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Lynk

Active member
Joined
May 20, 2015
Messages
31
Reason
PALS
Diagnosis
05/2015
Country
US
State
FL
City
Tallahassee
Hello, I have been on my journey to try to figure out what is wrong with my rt fingers, hand and arm, beginning in Oct. 2014. It started with a general feeling of weakness in my grip, but nothing too alarming. Then I found myself unable to pinch a clothespin at all with my thumb and forefinger. That was alarming so I went to my Primary dr. who sent me to my first neuro guy. Shortly thereafter I was able to pinch the clothespin just a little bit and it has remained that way since November. I was really freaked out at the start as I was sure it was ALS.

But over the last 6 months 3 local neurologists have all said they thought that ALS was unlikely after 2 EMG/NCV tests that were unremarkable, so I started to relax. My brain MRI and cervical spine MRI were normal, and no improvements have been gained through PT. or chiropractic. One guy in February thought maybe I had a small stroke, but the MRI said no. He determined that I had significant rt. arm weakness not just in my hand. I was happy to think it was a stroke, but my main neuro doctor wasn't buying it. the idea of thoracic outlet syndrome was floated...but in the end, when nothing has improved, he sent me to the chair of neuromuscular at Shands Hospital in Jacksonville....appt was May 12, 2015.

Dr. Berger spent 2.5 hours with me. He did a vast array of strength tests and a third EMG/NCV test that also included my left arm, rt. leg and back. He was much more methodical, thorough and scientific than the other guys. He assigned numerical values to my strength tests. In the end he said he saw active nerve abnormalities, and my weakness with no pain or sensory deficit led him to the opinion that I have ALS. He was very grave and serious, but quite compassionate. However, he will not make an official diagnosis until I come back in 4-6 months to see if it has spread, stayed the same or improved. I wish I didn't trust his expertise, but he really seemed like he knew what he was doing.He recommended that I start taking riluzole now, and I'm researching whether I want to do that.

So here I am in limbo hell. I have to live as if I both do and don't have ALS. Everything has changed and nothing has changed. I just feel so sad and tired. I want to bury my head in the sand and pretend this isn't happening. I know there are things i should do while I am still so functional. I have a good job and a wonderful family..great husband, 2 daughters who live nearby, 61 years old. Another of our challenges is that my 90 yr old mother had a stroke 3 years ago and lives with us. She requires 24/7 care and I'm a big part of it.
Thanks for listening.
Lyn
 
Sorry to welcome you. The uncertainty is hard i know. We all need to seize each day whether we have ALS or not. It is a lesson I learned as part of a FALS family. You have challenges at home. See if you can get more help even if you don't need it right now. Stress and fatigue are very bad for us. You will see here many opinions about riluzole. I urge you to try it. People will say it extends your life by 2-3 months what is the point. The original research actually showed extending life by 10 percent and it was done in relatively advanced disease. I have been told it works better early in the disease possibly extending life by as much as 25%. If you are as it seems a slower progressor this could be a big deal. If you try it and have side effects you can reevaluate. I had some GI issues the first three weeks but have been fine since so I encourage you to give it a fair shot.
It sounds like you are in good hands finally with your current neuro. Take care of yourself. Get rest destress eat well. Don't lose weight!
 
As you do not yet have an official diagnosis this would be a good time to review and possibly increase your life insurance.
 
Greg, I would be so surprised if any insurance company would give me life insurance. I did explore it a little bit not so long ago when I was thinking about retirement and there were questions about any recent visits to a doctor. I may not have a firm diagnosis but the red flags would be waving wildly in their faces.

Nikki, I'm really trying to figure out the Riluzole. I see my local neuro guy on June 1 and hope to get some more information. Are you allowed to drink alcohol on it? I have to say that a good glass of wine is a great pleasure for me. The thought of extending my life by a little bit in exchange for never being able to drink wine again is pretty depressing to me.

I went to an acupuncturist and Chinese Medicine specialist highly recommended by several friends and the treatment was fine, but then I got the diet prescription and it was so extreme that I just said forget it. If I can't eat and drink what gives me pleasure as long as I am physically able do it I just don't see the point.

Thanks for your comments.
 
My sister certainly had a drink most days as long as she could swallow. If you do not have liver problems and you drink in moderation according to the prescribing info it is ok ( I just looked it up as I was curious). From the prescribing info ", patients being treated with Riluzole should be discouraged from drinking excessive amounts of alcohol. "I also looked at the handout I was given by my clinic. It says if you drink discuss with your doctor. Betting this is to find out how much a person drinks. It does not say don't drink. So ask your doctor to be sure but the info I have seems to say that you would be fine with your glass of wine and my sister certainly was
 
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I would say live you life as if you do not have ALS. Why? Because if you do there is absolutely nothing that can be done for you anyway (other than the aforementioned riluzole). So live your life as if you actually have a future until you are told you dont. I very much hope you do not have this awful disiease, and by the way, despite what people say, a significant number of ALS patients do gave sensory loss, myself included.
 
If you choose to start riluzole, Lyn, (BTW, welcome to the dubious honor of the club), it will be important to get a baseline and then regular LFTs (liver function tests) at the beginning. They flag alcohol because it acts on the liver as well. If you are "normal," a daily glass of wine should not drastically alter your liver function w/ riluzole. But if it does, you want to know sooner rather than later.

It sounds like you have strong support in dealing with whatever you have (though if the doc rx'd riluzole, there probably aren't too many differentials left), and for that you are very fortunate. As for life insurance, if you are willing to pay, there are sometimes smallish policies available when you join certain trade associations/AAA and things like that, if you qualify, that are not medically underwritten w/ the health questions. Normally, these are not a good deal, but you may want to explore. Also, if your husband has dependent life insurance that he can add/increase, that is another thought.

