Brother In Law Died, & New EMG 2/17

[Lkaibel]

My husband's elder brother had been ill for awhile (cancer) but we had no idea he was near death. Apparently relatives had decided to spare us the death watch. So today my husband found out that his brother died this morning. His son was with him, and he was nearing 71. It was a jolt for sure, though I understand the reluctance to share given our situation. The memorial will be in the Spring back here in Minneapolis (Brian's brother lived in New Mexico the past few years). Brian is doing alright with it.

Yesterday, a date was set for the repeat EMG. This was mentioned in December, but with a date is now "real". This is being done because Brian's progression, while there has been slow since his 6/30/16 diagnosis and then there are the two facts that really seem to perk their interest: his reflexes are slow and getting even slower, rather than having hyper reflexes and his EMG at the time of diagnosis showed current and active denervation in two, not three areas and did not show "short wave abnormalities". The diagnosis was one of "in all reasonable probability this is ALS".

Info on what else it could be if this Dx was wrong is not really forthcoming, and my impression is that the repeat EMG is a "let's make absolutely sure" thing rather than a true suspicion it is anything else.I am annoyed to even have anything else raised as a possibility at this point because I know it will be snatched away again, so I am trying not to even think "what if" so hearing it really is ALS as they said in June does not break my heart again.

I am embarrassing myself a little. My husband loses his brother, is having another nasty EMG in less than a month and her is ME, ME, ME again,

Anyway, I am not asking questions or seeking advice, just a rambling little update on Brian and of course me :?

 

[KimT]

Lenore,

Cut yourself a break. You are a wonderful CALS and I know how awful it feels to get EMG after EMG. They did the same thing with me....at three clinics due to my very slow progression the first year. Just know Brian and you both are in my prayers and thoughts. I detest EMGs. They never hurt much but listening to the noise bothered me. I have an absent reflex in my left ankle and it has been absent or trace since 2014. I hate that we have to always second guess their "guess" on the diagnosis. I just wish they would find a cause, a treatment, and a cure.

Sorry for the loss of your brother-in-law.

 

[lgelb]

Sorry to hear about your brother-in-law. There is nothing wrong w/ framing these developments from your perspective! You're still you. Hyperreflexia is not a given in ALS (the opposite was my husband, throughout) and you are right not to get hopes up. But if they can't give you another and treatable differential, I wouldn't do it (sorry for the unsolicited advice

 

[4tloml]

Lenore, so sorry about your brother-in-law. Uncertainty in a diagnosis can be so stressful. Hoping if Brian goes through the next EMG, it'll be definitive one way or another. My husband was diagnosed, then 3 months later undiagnosed, then 16 months later rediagnosed. At the "undiagnosis" we were thrilled he'd "dodged a bullet." But as things progressed, it became clear he was dealing with ALS. By the time he got his final diagnosis, we were just wanting them to "name the beast" so we knew what we were dealing with and could look it in the eye.

All that just to say I know how hard all the second-guessing can be. And as a CALS, it IS about you, you, you, too! This is a perfectly appropriate place to share your concerns. Sending hopeful thoughts that if Brian does go through with another EMG you get some solid answers.

 

[scaredwifetx]

Lenore, so sorry about your BIL. Please don't apologize. That's what we are all here for. We are here for ourselves and others. Every post here has the potential to help someone else. I know how tough this must be for you. I would feel the same exact way. Both scared and hopeful at the same time. I certainly wish this could be something else.

 

[Lkaibel]

Thanks Kim for your kind words about me as a CALS. Laurie, there is defintely an argument for not even going through this EMG. I mentioned it to Brian but he said that since they just want to do his effected arm and leg and he does not thing the test is "that bad" he will go through with it even though he thinks its likely bogus to even do. As he said, sometimes you do win the lottery.

tlomi, what you describe, diagnosed, undiagnosed, rediagnosed would be my worst nightmare, and it's not the first time I have heard of that. I am so sorry that happened to you. In the highly unlikely event anyone tried to tell us Brian did not have ALS, I think I would only believe it about the time another treatment for another condition started to actually work. Barring that, it's ALS. That's my takeaway from nightmares like yours.

