Peripheral neuropathy

[Poohbear5]

Was recently diagnosed with PN and wondering how I will be able to deal with this on our trip. Feeling overwhelmed. Anyone else had PN and have some tips?

[clanmcculloch]

I suspect my PN is much less significant than yours as I've never had to actually do anything differently for mine. It's more of a sensation for me rather than a limiting factor. For me, it's just a feeling of my fingers and toes falling asleep and dealing with that really annoying almost painful pins and needles feeling. I'm lucky (I guess, if you can call it that) that mine's treatable as it's "only" pernicious anemia causing it (and unfortunately the PA is a symptom of bigger problems but that's a whole other discussion). I still don't think I'm on the right injection frequency/dose yet but it's certainly an improvement as I don't get it often any more. Do you know the cause of your PN?

I guess my question for you is this. What problems does your PN cause for you? Is it "only" an annoying/kind of painful sensation in extremities like mine or does it prevent you from extended walking, extended time on your feet or extended use of your hands? Advice for WDW varies based on what issues you have.

[Piper]

I also have PN in my hands, arms, feet and legs. I use an ECV in my daily life (for other things,) so I don't do anything different at WDW. I am very used to it and the PN in my feet often causes foot drop. So I am extra careful.

Sewing is something I love to do and it has been a real challenge lately because the PN causes my hands and arms to fall asleep while I am trying to sew. It made making my gifts for my upcoming cruise a slow process! But they are finished!!!!

[Poohbear5]

I do have the burning tingling, pain is a big factor and great difficulty walking after awhile as well as dropping things nonstop.

My diagnosis was idiopathic but going to get a second opinion to see if they missed something treatable. I am not diabetic, do not drink, etc. Very frustrating as I am not even 50 years old yet. I look like an old lady some days!

Right now, I try to walk daily, early in the morning to keep my legs from getting weak. But our last trip to Disney in 2009, by mid day, I could barely walk and had pain shooting up my legs.

I do have a handicapp placard that I only use at the end of the day when things flare up. Sometimes I have to get my shoes off the min I get in the car because the burning is so irritating.

We are thinking of going Jan Feb so it will be cooler and less waiting in line. Standing still on concrete is very difficult.

My husband suggested EVC but was really nervous because of coordination issues and concerned about being in a crowded space with so many little ones.

[clanmcculloch]

Do you have somebody who is able to push you in a wheelchair? I'd normally recommend an ECV but I don't know if you'll be able to maintain the necessary hand/arm control for the duration of the day if you're having problems with dropping things. Of course if you plan appropriately, you could plan for only being in the parks for whatever period of time you predict being able to handle when using an ECV (those of us with autistic kids make these kinds of plans but our thresholds are based on coping skills rather than motor strength/endurance but same concept). You definitely want to have a mobility device. I really do think that a wheelchair would be better for you. If your DH can't push, any chance you could bring a friend/family member with you or maybe hire somebody to help out? I'm thinking of somebody who works at maybe a babysitting type service in Orlando though I don't know anything about that option; I'm just thinking out loud.

I always struggle with the concept of things like this being idiopathic. There are plenty of reasons for PN besides diabetes and alcohol. Have you had the full range of vitamins and minerals test? Any circulatory tests done? Tested for celiac? Do you have any other symptoms beside the neuropathy? I know, I'm getting totally OT; sorry about that.

[Poohbear5]

Originally Posted by clanmcculloch

Do you have somebody who is able to push you in a wheelchair? I'd normally recommend an ECV but I don't know if you'll be able to maintain the necessary hand/arm control for the duration of the day if you're having problems with dropping things. Of course if you plan appropriately, you could plan for only being in the parks for whatever period of time you predict being able to handle when using an ECV (those of us with autistic kids make these kinds of plans but our thresholds are based on coping skills rather than motor strength/endurance but same concept). You definitely want to have a mobility device. I really do think that a wheelchair would be better for you. If your DH can't push, any chance you could bring a friend/family member with you or maybe hire somebody to help out? I'm thinking of somebody who works at maybe a babysitting type service in Orlando though I don't know anything about that option; I'm just thinking out loud.

I always struggle with the concept of things like this being idiopathic. There are plenty of reasons for PN besides diabetes and alcohol. Have you had the full range of vitamins and minerals test? Any circulatory tests done? Tested for celiac? Do you have any other symptoms beside the neuropathy? I know, I'm getting totally OT; sorry about that.

