I'm afraid for someone high risk

[laurajh]

I'm really scared. Not for me, but for my 79 year old father-in-law, who has had problems with the same leg on and off for years. He's had both circulatory problems as well as nerve pain. 5 years ago was my last time of intense worry, when he was having pain in the leg. They never did figure out what the problem was but after seeing a chiropractor the problem stopped for a while. I think it was sciatica. I was relieved for him for the time being.

Fast forward to now. About 6 or so months ago he started complaining about numbness in the same leg. Total numbness, he says he can't feel anything, it's just "dead". A fall landed him in the emergency room and he has to use a walker now. He hasn't mentioned anything about weakness or twitches, so I don't know whether or not he's experiencing those (he lives out of state, we only know what he tells us over the phone).

He has gone through all the testing, MRI, EMG, etc., and will have the results of those next Tuesday. I am really scared, not just for him but also for the future of my husband. I'm hoping my mind might be put a little more at ease if someone could tell me what the likelihood it might of being ALS when there is sensory loss? Everything I've read says that typically there aren't sensory symptoms, but I also know they're not unheard of either. They also mentioned something about seeing swelling in the ankle.

Normally ALS wouldn't be the first fear that comes to mind, but in his family there is a known FALS connection, beginning with his father. 2 of his sisters have been diagnosed and died (the oldest being 71 or 72), and we know a 3rd sister (74), although currently symptom free - is a carrier because 2 of her sons (in their 40's) have it.

He's recently gone through all the tests, MRI, EMG etc., but they're waiting until 9:30 Tuesday morning to let him know the results of everything. Does that mean they probably think he has it but just want to compare all the other tests before saying so? I thought a doctor could tell the results from an EMG right away, it's not like there are films to develop or anything.

 

[BethU]

Laurajh ... I'm so sorry your father-in-law is having these problems, and that there is so much ALS in the family. It must be extremely stressful for you and your husband.

You asked: Does that mean they probably think he has it but just want to compare all the other tests before saying so? I thought a doctor could tell the results from an EMG right away, it's not like there are films to develop or anything.

I think it is common practice for doctors to make appointments to discuss test results with patients in person. It would be unlikely for a neurologist to telephone the results test by test to the patient.

The EMG does not diagnose ALS: other diseases, such as Myasthenia Gravis, can produce results identical to ALS on an EMG, so doctors have to go by other tests, clinical exams, a patient's history and the progression of symptoms, plus the EMG, to make an evaluation. There are specific criteria that have to be met before a diagnosis of ALS is made.

I hope your father-in-law is spared.

 

[crystalkk]

Laura,

I do understand your fears with the FALS history, but the total numbness in the leg would typically point away from ALS.

 

[laurajh]

He was actually told by one neurologist back in February that it wasn't als. I don't know what testing he did or didn't have back at that time, but my husband was in the doctor's office with him when the neuro said "it's not als" (I never knew that until this morning). That was 3 months ago. He wasn't getting anywhere with that neuro so he's seeing a different one now. They were talking about the possibility of surgery at one point and then decided against it because of his age. This morning when we spoke with him over the phone he said he had a feeling he has it ("it" meaning the disease). I don't know what happened between then and now that makes him think that, but it really bothers me to hear him say that, since he's been so upbeat and "nah, that ain't what it is" about it. I hope he's just feeling frustrated and it's not that somebody said something to him that he's not telling us.

When I say they mentioned surgery, I should mention that decades ago he had similar symptoms (he says) and had a spinal surgery that fixed it. I guess they were thinking this could be the same recurring problem, and I hope that's all it is. Radiation or cancer isn't good of course, but anything is better than you know what. My husband thinks it has something to do with radiation he was exposed to from bomb testing in Korea.

 

[wright]

Laura

Given the history of your father-in-law and the consistency of his symptoms, I would have to say that it is highly, highly likely that his problems stem from his disc issues. I'm sure as he continues to get evaluated by his physicians, they will determine what is wrong and hopefully be able to treat him.

It is true that a small percentage of PALS suffer from sensory issues. There have been studies documenting this but in every study I have read (and I believe I have read them all), it is very focal in nature, especially in the beginning stages of the disease. It would not present in an entire leg as you have described. That is more a symptom of disc issues.

It's my guess that his new attitude is probably the result of frustration and depression. One other thing: 79 is on the high end of getting ALS. It certainly can happen at such an advanced age, but the odds are with him.

 

[laurajh]

I can't even say for sure if it did present with his whole leg, or even if it is the whole leg at this point. Even my husband has only been able to get vague information out of his own father, and I don't want to keep pressing for information and stressing anyone out even more. He's never even said whether or not his past problems were due to a disc problem.

That's what I've read too, that it would typically present in younger decades, but then when I think that one sister was 70 when diagnosed, and then the other sister who's a carrier is 74 and still healthy (knock wood).....they were/are pretty up there too. Although her sons are both in their 40's when it presented.

I so hope you are right. I appreciate everyone's taking the time to talk with me about it.

 

[blackskinny]

I thought a doctor could tell the results from an EMG right away, it's not like there are films to develop or anything.

 

[laurajh]

Well the good news is he doesn't have als, Bad news is he has some form of diabetic neuropathy, and the WEIRD news is that he's never been a diabetic. Apparently now he has a mild case and will have to take medication for it, but my mother has been diabetic for years and I had always thought that neuropathy wouldn't occur until after long term diabetes more serious in nature.

So the neuro is putting him on medication for that and sending him to physical therapy and says his symptoms should clear up within 30 days. So I guess we'll just wait and see but I'm still left scratching my head, just not so much panicked anymore.