wendya432
Active member
- Joined
- Jul 10, 2013
- Messages
- 75
- Reason
- Learn about ALS
- Country
- US
- State
- mi
- City
- Davison
Hi everyone. I just thought I would register and say hello. I've been reading and getting lots of useful information and links and thought I would introduce myself.
First of all, we are not sure exactly what is wrong with me yet, but it some kind of upper motor neuron problem. For about a year and a half or so I've been trying to find out what is going on. I started noticing weakness in my hands a few years ago but put it down to arthritis. I do have some osteo arthritis, but according to rheum nothing that would be causing the issues I'm having with weakness. Once I started getting to where I couldn't put any weight on them doing my yoga I figured it was time to start looking for some answers. I had also noticed some trouble with my legs and just a general fatigue with any kind of exercise or after a busy day.
So now here I am after seeing so many specialists and having so many things ruled out. First neurologist I saw said he thought I had MS, but MRIs came back completely normal except a little bit of wear and tear arthritis in my spine, but nothing that is interfering with my spinal cord or anything like that. After he saw the MRIs he said, no it's not MS, nothing I can do for you. And dismissed me.
My GP got me a referral to the Univeristy of Michigan neurology department. My first appointment there the neuro diagnosed me with cluster headaches, not trigeminal neuralgia which is a facial nerve problem that can happen with MS. I guess cluster headaches are different than migraines and not related to anything else going on. Just a coincidence.
He also looked over my MRIs and had the radiologist look them over and both declared they are fine. I had more labs done, and of course they all came back normal. I have over 30 printed pages of all the labs I've had done. Some pages have just a couple, some have 20 or 30. So I don't know how many things they have tested, but it's been everything from lupus to RA to multiple myeloma and everything else. All vitamin levels are fine, no heavy metals, no signs of anything at all really.
So, with all that being said... I have a clear UMN problem based on my neuro exam. I have babinski reflex in right foot (my leg that is worse) ankle clonus and patellar clonus in both legs, along with hyper reflexes. I have marked weakness. Cannot push against his hands with my thighs at all, very hard to do with my lower legs but I can. I think I also have clonus in my hip on the right side but he didn't test that.
I have weakness in both arms, can't really hold things over my head. Drying my hair is something I've pretty much given up on. It just uses up all my energy. I have clonus in my left arm. Wrist and elbow. (left arm is worse, luckily I am right handed)
I have spasticity, worse in my legs, but also in my arms. Sometimes my left arm will curl up and my wrist bends back. Feels like my arm is going to snap. My right foot will have the pinkie toe just curl up on it's own in a spasm. I have muscle crams/spasms in between my ribs. My trunk muscles are weak and I have a hard time sitting up right.
Lately things have been progressing quicker and many of these things are worse than they were 6 months ago. I feel like sometimes I get used to things how they are just in time for it to get worse if that makes sense.
I also have myoclonic jerks in my legs and arms at night mostly. I take a muscle relaxer (robaxin) but it doesn't really help. I'm hoping to switch it out for baclofen at my next appointment.
Lately I have had a lot of fasciculations in muscles that are already weak. But mostly they are just annoying. No signs of LMN so far, no muscle atrophy. But I have an EMG coming up next week. So we will see what that says.
For a long time we were on the MS line of thought, and that I just wasn't showing lesions, but after my second set of MRIs that is looking more unlikely. We haven't done an LP yet, I think that will come soon, but he wanted to run more labs and the EMG first.
So here I am with something wrong with me, and we don't know what. I have pretty much lost all ability to exercise (and I used to do a lot of aerobics, kickboxing, yoga, rock climbing, you name it). Now a 20 minute mild workout leaves me basically something between solid lead and jello. I also cannot stand the heat. It just drains my energy and makes me weak.
Also have trouble swallowing and slurring occasionally. Some emotional lability, but that hasn't been an issue too much since starting effexor. Very jumpy when startled. Have some issues with numbness not sure if that is related or not.
I'm only 31, which I know is young for PLS and I know PLS is rare, but it is still possible. I have 3 kids, 12, 6, and 4. I'm married and my husband works out of town a lot. Luckily I'm still able to walk (although I mostly walk on the side of my right foot now). But I'm afraid of how I'm going to manage if/when I get much worse.
