Should I be concerned?

Husband is in testing phase. Doc appt tomorrow to follow up on the 43 blood tests ordered and for the thoracic MRI (which was the last part of the spine to be done since all this started.)

I know the MRI is clean except for encroachment on C6-C7 to which he is being treated. EMG from the past shows nothing. (but he wasn't displaying UMN symptoms at that time, either--he is now)

FYI: He suffered two Grand Mal seizures last week with each one resulting in status epilepticus (more than two in row) It resulted in a change in his medicine and he has been "stable" ever since.

Now my concern: My husband suffered from bronchitis for the first time in his life this past Jan/Feb. He is a smoker and not overweight. Since that time, I feel he hasn't fully recovered. His breathing becomes labored and loud at simple tasks. For example, last night, he walked to the bathroom and back to bed. He was breathing loud, fast, and was attempting to take deep breaths. He, then, coughed a wet cough, and started to slow his breathing down. I have caught him at various times trying to take deep breaths in and he blames it on smoking.

Another concern: Ever since one of his seizure episodes last week, his speech appears to be slurred more than ever. Numerous times on the phone, I have had to ask if he had been drinking and say, "What did you say?" because I couldn't understand him. He blames this on a speech impediment since childhood and because his dad had speech problems. In fact, he's sounding more like his dad. To me, his speech has changed but he denies the difficulty of saying things--but I HEAR it!

I've read that seizures and ALS don't really go hand in hand, so I am assuming that two different things are going on with my husband. However, I have read that seizures can ignite from the same centers of the brain as UMND can. So is it possible that they can be related?

Another question: Is this how ALS affects speaking and breathing or should is it more the mechanics of swallowing?

Hello Huskermom

I just read your original thread and let me start by saying I'm very sorry you and your husband are having to go through this.

His symptoms can be due to a multitude of conditions that affect upper motor neurons. I know you said that he was given a tentative diagnosis of stiff man syndrome. Have they tested for it (the test would be a blood test used to detect autoantibodies specific for the syndrome)? Just so you know, it is manageable with certain drugs. Another question: Do his symptoms get worse after he has a seizure and do his symptoms gradually get better? Have his symptoms gotten any better since being put on his anti-seizure meds?

As far as your question about ALS and seizures: I am not aware of any type of correlation. Seizures can occur in any area of the brain, so they are not relegated to any one specific area. The area of the brain where they are occuring will most often be evident by the symptoms manifested. I also recall that your husband's EMG did not point in the direction of ALS, meaning it did not show any type of lower motor neuron dysfunction, so as of right now, your husband does not have ALS. He could have PLS, which is a disease that affects upper motor neurons (upper motor neuron dysfunction cannot be detected with an EMG) but his upper motor neuron problems (as I stated earlier) could be caused by many other conditions.

Your last question: For ALS to start in the bulbar region (evident by speaking and swallowing problems) and the thoracic region (evident by breathing problems and trunk weakness) would be incredibly rare and almost unheard of. I would have to say that his breathing problems are most assuredly being caused by bronchitis. Was he diagnosed with acute or chronic bronchitis? You said he is a smoker and the leading cause of chronic bronchitis (a type of COPD, along with emphysema) is smoking. How old is he and how long has he been smoking?

My other fear is that he may have suffered a stroke during the Grand Mal. Because all the speech changes came after those episodes. Hopefully, I will know more tomorrow.

Yes, he had the GAD test, but the first neuro still suspected SPS and sent us to a specialist who said that she doesn't feel like it is.

The little voice in my head says that the difficulty breathing could still be related to the bronchitis. It was an acute episode, he took antibiotics, and is slowly recovering--coughing has returned to his "morning guck" but the SOB has stayed. He's been a smoker for a little over 20 years--about half his life (1.5 ppd)

There seems to be a relation between his seizures and cramping: His cramping, that started in his feet, calves, hands, and, now, have progressed to his shoulder and chest, seem to pop up around the time seizures do. He went without a seizure and cramping for a full month, then, he had a seizure. The next day, he started cramping again.

This last episode of seizures (this past week), he did his "bobble walk" to the car, we got home, he seized, came out of it, and then the left side of his chest and shoulder cramped. He mouthed the words, "I can't breathe, I can't breathe" I comforted him and told him that it will stop...try to relax.

