Hi, I'm Chip

[JustChipper]

Hi Guys (and Gals):

I started lurking here about 4 months ago and have read hundreds of posts. I will put it out there that I have seen two GPs and both have said I have a neurological disorder. My HMO is slower than I am, and I did intense blood work this week. Still, I wish to insult nobody here, as I do not have an official diagnoses, except for that I have a neurological disorder.

I realize I am undiagnosed, and I'm not here to "fish." I simply wanted to connect.

If you are still interested, I would like a place where I can talk. I feel like I cannot talk to many people, if any. Regardless of how it goes, I have found levity here, sadness, frustration, and reality. All of those things are important to me.

Here's my (boring, most likely) story:

In Feb 2013, I woke up 4 times in the middle of the night to pee (sorry for being vulgar). 3 specialists later and it's decided my nervous system is producing too much urine; dehydrating me. The same day, I noticed my feet were so sore, that I could barely walk.

Having my HMO, things work slow. In the last month, I cannot shave my head; I get too weak. I can't hold my cell to play WWF for very long, and working out is not an option anymore.

I trip over nearly everything. Into my car, out of my car. Over carpet, sidewalks, you name it. I'm 38 years old, and male.

My reflex test have been awful 4+. My dexterity is very poor. My office requires a key for every door; and just finding the keyhole is difficult. Stairs are intolerable, though a month ago they seemed ok.

I feel okay, until I get into my car and I fall in. Or I feel okay until I walk to my office and fall over a "bump" in the carpet.

I am (or was) about to ask my gf of 9 months to marry me, but I'm nervous about putting her through anything difficult. I feel alone. I said it. I feel like since she is 10 years younger, that I don't want to subject her to anything other than a good version of myself.

I have an appointment with the neuro in one month. However, both GPs have told me that my reflexes are askew, that my dexterity is poor, and my feet shake when tested. My blood work comes back next week.

Anyway, of course timing is never good, I'm leaving a great job (a non-profit that allows me flex time). I'm going to a firm where I have no idea what to expect, will be without insurance for 3 months, yet it's the dream job for me. Not the dream time, however. I'm scared.

So enough about me. I wanted to introduce myself. I wanted to "talk." I hope that is OK. My GP encouraged me to study the neurological diseases in order to "prepare." I suppose that's what I'm doing. In reality, I guess I just want to connect.

Thanks for listening.

Chip

 

[JustTrying]

I'm also in limbo and I totally understand wanting to talk to people who get it. It's very hard for my family to understand what I am going through but my husband does see my weakness. I have an upcoming appt at an ALS clinic. I hope your appt goes well and you get answers.

 

[Ms. Pie]

Why do you trip? Do your ankles roll? Do you have any weakness anywhere? The symptoms you mention don't sound like ALS.

 

[JustChipper]

I'm also in limbo and I totally understand wanting to talk to people who get it. It's very hard for my family to understand what I am going through but my husband does see my weakness. I have an upcoming appt at an ALS clinic. I hope your appt goes well and you get answers.

I hope your appointment goes well, too. I'll keep you posted - please do the same. Thank you for welcoming me.

 

[JustChipper]

Why do you trip? Do your ankles roll? Do you have any weakness anywhere? The symptoms you mention don't sound like ALS.

Hi Ms. Pie and nice to meet you. I don't know why I trip. It's very hard to explain, because I can't make sense of it myself.

It's as if I all of a sudden have no sense of what it's like to do walk or clear heights. I imagine it's like I accidentally put on high heels (let's pretend like I've never worn heels), and I go about my day. I fall into my car, tripping over the part where feet would normally clear. My foot gets caught on the way out too. Sidewalk cracks, bunched up carpet, things like that where I take for granted that my brain is automatically adapting to the things around me, but it doesn't seem like it is.

My ankle seems okay. I read the sticky about weakness. I'm not sure what to make of it at this point. To me, since my right leg has decided to not clear hurdles that it has done routinely, I feel like it's weakened. Perhaps this is perceived, but it is so sudden and so odd to me. I can't remember ever tripping, especially getting in and out of my car.

 

[skikaz]

Is it only one leg or both causing the tripping? Have you seen signs of one or both feet dropping? Mine started with right foot that developed into drop foot. It got to the point where the right foot could not be raised enough to clear anything. Get a weekly planner and put down changes of symptoms, medicine prescriptions and Dr appointments.

 

[jodierrn]

Hi Chip,

Welcome to the forum, I hope you are able to see a neurologist at UCI, or UCLA. I see a MD at UCI and could not be happier with the care. It seems you have many deficits which need to be investigated. If you are diagnosed with ALS , know that a supportive community is within your reach. The OC ALS association has been very helpful. Lets hope we don't meet.....hence it's not ALS. Thoughts are with you, waiting is terrible.