UMN symptoms in legs

[Suzannah]

Hi,

Thanks for all the replies.

In answer to a couple of questions, I have not been tested for Lyme or MG, but that's on my list of things to ask about.

And yes, I am a "Texas Uni" student (though I didn't realize that's what I was selecting at the time ... it was late and I thought that was an odd country abbreviation for US since it came after "state". Oops). I'm a part time third year PhD student by day, full time small business owner by night.

My appointment is tomorrow morning - will post an update after it's done.

Thanks again,
--Suzannah

 

[Mediasmart]

Hi all,
about the "weird eye things", I looked back at the report and it said:

Anisocoria (unequal pupil size)
Afferent pupil defect (pupils don't constrict similarly when exposed to light)
Vertical gaze palsy (can't track eyes upwards)
--Suzannah

Sounds like Horner's and a 3rd never issue...not als related.

 

[Suzannah]

I just got back from my appointment. It went really well. I liked this doctor a lot - she took her time and really listened to me, which was great.

She picked up the same issues as the other doctor and also found that I had weakness in both hands. She said that there is very definitely something going on with some type of upper motor neuron issue. She thought it might be either hereditary spastic paraplegia or PLS, though she thought HSP was more likely due to some sensory issues.

She did not think I have ALS because I did not have any atrophy in my hands to accompany the weakness. (I didn't think I did, either). She still wants to do an EMG just to make sure, and that is scheduled for a few weeks from now.

In the meantime, we are checking with my insurance company to see if they will cover genetic testing for HSP. I'm pretty sure they do.

At the end of the visit, I asked her directly asked her if there was possibility that anxiety could be causing these problems and she said, "Not a chance. You aren't making this up." She said whatever I have is "unusual" but that she felt that we would be able to figure it out. And she said if she couldn't, she'd refer me out.

She gave me some Baclofen to help ease the spasticity, which I am hoping will let me finally get some decent sleep!

So no real answers yet, but I feel like I'm moving in the right direction.

Thanks for reading,
--Suzannah

 

[Tokahfang]

I'm glad you got a good doc.

Since my parents didn't show any signs of HSP, I was able to have just the recessive HSP genes tested. That took 10,000 off the bill and sweetened the pill for my insurance.

 

[Suzannah]

@Tokahfang - egads. I knew it was expensive but didn't realize it was that much. You've been diagnosed with that ... right? If so, what were the symptoms that you had that tipped your doctor in that direction to lead to the testing?

And thanks for your earlier post suggesting that as a consideration. HSP and PLS were the two main things I was concerned about. When the doctor was explaining them, she suddenly stopped in the middle of what she was saying and said, "I'm throwing a lot of medical terms and info at you, but I sense you already know all this." She laughed when I told her those were the two things I had come up with.

--Suzannah

 

[dalvin]

Suzannah, important to realize that there are some temporary side affects to the baclofen. I had severe nausea for bouT two weeks, after that it passed. Thought I should warn you of the possibility, but don't give up on the baclofen, it does help

 

[Dusty7]

EMG can pick up LMN signs before they show up on clinical exam, so it's great your neuro wants to do it. Hopefully that will kick ALS off ther table.
Good luck!

 

[Clearwater AL]

Suzannah, as Dalvin wrote, "don't give up on the Baclofen" if you have any temporary side effects. I take 60MGs a day. It's the FIRST thing I do when I wake up in the morning. Just a reminder... once you start taking Baclofen regularly you can not stop taking it abruptly. Hope it helps you.

(Geeze... another of my not so brilliant moments. I'm sure you'll read the med sheet with your first prescription.)

 

[Tokahfang]

Yeah, there only one place that does the gene test and it is $16,000ish for the full and $5,000ish for the recessives only test.

My situation got complicated - my symptoms were only noticed due to a car accident. I had clinical weakness that they couldn't exercise away, but they figured I just hadn't been covered for enough PT. I showed back up in a wheelchair almost completely unable to walk years later. It was a spastic gait and distal sensory dulling that made them go that way for me. I had the gene test the next year for confirmation and it came up SPG7. That has been helpful for knowing what kind of complications to expect.

HSP isn't a pure upper motor neuron disease - many forms of it are "complicated" and do some damage outside that tract of the spine. Knowing which kind you have (if you have one of the 40 we have nailed down) will help with knowing what to be ready for.

 

[Suzannah]

Thanks for the head's up about the Baclofen. The doc gave me a very small dose to start with and suggested just taking it at night for now, which is when it is the worst. And yes, I did happen to read the med sheet, and a lot of the internet . What can I say ... I'm nothing if not thorough ... (*rolls eyes*) I just took my first dose, so we'll see how it goes.

Weird day today. I haven't discussed this yet with anybody in real life yet, other than briefly with the doctor this morning. I haven't mentioned any of this to my family yet (single, no kids, rest of family not in my city) since I really didn't think anything was going to show up. I figured there was no reason to make them worry for the past month if nothing turned out to be wrong. I feel like I should wait for two more weeks till after I have the EMG to say anything. Should I? I don't know.

 

[Nikki J]

Suzannah I hope your EMG is ok but sorry that you have the provisional diagnosis. Of course who you tell when is a personal decision and depends on your needs and the family dynamics. The question of a genetic component possibly being involved complicates things. If you have siblings and nieces and nephews even a recessive gene would trigger some concern ( or panic for some personalities) if you need support from family tell them if they are going to be more stress don't!
Re genetic testing make REALLY sure your insurance authorizes it in advance. Get names if you can not get it in writing! If you have a network it will almost certainly be out of network so make sure you get the appropriate authorization. I am guessing it will done at Athena. That is where ALS genes are tested. If heaven forbid your insurance won't authorize Athena gives a discount (10 percent?) if you pay up front. That is what I did but I only had one gene to test and ours is "cheap "( under a thousand)!

 

[gu1928]

Hi Suzannah ..how are things pogressing with your diagnosis?

 

[Suzannah]

Hi, thanks for asking. Not much new to report - still in a holding pattern for a few more days. I'm waiting on results to come back for a test for Wilson's disease, and I have the EMG appointment scheduled for this upcoming Monday.

It's been an interesting two weeks since I started taking the Baclofen for the spasticity. After just two small baby doses at night, all of the spasticity disappeared and I was completely pain free for the first time in 20 years. It was startling, and amazing. During that time, I discovered that my inability to flex my feet was due solely to the spasticity and not due to weakness. So I'm hoping that that helps point away from ALS. Thanks to those who mentioned nausea with the Baclofen. I did have a lot the first week but now it is getting better.

I tried not to get too attached to my body feeling so good and loose because I figured it probably wasn't permanent - and it wasn't. Everything's starting to tighten up again, and I can't flex my feet again. It's a little like being covered in wet concrete, a few inches at a time.

So, for now, no news is ... no news. I will be glad to get the EMG over with in a few days.

--Suzannah

 

[Tokahfang]

It takes a while to work up to a good, functional antispastic dose (Baclofen or Tizanidine or a combination of them). At first your body is overwhelmed, then it gets used to that dose and it takes more. Eventually your docs finds a happy place where the antispastic does something for you without making you too weak. If you can get a really stable number, it is often worth getting a pump installed at that point.

 

[Caliburn]

i have horizontal nastygmus in both eyes. Makes me so dizzy sometimes i cant stand. lol. But they dont really know what i have.