Yes, my husband could push if needed but sounded like it might get tiresome for him. Might try half a day of chair? Our daugther and son-in-law are going to meet us for a few days, was hoping not to have to do a wheel chair in front of them. Thinking maybe I can do some people watching from a bench or something and do more attractions with hubby later in the week. Shooting for a 10 day trip so the pace will be easier.

Have had all the vitamin and mineral tests,every blood test under the sun, emg studies, mri's. The first mri did show some lesions but the neurologist said it was probably migraines.

We are searching for a neurologist in Boston to get a second opinion. Have had lots of other symptoms, just kind of feel like they found one thing that is definitely off, so no need to look further.

Had several falls over the summer and injured my arm and ankle, the balance issues are blamed on neuropathy.

[peemagg]

Something to remember is that just because you have a wheelchair all day, doesn't mean that you have to keep yourself planted in it all day. Just use it to sit and rest when you need to.

I have a disease of the nerves kind of like what you are describing, and can only walk for short periods of time. I walk behind my chair as long as I can and then I sit. This way I get the best of both worlds, and it is easier on those that I am with.

[KPeveler]

My suggestion is to not wait to get that wheelchair if you are going at a crowded time - you would hate to get to the point you need it, and then have them run out of rentals.

I suggest either an ECV or an off-site rental. One thing that sets off my PN problems is vibrations and WDW does love to make their surfaces "authentic." The park chairs actually rather stink when it comes to ease to push and comfort. If you rent off-site, it will not only be easier to push, but may reduce vibrations a bit.

I tell people who are unsure to rent a wheelchair, put all the "stuff" we inevitably carry in the parks in the chair, and then just sit when you need it - that may be a line in a restaurant, a few hours at the end of the day, or just a more comfortable spot than a backless bench.

On buses you can either ride in a chair or you can fold it and sit in a regular seat. Also, most wheelchair will fit in a mid-size or better sedan (you may need to take armrests or footrests off to make it fit).

Don't be afraid to ask for the help you need. Disney is better than almost anyone I know when it comes to creative solutions for people with illness and disability. And, as a full time wheelchair user, I can tell you I can experience everything in the parks just as well as my AB family members!

[Poohbear5]

Thanks for all the good tips. Sometimes it 's a little hard asking for help, guess I need to get over it so we can enjoy our time away.

[clanmcculloch]

Originally Posted by Poohbear5

Yes, my husband could push if needed but sounded like it might get tiresome for him. Might try half a day of chair? Our daugther and son-in-law are going to meet us for a few days, was hoping not to have to do a wheel chair in front of them. Thinking maybe I can do some people watching from a bench or something and do more attractions with hubby later in the week. Shooting for a 10 day trip so the pace will be easier.

Have had all the vitamin and mineral tests,every blood test under the sun, emg studies, mri's. The first mri did show some lesions but the neurologist said it was probably migraines.

We are searching for a neurologist in Boston to get a second opinion. Have had lots of other symptoms, just kind of feel like they found one thing that is definitely off, so no need to look further.

Had several falls over the summer and injured my arm and ankle, the balance issues are blamed on neuropathy.

PLEASE do not forgo a wheelchair out of embarrassment in front of your DD and DSIL. They want you to be able to enjoy yourself with as little pain as possible. I assure you that this is what will be most imporant to them. They can even help out with pushing.

As for the lesions, that actually makes me thing MS or celiac as brain lesions show up in MRIs of patients with both diagnoses and both can cause PN. I'm not familiar with lesions from migraines but there's a lot I don't know about migraines so it could just be that I'm not well enough versed on them. I wish I had a recommendation of a doctor for you but I haven't gone the neurologist route. I have a great GI doctor in southern NH but not a neurologist (my PN is ultimately related to GI issues and if I was going to investigate further I'd seek out a rheumatologist rather than a neurologist because I know it's autoimmune in nature). Actually, I did like DD's neurologist but I didn't get much opportunity to find out how good he is. He referred us to a neuro-psychologist as we were seeing him for possible ASD related issues. I do have a friend that sees this guy though (the friend who recommended him) and she swears by him for her migraines and I think also some PN. If you want I can PM you his info. He's in Derry NH if that's a good location for you since you're in NH and you're willing to commute to Boston.

[carrie6466]

Originally Posted by Poohbear5

I do have the burning tingling, pain is a big factor and great difficulty walking after awhile as well as dropping things nonstop.

