In case you were wondering......

[Huskermom1]

Brief history: Husband had severe cramps, seizures, positive babinski, clonus, weakness compared with one side vs the other. EMG showed no signs of LMND but did show thoracic nerve palsy. All other $20K worth of tests NORMAL with our last visit.

Diagonosed with Stiff Person's Syndrome (doctor not confident that's what it is) and some type of seizure disorder. Suggested UMND.

Meds: BP med, Valium (to control cramping and seizures) and Depakote (for seizures)

Presently: No cramping, no seizures. YAY! However, got a call from doc's office, one test DID come back abnormal: Liver enzymes. That would explain a lot. But, and I don't believe our neuro had these results, my hubby's liver function tests were normal back in October when he was at his most severe stage. HMMMM......My husband and I both suspect it is the Depakote causing the elevation in enzymes...Back to the drawing board.

At this point, I'm not too sure if this is where I should be "lurking" but I feel, if anything, the process of diagnosis and signs of UMND is something we have in common. I appreciate any feedback, insight, and support from this group.

My background, I am a nurse (I didn't want to admit it because I feel I get more info by "playing dumb".) I have taken care of people with ALS MANY times. I have seen various stages: physical and emotional. I have been there in life and in death. The people and families of the stricken have been great, supportive, and ready to fight. It has been a positive experience.

What I cannot grasp, in my own situation, is the little Devil of Denial. My husband, even though it is on tape, says he doesn't have seizures and says there is nothing wrong with him. He wants to stop all meds.

As a nurse, I know what "stopping all meds" can do--it can make things WORSE. I'm exhausted trying to "save his life." So, I've resigned as his "nurse" and am trying to be his "wife."

I would love to know how people delt with the denial stage--especially from caregivers. How can you deny what is on tape, what doctor's have witnessed, what your wife has felt (fasiculations in his sleep--like his muscles get no rest), and what your kids have seen?! :-x

 

[Alyoop]

It's a good thing that ALS can at least be lain aside for now. There are many of us UMN syndrome sufferers hanging about here. Many just confused by all the countless tests, increasing disability, but still no definitive answers. It's not an easy place to be for the sufferer or their families. So sorry that you are stuck in this place.
I have epilepsy as well as a UMN proble. I was thinking that with the Valium and Depakote, your husband probably is having a few side effects that he is not happy with. Men are very intolerant of drug side effects. A generalization I know, but in general they don't like feeling, out of touch and as you know Valium and Depakote could cause problems. Maybe you need to see if the combination can be changed? I assume he is not allowed to drive until he is seizure free for a certain amount of time. Here it's 1 year post seizure. You could point out that it's important for him to stick to the meds so he can eventually drive again. I went through 6 months off driving last year when I messed with my meds, so it's not worth it.
The bottom line is that if he really does not want to take them, he will stop. If he has another seizure, he will maybe get the point.
I am stubborn as I hate taking any form of medication, but being grounded and relying on others to get around sucks! I now seldom forget them
Aly

 

[Huskermom1]

Thanks, alyoop. It's nice to know someone has gone through a simliar ordeal and can empathize.

I'm glad, too, that it is not ALS. With every step, we seem to be getting farther away from that diagnosis. I'm keeping my fingers crossed.

One question, with UMN (PLS included) do people tend to advance at their own pace? meaning, could one person progress slowly and another rapidly? The reason why I ask, is because the doctor, when she briefly examined him on his strength, said, "good." But she never performed the babinski or clonus test again. So, I'm hoping, that whatever is going on, will take a while to rear it's ugly head.

 

[Alyoop]

People do progress at vastly different speeds. Doctors do not usually diagnose PLS until it's been around for about 5 years. That is primarily because LMN signs can begin appearing and therefore the person has developed ALS.
There is another local man with pls who is using a pwc and peg tube at 6 years from diagnosis. Others will progress so slowly that they have died of old age before having any significant disability. A lot probably depends on age of onset, of course. Many doctors won't diagnose it at all, and in my case has said that it is a working diagnosis as he can think of nothing else that it could be at this stage. He has warned me that it could be a precursor to ALS. Sweetie that he is .
Hope that helps.
By the way I should have mentioned I have had epilepsy since age 18, and have complex and simple partial seizures, not grand mal.
Aly

 

[Tokahfang]

Firstly, stiffman's is not too different from PLS in living day to day - you should come move in to our PLS forum, there's plenty of room!

Alyoop is completely right about the difference in speeds between people. What she didn't mention, but is also true, is that even in one person the speed isn't constant. I lost most of my trunk strength in three or four months, but went the previous two and a half years with almost no progression at all, just the tiniest bit in my hands. I have had very slow years and lickety split fast years. And I'm no rarity in that - this stuff moves at it's own speed, and it likes to change it's mind a lot!

They key thing is to

 

[Huskermom1]

I'll meander to the PLS forum.....