AnonymousJanuary 27, 2010 at 4:42 pm
The sensory in my right foot has been getting worse. My driving had been getting scary… can’t feel the brake. My foot even slipped off it sometimes. I just about 2 weeks ago got hand controls installed on my car. They are a Godsend as I was close to losing my ability to drive. I now am in complete control of the car and confident behind the wheel. If anyone wants to know what’s all involved, I can tell them. I would heartily recommend them to anyone who like myself is in good enough shape to drive but is losing sensory.
I have noticed that my eyes have become increasingly sensitive to light over the years. I’m 50 by the way. On long trips, my eyes were getting to feel like they have sand in them. And this feeling persists the rest of the day after a couple of hours of driving. Lately, my eyes have become increasingly sensitive as even on short trips the light bothers me some. On long trips I’ve been putting these giant goggle sunglasses over my regular prescription glasses and they help. I’m wondering if other people are experiencing this? Is it optic neuropathy? Can anything be done about it?
Also, a question here for the men… I’ve been experiencing a diminished sexual response over the years. I believe it’s from the CIDP. Used to take 50mg. of Viagra sometimes. Now, I’ve been taking 100 mg. Do you think this is related? Do any of the men here have any suggestions?
AnonymousJanuary 27, 2010 at 5:50 pm
Hand controlls are wonderful. I beleive that everyone who has no reflexes in their legs and can’t feel them should have them. Otherwise you pose a danger to yourself or someone else.
My son Ryan is getting them as soon as he finds a vehicle. He has to have a certain kind of truck because he needs a turny seat and a wheelchair lift put in the bed of the truck. He can’t wait. It will give him back some of his independence.
I am happy for you that you can now drive safely.
AnonymousJanuary 27, 2010 at 6:31 pm
About 3 years ago, I lost ALL feeling in the groin area.
My doctor gave me some Viagra to see if it would help–it didn’t.
I have no feeling, so I have no way to get a “hard-on”. (I don’t know if
this site will block that out, so I will do it this way–
I have no feeling, so I have no way to get a “h-a-r-d-o-n”.
If you can’t get it stiff, forget it.
However, once in a blue moon, I will at least try to satisfy my partner.
I’ve given up on myself, but at least you can still please your loved one–they shouldn’t be left out of sex, just because you “can’t get it up”.
You can still “play”, and at least show you love the one you’re with.
I personally got an indwelling catheter now about 2 years ago, so,
I definitely had to put that out of my mind, though, like I said–you can still “play”, and at least satisfy your partner.
If your partner is a female, get a dildo, (I don’t mean to be vulgar–I am just telling it like it is), and you can have all kinds of fun with her–drive her to an ultimate climax. Oral sex can still be fun, though you can’t “get off”, she still can. Sometimes, even bring in whipped cream for some added fun.
You have to keep the relationship going, even though you “don’t work right”.
AnonymousJanuary 28, 2010 at 1:17 am
I will skip the “sex” part of your question, partly because I am a woman, partly because Ken covered all bases on that one… I have had trouble with my eyes, lots of problems since I came down with CIDP almost 8 years ago. I developed cataracts from the 1,000 mg of solumedrol I was infused with for 21 months. I had successful surgeries in both eyes (could then see 20/20 for distance, but my eyes get blurrier as the day goes on & tire easily. It’s extremely frustrating because I love to read, & by evening that is next to impossible. They are also very sensitive to outdoor light, but again that could be due to the cataract surgeries.
January 28, 2010 at 12:28 pm
Driving was scary for awhile … I commute 60+ miles one way every day and work in the 4th largest city so traffic can be horrible. Fortunately I’ve recovered to the point that driving is now unaffected.
When losing motor control and sensory, I was concerned about, but never experienced ED problems. So I can’t help you there.
As far as eye sight, I had some problems with focusing before I was correctly diagnosed and began PE therapy. It was predominantly in the right eye, but after I began PE the focusing issue has gone away. I also experienced a bright light in the upper right corner of my vision that “looked like” a tomato slicer or sea shell (kind of corrigated). It was in my vision when I awoke in the morning and first opend my eyes and also when I would close them tightly and reopen them quickly. This bright light progressed to the left eye as well, but disappeared after I began recovering after the PE therapy. It returned when I was put on cellcept and all of my symptoms began returning. Weird huh? I know from the onset and reappearance that it is associated with CIDP. This bright light is still in my vision when I awaken in the mornings and I hope it will again go away completely since I’m no longer on cellcept. If not, c’est la vie! 😮
The reason I pass this along is to confirm that CIDP can in fact affect our vision.
AnonymousJanuary 28, 2010 at 5:44 pm
Thanx folks for your replies. I’m glad that we can talk about the sexual aspects of CIDP on an open, adult level. Of course, I totally want to please my partner with oral, toys, etc. I’m more interested in the love and closeness myself. I’m at the point where sex is possible with much patience and consideration from my partner. It seems to be gradually getting worse as the rest of my condition gradually goes downhill. Was hoping someone would have suggestions here.
The sand-in-eyes feeling is getting worse too while driving. Going to see neuro the second week of Feb. She seems content to let things slowly deteriorate. I’m going to push her for cyotoxan or revimmune. I want to stop and/or reverse this thing before my quality of life is in the toilet.
AnonymousJanuary 28, 2010 at 7:10 pm
I certainly don’t mean to dismiss anyone’s experiences, so please don’t take this that way, but I have to ask…couldn’t your eye and libido concerns simply be effects of aging, and not necessarily related to your CIDP?
I mean, many a comedian has made a joke about male sexual prime being around 18, and women’s being 35-40…about the time men discover they have a “favorite chair”? At 50, I’d bet a LOT of men have periodic ED problems, as well as a lack of desire.
As to the eyes, that seems like it could easily be related or not. Eye dryness, which sounds like what you’re describing as a sandy feeling, is very common in middle age and later. My wife is 50, with no other problems, and has horrible problems with night glare.
The reason I say this all is I’ve suffered with other chronic issues, and know there are some times when things are just “life”. My wife is a teacher, and she sees this a lot with learning disabled kids. The parents want to blame the learning disability for everything, even when the child is just being a normal, lazy teenager.
Again, I hope that’s not too harsh. Maybe it IS all related, who knows?
AnonymousJanuary 28, 2010 at 9:33 pm
Changed my mind after reading Elmo’s post, maybe I will throw in my 2 cents on sex. I think he brought up some very valid points about aging. I have numerous girlfriends in my age group (I am now 56) who virtually gave up sex after they had their children, just lost interest. I was nearly 49when I came down with CIDP, working full-time, cleaning a 4 story home, raising 3 high school & college age children, etc. In other words, sex was not the number one priority in my life. Cuddling, hugging, or any kind of closeness became much more important.
I was hit hard & hit fast with CIDP & for 3 years sex was not even a consideration, I was that sick. In the meantime, my husband has had 2 back surgeries & his back “goes out” a lot, like right now. That is not important to us, we find so many ways to keep our love alive. I think the movies lead us into false ideas on sex, in the violent ways it is portrayed. I think many men in their 50s do suffer from ED; if the act is that important in a marriage, then Viagra is probably not a bad idea. Most importantly, each partner needs to speak up on this particular subject.
BTW my son has used hand controls since he was 16 & we live in northern MN, lots of snow, ice & -30 temps. They are awesome, he couldn’t work full-time without them. I have just enough left in my feet not to need them, but would not hesitate if I did.
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