Just Diagnosed

[gooseberry]

Steve had clinic today. Baclofen got mentioned no less than 4 times. Steve doesn't have enough cramping anymore t need it. Its as if his muscles and nerves are about done. He had the fascics, then the cramps, now there is nothing and they aren't working well even if they haven't atrophied visibly yet. Clinic to me today seemed like a big waste of time. Nothing constructive, no suggestions, so I am thinking why did we waste 4 hours?

Pete, after years of antibiotics for my son who developed asthma, food allergies, and allergies to every living thing plant and animal, the ent suggested a good probiotic and digestive enzyme. We have all been on them for 5 years and they have made a world of difference. My son is very rarely ill now.

 

[anderkling]

Pete, thanks for sharing openly about some of the struggles. Sounds like your wife loves you dearly and can't bear the thought of losing you. I hope that it would be something other than ALS, as I hope for all of us here. After all, 10% of cases are misdiagnosed. For myself I have come to accept I have ALS. There's a certain "coming to terms" or a peace with that. I hope you and your wife will have much more time together, and many wonderful, loving memories in the months and years to come.
- Charlene

 

[Nikki J]

Are you saying 10 percent of people diagnosed with ALS do not have it? Where did you get that statistic? Given the reluctance of most specialists to give a definite diagnosis until everything else has been ruled out I find that very surprising and would be interested in reading about it

 

[anderkling]

Nikki, I found that statistic on a few medical websites. I mentioned it to my neurologist (who specializes in ALS) and he confirmed it was true. I personally know of a few people who were misdiagnosed, one with whom I speak on a regular basis. After having ALS for over 7 years, a new diagnosis of MMN is being explored, since the disease has never progressed past her arms.
- Charlene

 

[Nikki J]

Fascinating. I wonder if that statistic includes the people who are referred to neuromuscular specialists from a regular neurologist with possible ALS who then turn out to have something else. For people who are settled into the diagnosis it does not seem to happen often here I can think of maybe 4 people. But I can think of several people on DIHALS who said their local neuro said ALS and then it was not. I hope your friend does have MMN. That would be wonderful

 

[Clearwater AL]

Charlene, I guess in this is the world of the rare, for sure, being that you personally know a "few" who were misdiagnosed with ALS is really rare. So many here who have been diagnosed with ALS/MND personally do not know of anyone else with ALS/MND because of it's rarity. That 10% is a pretty good chunk of a disease as rare as ALS and PLS. Do you remember what medical web site you saw that statistic? If your Neuro agrees with that statistic I'd consider another Neuro because he/she may be just guessing with you too.

 

[tripete]

The 10 % number is somewhat common in the "most ALS is Lyme disease camp" it is also common among other "earthy crunchy" healing alternative sites. My wife has read a ton on misdiagnosis hoping beyond hope that that is what it would be.

Most of us (and most caregivers) have come to accept that we have ALS as we have watched are bodies be ravished by it. Some have grown bitter with it, some are still in denial, and some are trying to face it with humor. I think the best we can do is to try and enjoy each day that we have left with those we love. I am also making it a personal goal not to be bitter or mean, a goal I often fail at, but something I desire none the less.

I take a ton of supplements, to many in my opinion, but my wife believes that it will help me so for her peace of mind I take them. She talks about misdiagnosis even after we have had three confirmed diagnosis by ALS neuro muscular doctors. She despises the medical profession because of how long it took to get a diagnosis then because of what the diagnosis is. So she deals with by trying to "cure" me.

I will let her try and will support her the best I can, I know that I need her and will need her even more as the days progress. For me, love is about serving the other person, not being served. So if she tells me there is a 10% misdiagnosis rate, I will not argue, but hope with her and support her in any way I can.

 

[nebrhahe53]

I can believe the 10% number at the beginning, but after years of tests when everything else has been ruled out, lets face it, its almost certainly ALS.

 

[lgelb]

There's a line in a review article that reads something like, "When in full bloom, ALS is unmistakeable for anything else." Tripete, your wife will come to that point, hopefully soon, for it will be harder for you to do a supplement cocktail at some point, and you two have plans to make. There might be a time when you ask her what more she needs to see, possibly another PALS so she can see you side by side.

Until then, you are taking a very rational approach and I admire your patience, which I would not have.

 

[mcwtlg]

Wow, that 10% stat is rather interesting. I have only known one person who had ALS (my mom's best friend...which is why I dread telling her about my diagnosis) but have never met anyone who had Lyme Disease. I guess I need to read up on Lyme ... I know nothing about it.

As a side note, my PCP had never met anyone with ALS before me (but that was before I was diagnosed so my next yearly physical will be interesting for him) but he has been practicing medicine for about 15 years.

 

[lgelb]

ALS Untangled in a review available online, reviewed records of 4,000 PALS tested for Lyme, w/ 30 positives, characterized as the same ratio as the general population.