Another issue you might want to look into, of course, is options for your mom. As others here will testify, caring for two people will likely be too much for your husband, and there will come a time before that when you won't be able to do much physically for her as you do now. It doesn't sound like you're a fast progressor, so you should have some time to consider, but consider I would. You don't want to make any hasty choices later.

Thirdly, perhaps given your mom it is not an issue, but this can be a time to look at the suitability of your home for the future years, assuming a power wheelchair, Hoyer lift, the need for 36" passages, exterior access to an entrance, toileting, a roll-in shower or some other option, etc. If you need to move for any reason, it is easiest to do it when you are physically more able.

My best advice overall, to all, is to have a nice holiday weekend.

Best,
Laurie
 
>As you do not yet have an official diagnosis this would be a good time to review and possibly increase your life insurance.

Ditto that!
 
Do not start any ALS mess until you check on increasing or getting life insurance or long term care insurance. Most companies have a direct question on their form. Right now you can answer no. I got to continue my insurances such as life, disability, critical illness (includes paralysis), dental and long term when I took disability iretirement. Also check into social security and Medicare benefits.
 
>when I took disability iretirement.

missing the classroom, , Tracy?
 
All I can offer is whether you have a diagnosis or not life can continue in many ways, the same as it is now......with some modifications. Initially you will have doctor's appointments and a lot of emotion to work through. But the path is really the same....check the stickies at the top of the general discussion forum. Lots of great info

If you are a veteran, contact your local pva office once you are confirmed. In the meantime you can get on the health insurance.

Mostly, take a deep breath and live. Post diagnosis is all about living your life to the fullest, whatever that is for you. Travel,garden, do the things you love. Just get plenty of rest and don't overdo it.
 
Steph, awesome info there for lynk. Valuable information for many of us in limbo.
Sometimes I get so wrapped up in what I don't know, and where we are headed, I forget about where I AM.
A little perspective every now and then is good for us all.
God bless, Janelle x
 
Thank you all. I'm coming to grips with some decisions I had hoped to put off such as moving my mother to assisted living. I can't quite imagine it yet and I think it will be rocky, but my ever so patient husband is not going to be able to cope as I lose strength and she requires ever more help. Even if by some wild turn of events this isn't ALS I have, it is something that isn't good. So lots of change and emotions around getting her moved and settled. Plus the increased cost of her care is going to be a stress.

I do appreciate the Be. here. Now. sentiments that have been expressed. I'm trying to appreciate lots of stuff, but I'm sure you have experienced that sometimes that just makes you so damn mad. I don't want to appreciate everything. I want to take it for granted!

I do ok through the days usually. Nights are full of demons.
 
Nights can be Lynk.....that is why many take sleeping meds and/or anxiety meds. I was having panic attacks in my sleep worrying about my pals. Some medication helped me a lot.
 
Hello, I have been on my journey to try to figure out what is wrong with my rt fingers, hand and arm, beginning in Oct. 2014. It started with a general feeling of weakness in my grip, but nothing too alarming. Then I found myself unable to pinch a clothespin at all with my thumb and forefinger. That was alarming so I went to my Primary dr. who sent me to my first neuro guy. Shortly thereafter I was able to pinch the clothespin just a little bit and it has remained that way since November. I was really freaked out at the start as I was sure it was ALS.

But over the last 6 months 3 local neurologists have all said they thought that ALS was unlikely after 2 EMG/NCV tests that were unremarkable, so I started to relax. My brain MRI and cervical spine MRI were normal, and no improvements have been gained through PT. or chiropractic. One guy in February thought maybe I had a small stroke, but the MRI said no. He determined that I had significant rt. arm weakness not just in my hand. I was happy to think it was a stroke, but my main neuro doctor wasn't buying it. the idea of thoracic outlet syndrome was floated...but in the end, when nothing has improved, he sent me to the chair of neuromuscular at Shands Hospital in Jacksonville....appt was May 12, 2015.

Dr. Berger spent 2.5 hours with me. He did a vast array of strength tests and a third EMG/NCV test that also included my left arm, rt. leg and back. He was much more methodical, thorough and scientific than the other guys. He assigned numerical values to my strength tests. In the end he said he saw active nerve abnormalities, and my weakness with no pain or sensory deficit led him to the opinion that I have ALS. He was very grave and serious, but quite compassionate. However, he will not make an official diagnosis until I come back in 4-6 months to see if it has spread, stayed the same or improved. I wish I didn't trust his expertise, but he really seemed like he knew what he was doing.He recommended that I start taking riluzole now, and I'm researching whether I want to do that.

So here I am in limbo hell. I have to live as if I both do and don't have ALS. Everything has changed and nothing has changed. I just feel so sad and tired. I want to bury my head in the sand and pretend this isn't happening. I know there are things i should do while I am still so functional. I have a good job and a wonderful family..great husband, 2 daughters who live nearby, 61 years old. Another of our challenges is that my 90 yr old mother had a stroke 3 years ago and lives with us. She requires 24/7 care and I'm a big part of it.
Thanks for listening.
Lyn

Hi Lyn,
I'm in the same boat. I saw Dr. Pulley at Shands in Jax after two dirty EMGs at Mayo In Jax. I see Pulley again next Wednesday. Last time he saw atrophy in left arm and left leg, left thumb, weakness in some muscles. He wanted me to come back in six months but I told him I had to come back before June 30 for financial reasons. He agreed. Meanwhile, I don't even have my return appointment for Mayo set. I live alone with a toy fox terrier. No husband, no kids, I'll be 60 in August. My faith and friends from church are keeping me going. So.....I'm familiar with the 9th floor of Building 1 of Shand in Jax. Feel free to e-mail me.
 
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