My Husband

[Lkaibel]

My husband has drop foot in his left foot. It is not even actually "floppy", but most re that it will only raise a tiny bit. He has had an EMG that per the Dr was "three times longer" than anticipated. Now he is moving on to a 2.5 hour MRI, brain and back and limbs.

The positive things here are that he fell on some steps and hit his knee in February so I hold out hopes that it is nerve damage from that injury. I was also relieved to hear recently that he has numbness, as I know numbness is not indicative of ALS. I am concerned he has has nighttime leg cramps the past year, that his tests are so extensive, and he was moved from a "regular" neuro to one who specializes in neuromuscular conditions. I don't belong Eve they think this is from the fall anymore. He is 66, and I am doing all I can to keep it 100% positive and encouraging with him. I am 51 in July and he keeps making "young widow" jokes. Eases the tension I suppose.

Under the circumstances I know my ALS concerns are silly, but find them difficult to shake. A friend was very unexpectedly Dx'd two years ago so I am sure that has gotten my anxiety up.

I just wanted to say I have so much respect for everyone dealing with this disease.

 

[KimT]

What did the EMG show? That should tell you a lot. It doesn't matter how long it took. The results are what matters.

 

[Lkaibel]

I wish we knew. The results of that and the MRI will be next Tuesday. It has not been discussed at all yet. They just wanted to do this big MRI after the EMG.

 

[Lkaibel]

The thing I am really thinking about today is we have nothing to think about yet. The big follow up MRI could mean so many things. Since the EMG results are apparently only going to be disclosed next week, and all this MRI stuff is pending we know really nothing. No one has as of yet suggested ALS or anything else dire. For the first time, I am feeling the kind of health anxiety for my husband I have in the past felt for myself ( though I have never worried I had ALS). What truly has not helped was to be having him going through EMG and now MRI just like my TWO unfortunate friends Dx'd with ALS in the past two years. The odds of knowing two people with this condition per my Dr are " extremely small", but that's what happened. Prior to their diagnoses I was only dimly aware of Lou Gerig's disease as we use to call it.
SO I am going to leave all of you with hopes of having no call to return - at least for my husband's situation. The PALs in my life though might be interested in this forum- or their partners at least. My heart goes out to all of the PALs and their loved ones. I think of ALS as the cruelest of conditions but I am sure impressed by how so many have coped with it.

 

[Lkaibel]

Told Husband May Have ALS

The is all started with a drop foot my husband got after a knee injury. Simple, right? Wrong. While an EMG did show near entrapment possible causing the drop foot, it also detected nerve issues in other parts of the body. MRI of back/ head/ legs showed some back issues but not enough to cause nerve issues shown on EMG.

This morning we went to a consult on the results of both EMG and MRI. Dr also did yet another physical neurological exam. He claims he found weakness in both ankles on the exam, not just the left side with the drop foot.

The Doctor stated this is either an inflammatory nerve issue/myopathy or ALS, basically. He heals out a tiny hope that it might be something benign. The odd thing is husband has some numbness and tingling and does not have spastic reflexes. Doctor said those things did point away from ALS. Aside from the dropfoot after the knee injury other symptoms have been leg cramps on exertion for about a year and some facilations all over the body. I got the impression though that the Doctor thinks ALS.

A spinal tap and blood work are scheduled for this Thursday. He said only about a 50% chance they would be conclusive. It is more likely we will need to wait 3-6 months and do another EMG.

I am really trying to stay positive for him and keep my head but man it's not easy.

 

[Atsugi]

Can you tell us the results of the EMG?

 

[Lkaibel]

The exact results no. Abnormal activity in the back muscle, something on the hand an for arm and right leg (the one with the drop foot). No muscle atrophy or hyperactive reflexes.

 

[Lkaibel]

Oh and after the spinal and blood work we will grab that second opinion for sure.

 

[Lkaibel]

So after the spinal and blood work, we are being asked to wait two weeks for another consult? I am not expecting to hear anything positive at that consult or probably much of anything at all except come back in three months and have another MRI - we don't have a definitive Dx. I just think the wait times for neurology appointments and particularly results is crazy. Communication seems poor and little is thought it seems of dropping bad news. I don't catch much compassion. Anyone that's my gripe.

Maybe a time will come when I am grateful for the time We had not knowing for sure. The words that tumbled from the Dr's mouth yesterday still feel surreal. Whatever my fears were, somehow I did not expect him to talk ALS as the second possibility after autoimmune nerve disorders.