My diagnosis was idiopathic but going to get a second opinion to see if they missed something treatable. I am not diabetic, do not drink, etc. Very frustrating as I am not even 50 years old yet. I look like an old lady some days!

Right now, I try to walk daily, early in the morning to keep my legs from getting weak. But our last trip to Disney in 2009, by mid day, I could barely walk and had pain shooting up my legs.

I do have a handicapp placard that I only use at the end of the day when things flare up. Sometimes I have to get my shoes off the min I get in the car because the burning is so irritating.

We are thinking of going Jan Feb so it will be cooler and less waiting in line. Standing still on concrete is very difficult.

My husband suggested EVC but was really nervous because of coordination issues and concerned about being in a crowded space with so many little ones.

I'm 46 and was diagnosed with PN about 3 years ago. It's horrible burning and tingling in my feet and legs. I also have the problem with dropping things. I am not diabetic, either nor do I drink. They really couldn't find a reason for it, although the neurologist I see said very rarely it can come from thyroid disease, which I do have.

I was diagnosed with fibromyalgia last year. I've been quite stubborn on the evc issue myself in the past, waiting until I couldn't walk at all anymore until I got one. I did that for 2 trips. I am going tomorrow and I decided last night that I will not do that again. I'm staying at Boardwalk, so when we get in tomorrow morning, I'm going to go over to Buena Vista scooters and rent one for the week.

Don't wait until you can barely move. I speak from experience

[I Love Pluto]

I also have Peripheral Neuropathy. My balance kept getting worse & worse, then my neck was becoming painful.

I went to a neurosurgeon. The balance issues were not from the neuropathy. I had a compressed spinal cord. I was close to paralysis level. In 4 to 6 months, I would have no use of my limbs.

PLEASE go to a NEUROSURGEON. You sound so much like me. Please.

Bring this post if it makes your visit easier to explain. Thanks!

[Poohbear5]

Originally Posted by clanmcculloch

PLEASE do not forgo a wheelchair out of embarrassment in front of your DD and DSIL. They want you to be able to enjoy yourself with as little pain as possible. I assure you that this is what will be most imporant to them. They can even help out with pushing.

As for the lesions, that actually makes me thing MS or celiac as brain lesions show up in MRIs of patients with both diagnoses and both can cause PN. I'm not familiar with lesions from migraines but there's a lot I don't know about migraines so it could just be that I'm not well enough versed on them. I wish I had a recommendation of a doctor for you but I haven't gone the neurologist route. I have a great GI doctor in southern NH but not a neurologist (my PN is ultimately related to GI issues and if I was going to investigate further I'd seek out a rheumatologist rather than a neurologist because I know it's autoimmune in nature). Actually, I did like DD's neurologist but I didn't get much opportunity to find out how good he is. He referred us to a neuro-psychologist as we were seeing him for possible ASD related issues. I do have a friend that sees this guy though (the friend who recommended him) and she swears by him for her migraines and I think also some PN. If you want I can PM you his info. He's in Derry NH if that's a good location for you since you're in NH and you're willing to commute to Boston.

Yes, would definitely appreciate a recommendation for Derry. Please PM me.
My neurologist in Concord just keeps saying "come back in 6 months", he watches me walk around the 3 foot square room and says "see you in another 6 months". Hubby did not care at all for the doc's demeanor, which did not bother me. Just would like some answers so I can keep moving.

[Poohbear5]

Originally Posted by I Love Pluto

I also have Peripheral Neuropathy. My balance kept getting worse & worse, then my neck was becoming painful.

I went to a neurosurgeon. The balance issues were not from the neuropathy. I had a compressed spinal cord. I was close to paralysis level. In 4 to 6 months, I would have no use of my limbs.

PLEASE go to a NEUROSURGEON. You sound so much like me. Please.

Bring this post if it makes your visit easier to explain. Thanks!

I have already been to a neurosurgeon earlier this year who says it is something metabolic, not nerve compression. I do have degenerative spine disease but he said it's unrelated. I thought sure he was going to be the answer and felt like crying in his office when he said he could not help me..

[I Love Pluto]

Originally Posted by Poohbear5

I have already been to a neurosurgeon earlier this year who says it is something metabolic, not nerve compression. I do have degenerative spine disease but he said it's unrelated. I thought sure he was going to be the answer and felt like crying in his office when he said he could not help me..

I am so sorry that he could not help you. I feel your pain.

Keep smiling. I know it is hard.