Anything you can share would be grateful. Or any advice.
-Wendy
First of all, we are not sure exactly what is wrong with me yet, but it some kind of upper motor neuron problem. For about a year and a half or so I've been trying to find out what is going on. I started noticing weakness in my hands a few years ago but put it down to arthritis. I do have some osteo arthritis, but according to rheum nothing that would be causing the issues I'm having with weakness. Once I started getting to where I couldn't put any weight on them doing my yoga I figured it was time to start looking for some answers. I had also noticed some trouble with my legs and just a general fatigue with any kind of exercise or after a busy day.
So now here I am after seeing so many specialists and having so many things ruled out. First neurologist I saw said he thought I had MS, but MRIs came back completely normal except a little bit of wear and tear arthritis in my spine, but nothing that is interfering with my spinal cord or anything like that. After he saw the MRIs he said, no it's not MS, nothing I can do for you. And dismissed me.
My GP got me a referral to the Univeristy of Michigan neurology department. My first appointment there the neuro diagnosed me with cluster headaches, not trigeminal neuralgia which is a facial nerve problem that can happen with MS. I guess cluster headaches are different than migraines and not related to anything else going on. Just a coincidence.
He also looked over my MRIs and had the radiologist look them over and both declared they are fine. I had more labs done, and of course they all came back normal. I have over 30 printed pages of all the labs I've had done. Some pages have just a couple, some have 20 or 30. So I don't know how many things they have tested, but it's been everything from lupus to RA to multiple myeloma and everything else. All vitamin levels are fine, no heavy metals, no signs of anything at all really.
So, with all that being said... I have a clear UMN problem based on my neuro exam. I have babinski reflex in right foot (my leg that is worse) ankle clonus and patellar clonus in both legs, along with hyper reflexes. I have marked weakness. Cannot push against his hands with my thighs at all, very hard to do with my lower legs but I can. I think I also have clonus in my hip on the right side but he didn't test that.
I have weakness in both arms, can't really hold things over my head. Drying my hair is something I've pretty much given up on. It just uses up all my energy. I have clonus in my left arm. Wrist and elbow. (left arm is worse, luckily I am right handed)
I have spasticity, worse in my legs, but also in my arms. Sometimes my left arm will curl up and my wrist bends back. Feels like my arm is going to snap. My right foot will have the pinkie toe just curl up on it's own in a spasm. I have muscle crams/spasms in between my ribs. My trunk muscles are weak and I have a hard time sitting up right.
Lately things have been progressing quicker and many of these things are worse than they were 6 months ago. I feel like sometimes I get used to things how they are just in time for it to get worse if that makes sense.
I also have myoclonic jerks in my legs and arms at night mostly. I take a muscle relaxer (robaxin) but it doesn't really help. I'm hoping to switch it out for baclofen at my next appointment.
Lately I have had a lot of fasciculations in muscles that are already weak. But mostly they are just annoying. No signs of LMN so far, no muscle atrophy. But I have an EMG coming up next week. So we will see what that says.
For a long time we were on the MS line of thought, and that I just wasn't showing lesions, but after my second set of MRIs that is looking more unlikely. We haven't done an LP yet, I think that will come soon, but he wanted to run more labs and the EMG first.
So here I am with something wrong with me, and we don't know what. I have pretty much lost all ability to exercise (and I used to do a lot of aerobics, kickboxing, yoga, rock climbing, you name it). Now a 20 minute mild workout leaves me basically something between solid lead and jello. I also cannot stand the heat. It just drains my energy and makes me weak.
Also have trouble swallowing and slurring occasionally. Some emotional lability, but that hasn't been an issue too much since starting effexor. Very jumpy when startled. Have some issues with numbness not sure if that is related or not.
I'm only 31, which I know is young for PLS and I know PLS is rare, but it is still possible. I have 3 kids, 12, 6, and 4. I'm married and my husband works out of town a lot. Luckily I'm still able to walk (although I mostly walk on the side of my right foot now). But I'm afraid of how I'm going to manage if/when I get much worse.
Anything you can share would be grateful. Or any advice.
-Wendy