 

[Lkaibel]

A thought occurs to me about EMG. It is obviously a pretty shaky diagnostic tool at least some of the time. We were told my husband had either an autoimmune condition effecting his nerves OR ALS. Waiting now for the spinal tap and bloodwork results. We were told that there was less than a 50% chance those results would give us a diagnosis, and that it was more likley we would need to return "in three to six months" for another EMG. Thanks to reading up, I have heard of people Dx'd with ALS by symptoms and EMG alone. It just seems to be the exception rather than the rule for sure. I was told we had features/ symptoms that were not typical of ALS. I still have to wonder though how much EMG can be relied on for actually Dx'ing the condition in a lot of people. It seems to me that ALS can be great for ruling ALS out because normal EMG = NO ALS. However, an abnormal one can mean such a wide array of things it's no wonder the Dr's often just start throwing conditions out on the table afterwards for results. My husband even asked if it was possible it could be nothing/ something that would clear up that had caused the abnormal result and was told "yes". Go figure! We were told however that ALS was "more than a remote possibility". My god, at least if this were cancer we would know it. This could take months and months to figure out, and I am sure so very many people on these boards have been there and back.

 

[Nikki J]

It is very true we need better tests for earlier diagnosis. Both to spare the horrible uncertainty and to initiate early intervention. There are what are called biomarker studies where researchers seek such tools for diagnosis and to measure progression to make better clinical trials. There are promising biomarkers in the works - spinal fluid and PET/MRI. Perhaps blood further down the line.

In the meantime there are people in limbo like your husband. If his EMG is not diagnostic then it is wait and see and that is very hard. There are people on this board who have indeed walked the road you now travel. There are others who started the walk but were given a lucky detour. Think for most though the EMG was the defining moment if everything else had been ruled out first. EmGs certainly can be abnormal in different ways most of them are definitely not ALS. Some are clearly ALS and the number who are truly told, it is not ALS yet but we must wait and see is smaller I think. If you have been reading the threads here on DIHALS please know most do not end up with ALS and many times their reported " suspicious" EMGs are not really

Please read the sticky on getting a diagnosis and be persistent in finding out exactly what is still in the differential hat is ruled out and what has to happen to get answers

 

[Lkaibel]

Thanks Nikki. I have said before the youth of this neuromuscular specialist concerns me- two years in practice past residency is someone I might trust with even MS, which has more clear markers but ALS and the whole crazy motor neuron and autoimmune spectrum not as much. I think that second EMG, assuming it does need to happen will be performed by a more seasoned MD and I am leaning towards the U of M. I feel this strongly enough that in the unlikely even he had a clear Dx for us on June 1st We would get a second opinion even if his word were not ALS.

Thanks for the reminder that the DIHALS who have been told suspicious for ALS most frequently don't have it. I am encouraged by my husband's sensory symptoms like numbness and tingles and lack of hyper reflexes. Mostly I am like everyone in this situation- hoping we are not facing this terrifying condition. Again, thank you.

 

[Nikki J]

If he is truly a neuromuscular specialist he presumably did a neuromuscular fellowship before entering into practice so he would have a great deal of experience There is a doctor at my clinic who graduated fellowship last year. She is not mine because I had a doctor already but if my doctor left I would see this new one in a heartbeat.

However a second opinion even when things are clear is pretty standard when you are dealing with the possibility of ALS and University of Minnesota looks to have an ALS clinic so I too would head there.

I was perhaps unclear. Many DIHALS have EMGs that are suspicious more in their own minds than in their doctors'. But as a former member used to say" it is not ALS until it isn!t anything else " AND the exam and Emg have to demonstrate unmistakable signs of ALS ( upper and lower motor neuron findings) too

 

[Lkaibel]

Makes sense about the EMG's. Yes he said he had seen over 200 ALS patients. Maybe I am just partial to the old guys

Trying to stay positive for my husband. He is positive and I am seeing stronger than I am.

 

[Lkaibel]

So tonight when we were out, my husband's arms would not stop twitching. He started looking at them "do your arms do this"? He asked. Twitching can be from a lot of things, I realize that. It scared me though, and it scared him. He has some twitching. He has some cramping. He has some weakness, or at least the Dr. said so on physical exam, beyond that from his obviously injured leg nerve that all seem to agree is causing his drop foot. A little in the other ankle he said, but that ankle has been getting beat up from carrying the other leg with the drop foot, so its not 100% sure there... We got a call on the spinal and blood, so far so "good", but there are more tests to be done at the Washington (!) lab. The EMG was as I said not definitive, but ALS was the second thing the Dr. mentioned as a possibility, after the autoimmune nerve disorders. My brain pounds sometimes, yelling that all of this is really just a long road to getting a Dx of ALS. I hope, hope, hope I am wrong.

Yet in 10 days since we heard that dread possibility my mind is already trying to move to "and then what"? We would cope, we would obviously have to cope. I have no idea what choices he would make honestly, but I would respect any and all of them, of course. I am here only to love and to help however I can - and then to survive losing him if that's what it ever came to.

We have friends from out of town this weekend (life goes on, somehow...)and we are doing are best to put this away until the Dr. next week, but it hangs there of course. Nothing to do here but live in the moment and take it as it comes.