Status
Not open for further replies.

ElleT

Active member
Joined
Jun 19, 2013
Messages
43
Reason
Loved one DX
Diagnosis
00/0000
Country
US
State
MI
City
Detroit Area
I'm from a C9 family and now having undeniable symptoms of ALS. I've actually suspected the disease was starting for about 9 months but was so hoping it was in my head or explained by something else. I now know this is not the case. Needless to say I am beyond devastated and have spent much of the last month crying and trying to wrap my brain around this.

I'm really not in a hurry to get an official diagnosis. Is there any reason to do it early? If I get a diagnosis early in the disease process doesn't that affect how long I can participate in trials? Any advice you can offer would be greatly appreciated.
 
I am so terribly sorry. Some people think you might get more benefit from rilutek if you start early. Other people think it is useless. Who knows? Diagnosis will get you ssdi if you are eligible. If your respiratory system is compromised at all early bipap is shown to increase longevity and quality of life. My sister lost 25 percent of function and did not know it so you can not necessarily count on how it feels. There is also the chance you are mistaken although having seen the disease up close and personal we know what the signs are. Regarding trials whenever you seek care I would have a very fuzzy memory for when symptoms started as they often go by symptom onset rather than diagnosis date. And the other side of the trial question is that without a diagnosis you can not participate and even if you are recently diagnosed you may be excluded because of some limitation of function. My sister was not able to do a trial because she lost her hands fast and it required some grip strength

Again I am very sorry you are facing this
 
Nikki, thank you so much for your reply, you are always so helpful. I've spent the last 9 months hoping I was mistaken, but the atrophy in my hand is leaves no doubt. Apparently it is known as Split Hand Sign and is "a useful diagnostic sign in early ALS". My hand looks just like the pictures online with obvious atrophy between the thumb and forefinger. I have not lost any function yet but it is my non-dominant hand so I don't know if I would notice subtle changes.

It is so hard having no one to talk to. My husband is the only one that knows about this but I'm not sure he really believes it is happening. I cry myself to sleep every night, he has not cried at all. He just keeps telling me to think positively and that everything is going to be okay.
 
Why does it seem like so many of the familial ALS are from Michigan? In answer to your question. Early diagnosis my help you and your husband know and thus, know how to support each other. What helped my PALS early on was a lot of supplements, anti oxidants, vitamins b,c,d, some others that I can not remember. Our ALS clinic in Grand Rapids is very good and supportive and if you have an ALS clinic near you, starting those relationships might be a big help.
I wish you well, I hope you are wrong about your diagnosis, but if you are right, the support that I see in this forum could be a great comfort and help to you.
Mary
 
Mary, yes there seems to be a lot of FALS in Michigan. It sounds like it may make sense to get an early diagnosis. I plan on getting a referral for The University of Michigan ALS clinic.

I know the fact that I don't have a diagnosis is allowing my husband the ability to deny this, up to this point it was allowing me to deny it at times as well. Now, with significant atrophy in one hand between the thumb and forefinger and subtle atrophy in the other, I cannot deny it any longer. If you search "Split Hand Sign + ALS" that is exactly what my hand looks like. The surprising thing is at this point I have no obvious loss of function in that hand but do have a lot of sensory symptoms. It is my non-dominate hand so I probably would not notice subtle changes in strength.

Did your ALS clinic recommend supplements or was it something you researched? I am thinking of starting the Deanna Protocol and also trying to figure out if there is anything I can do nutritionally as well.

I really appreciate all the support this forum provides. Right now I could really use it. I feel like I am living in a fog. It is so hard faking my way through the day pretending everything is ok around friends and family. Even with a diagnosis, I don't intend to tell my family, especially my kids (19 & 23) until I have to. Their whole world will be changing soon enough, but I want them to have normalcy as long as possible.
 
My dad and brother both have died from ALS. I have a 50/50 chance of getting this disease in my lifetime. I created a website for myself and others in my family who are impacted by this disease. The most important part of my lifestyle is being in a Ketogenic State burning ketones and fat 24 hours a day. I also exercise in a fasted state creating tons of Human Growth Hormone. You can read about these routines on my "musings" page.
 
Status
Not open for further replies.
Back
Top