, you said your new Haematology Oncologist said your B vitamin levels are normal or low normal. What does that mean? Do you have copies of the test or can you get them because knowing your B12 levels at baseline now would be extremely helpful for you. Do check the B12 thread if you can as it could be very helpful for you if your B12 is very low.

I don't think it's possible to drive at 20 miles / 32 kilometres an hour is it? I wouldn't try that around here. You'd end up with a very large fine. I can't drive anymore for reasons other than neuropathy mainly but I would have difficulty feeling pressure. I live on acreage so the letter box is a long way from my house. One day last week I got in the car and drove up there but I couldn't feel any pressure properly on the pedals so I continue to walk it despite the pain. I don't do it when I'm in really bad pain. Some days are better than others. I have learned to adapt somewhat but it took longer than 3 months that's for sure. I really battled it in the beginning though and felt despondent also. We really can't go there or it takes a hold.

Feeling as if you're dying by the end of the day doesn't sound very good. It sounds as if you're exhausted or something. Check out those blood tests.

So I mainly do wonder, is this sudden onset "neuropathy" in one foot/leg only and did the neuro send you to the oncologist or is that a separate health issue?

Last edited by Lara; 09-23-2022 at 04:49 PM.
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Old 09-24-2022, 02:03 PM #4
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he didnt say that he drives 20 mph. he said he could only drive 20 miles an hour thank god for cruise control. he uses cruise control to regulate his speed because he cannot push the pedal for a long period of time or far enough to go faster.
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Old 09-24-2022, 02:50 PM #5
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ahhh. Thanks echoes.

Sorry cyoung, I misunderstood your sentence about driving.

I had wondered how it was possible to be driving that slowly on the roads.

I drive that slowly on the farm but totally understand how difficult it is to use the pedals due to both numbness and pain. It's impossible for me to drive anymore unfortunately. I always loved driving too. Now that I can't drive I feel a great loss of independence. I get it.
take care

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Old 09-25-2022, 06:39 AM #6
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thank you for clarifying. The only reason i can get around is due to cruise, adapative cruise at that so the car does all the adjustments. The only thing i have to do is time slowing the car down which is 2.5x my normal distnce.
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Old 09-25-2022, 06:58 AM #7
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Lara,

I think a traumatic qualifies when you were enjoying a holiday and 2 weeks later leg is swollen, balance is gone, and all the physical activities i used to enjoy are now extremely difficult to do. My diet was well balanced, every doctor visit prior to this i was in ideal shape. Between 4 mris, an xray of the entire leg, ncs/emg, blood work at the ER + hematology/oncology, physical therapy which is trying to at least restore the lost motor function ,but doesn't have a diagnosis or inkling of one...its a bit much . I understand what you are saying ,but I'm at an extremely bitter stage. I know that isn't healthy For example, i used to be long distance driver/trainer for work, mechanic for a machine that requires specialized training for work( this requires a ladder which i almost fell of off), my job is trying to accommodate ,but as its a 90% physical job i have to smile and deal with it for now. Its hard to become bored with the symptoms as they are unregulated, due to my insurance not paying for some meds, the consistent remainders at work, and a 1 year old child with an active lifestyle. When I said my B vitamin levels were low, its at the extremely low end of normal on any chart. I've also reached the end of my journey with my hematologist/oncologist unless i do a biopsy for a rare bone cancer. The only reason for the bone biopsy is because i have blood disorder that is supposes to present itself in one of two ways and it is presenting a third way which got my case sent to the medical director. I may have to spoke to the neurologist about the biopsy she wanted to do to. which her colleagues, who are 20 years her senior, have been talking to for 3 months have come up with. The only silver lining, and I this quite literally, is that the underlying muscles are healthy.
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Old 09-25-2022, 12:11 PM #8
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i don't know which of your B vitamins are low, but i would start with a good multi B and if its B12 i would start taking oral methylcobalamin B12
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Old 09-25-2022, 12:21 PM #9
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Hi again,

Just to clarify, I did not write the "bitter" "traumatic" "bored" parts etc.
That was someone else.

I actually understand your frustration due to my own medical situations.
I was only trying to understand if there was an underlying cause or ongoing medical condition that may have led to onset of your painful symptoms.

I had sudden onset neuropathy related to a cancer treatment, that's why I was curious about the oncologist that you mentioned.

take care. I only wish you well



Quote:
Originally Posted by cyoung35 View Post
Lara,

I think a traumatic qualifies when you were enjoying a holiday and 2 weeks later leg is swollen, balance is gone, and all the physical activities i used to enjoy are now extremely difficult to do. My diet was well balanced, every doctor visit prior to this i was in ideal shape. Between 4 mris, an xray of the entire leg, ncs/emg, blood work at the ER + hematology/oncology, physical therapy which is trying to at least restore the lost motor function ,but doesn't have a diagnosis or inkling of one...its a bit much . I understand what you are saying ,but I'm at an extremely bitter stage. I know that isn't healthy For example, i used to be long distance driver/trainer for work, mechanic for a machine that requires specialized training for work( this requires a ladder which i almost fell of off), my job is trying to accommodate ,but as its a 90% physical job i have to smile and deal with it for now. Its hard to become bored with the symptoms as they are unregulated, due to my insurance not paying for some meds, the consistent remainders at work, and a 1 year old child with an active lifestyle. When I said my B vitamin levels were low, its at the extremely low end of normal on any chart. I've also reached the end of my journey with my hematologist/oncologist unless i do a biopsy for a rare bone cancer. The only reason for the bone biopsy is because i have blood disorder that is supposes to present itself in one of two ways and it is presenting a third way which got my case sent to the medical director. I may have to spoke to the neurologist about the biopsy she wanted to do to. which her colleagues, who are 20 years her senior, have been talking to for 3 months have come up with. The only silver lining, and I this quite literally, is that the underlying muscles are healthy.

Last edited by Lara; 09-25-2022 at 01:04 PM.
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