Well, a couple days later, when he had his grand mal, his whole body was cramped, but that's due to the seizure. No cramping in his body since.

He got an infusion of dopamine this past week, so I'm hoping the seizures will come under control.

I try to keep these posts short so I may accidentally leave stuff out. Feel free to ask more questions. Just "talking" about it to someone helps because I'm sure the people at work have heard enough .

How long is he seizing? Do you have any medications to give him to stop it while its happening? ( i believe it would have to be in shot form) Its usually only given after someone has been seizing for over 4-5 minutes.
Does he only have speech issues after the seizures, and then it improves? I didnt understand your response to Wright's question. I obviously am not a dr. but ive seen hundreds of seizures and I could see why cramps would go with them on occasion. Please someone correct me if i am wrong on this.
this "bobble walk"- does he do this all the time or only before he seizes and then it goes away?

I have observed two types of seizures: grand mal and complex partial. He seizes one after the other and never fully recovers from his post-ictal stage. This will go on for over an hour. His grand mal (tonic-clonic) lasted for about 45 seconds total, but occured one after the other--at least three times in a row, maybe four. By the time he feels his aura, he takes an oral valium and I wait...and wait....and wait.....

I do have emergency valium to be administered in his rectum. I did ask for a shot, but she said that it's not available as a presciption. So, if he has a status epilepticus episode again, I will give it to him.

His speech has not returned to normal.

His "bobble walk" isn't associated with the seizures. It just reared it's ugly head when we were at the restaurant, he felt weird, and we hurried to the car before he seized. He bobbled all the way out.

The only way I can describe the bobble walk is this: If you have ever lifted weights, you know that your muscles reach a point of exhaustion. If you attempt to lift the weight again, your arms will shake as you are lifting. Well, imagine that on your entire body.

The first time he did this, it was during his severe cramping episodes that lasted for about a month. So, I just chalked it up as his muscles reaching the point of exhaustion. I caught it on tape, showed the doc, and she thought it was weird.

I will say this, and I just learned of this last night, my adorable, loving husband (and I say that with tained breath) has been experiencing small, cramp like feelings in his chest since last week. He demonstrated by squeezing my arm and letting go. He said it would go away if he was to stretch it out.

As of last night, he informed me that he is going to refuse the lumbar puncture if it is offered (all his blood tests must come back normal if the doc is to perform one). He says he does not have seizures. He said a life-style change is all he needs. Exercise, eat right, cut down on drinking.......Then he will be cured.

Any advice, now?

Edit: I just removed part of what I wrote earlier. What I was trying to say, is members here for the most part would not have experience with the most troubling symptoms your husband is having, i.e. the seizures.

The speech problems you describe are seen with people with bulbar ALS, however, when people with bulbar ALS present with the speech problems, (and they don't know they are sick with anything) the first thought, after that they sound drunk, is that maybe there has been a stroke. BUT there has been no stroke, or seizure, and they're not drunk etc. The speech problems are due to weakness, not brain impairment. We did have one member with bulbar ALS who awoke from heart surgery slurring her words, and at first it was thought she suffered a stroke. But, later it was thought that the stress of the situation just made what was already in progress more apparent. I went back and read your first post where you talked about him having positive babinski, etc. so, the speech could be umn related, but it still makes more sense that it was caused by an "event". ALS does not come on so suddenly, and of course the seizures are not a feature of ALS either.

About the lumbar puncture, its really truly not that bad, I've had one. Its a small price to pay for him to get a full picture of what is happening to his health. It has got to be a giant frustration for you to have him react like this. If the two of you have children, (and I'm assuming from your name that you do) you might work on that angle, in needing to find out what is wrong with daddy for the kid's sakes. Someone needs to get him to see the seriousness of not pursuing the cause. Its not like the doctors are recommending some unproven risky procedure. Spinal taps have been done for many years, and they give information that is not seen by other types of tests.

Its good to see that you live in an area that has some great medical diagnostic centers. Good luck to you both, I hope you're able to get some good answers soon, and things settle down for your husband. Please let us know what you find out.

UGH! The office cancelled! All the bloodwork is not complete.....oh well, to be continued.............................