Thanks everyone for letting me know I am not being selfish taking about myself at these times. It really helps.

 

[pittsburghgal]

Lenore, I am so sorry for the loss of your brother-in-law. Please don't feel that it is selfish to be talking about your self at these times. Sometimes that is the only thing that can help.

We also went through the diagnosed, undiagnosed, and rediagnosed cycle with Frank and it was incredibly painful. I really hope that you do not have to go through that.

Sharon

 

[Narrowminded]

Lenore - I am so sorry for your loss. I know how tough that can be having just gone through it with Brian. Please, please don't concern yourself with thinking about you. Yes, it's Brian's life that hangs in the balance, but so does yours. As CALS and spouses, it's one of the toughest things we will ever do.

Hugs,

Sue

 

[Lkaibel]

Thanks Sharon, and that confirms my resolve exactly to say it's ALS until and unless we say improvement from another treatment for another condition.

It happens on occasion, I realize that too. Yet it seems to me it happens mostly when the diagnostic process the first time around was not complete. I read recently about someone who turned out to have MMN and made a full recovery, but he had been Dx'd with ALS without a full body MRI (weird, huh?) and not via an ALS Center (which I think is critical). "Neuromuscular Specialist" is all good, but I think you need two opinions AND an ALS specialist.

We were diagnosed at the University of Minnesota ALS Clinic by Dr David Walk. It has been called one of the best ALS centers not just on the country, but the world and some swear by it over Mayo. He confirmed what a young Neuro suspected. The small catch was that it was an "in all reasonable probability" diagnosis, and we were told that some would not be diagnosing because of the exceptions I already noted and the lack of UMN signs.

I suspect though that PARTICULARLY the "best of the best" tends to itch to make a case fits the classic diagnostic criteria and if it does not they stay in a "testing, testing" mode. Well, I know some cases of any disease never fit the full diagnostic criteria. My sister in law has MS and has for decades and her case has always been unusual.

Yet another real issue is just how poorly understood ALS still is. Heck, I just heard a debate questioning if we really understood much of anything about the condition, up to and including if it really belongs in the MND family of conditions (so now it's NOT about Motor Neurons maybe? I don't even know what to say...) . Not to mention, do we really know for sure that PALS who die in a year or two are suffering the same condition as that guy who is walking into his clinic appointments seven years post Dx? Not an urban legend. Our Doctor has a patient like that.

Frustrating. The lack of answers, the lack of treatments. I am with Kim. Find a cause, a treatment, then maybe just maybe we will find a cure.

 

[Lkaibel]

Thanks Sue, you are so right this is one of the toughest things we will ever do.

 

[vltsra]

Dear Lenore, I'm sorry about your brother in law. I hope you and Brian can find some comfort.

I am in a somewhat similar situation with my husband. He was diagnosed at Kaiser with one EMG and denervation in 2 areas; the doctor did not bother to test anywhere else. He did an MRI on his neck. When we went in for the second opinion, no additional testing was done; the MND specialist simply reviewed the results of the testing and confirmed the diagnosis. He told us that my husband has a "slow progressing variant". Thus far, his weakness is limited to his left hand and forearm. We are about 15 months in.

Frankly, you don't sound to me as though you are just talking about "ME, ME, ME". We have all gone through such emotional pain dealing with this illness, no matter where we are in the progression. ALS affects BOTH PALS and CALS and you have every right to your emotions. Your post expresses your concern about Brian too, and what he is dealing with losing his brother and going through another EMG. You are in our thoughts and prayers here. I also try and remain hopeful for everyone here (PALS, CALS, and those who have lost their loved ones) that a treatment will be developed.

V

 

[affected]

Hugs Lenore, you are part of the equation and all of this directly affects you as well xxx