Recently diagnosed and so many questions....

[Hope4Me]

Hello all -

I found this forum a month or so ago and held back on posting since I just don't know what to say really. I was diagnosed late November and felt so alone for so long. My appointment was late in the day and though I was at a great facility, all support folks were gone and I had no paperwork, literature or resources to turn to in the interim. Over the last couple months I have reached my social worker and recently saw many of the support folks but still feel like I don't know what's next except more weakness.

I probably sound like a whiner and I'm not really. I've been pretty strong throughout this but I am noticing more weakness now and I am barely walking. The arms started getting extremely heavy recently and my speech went south over a weekend. I slur and my mouth is so tight its difficult to be clear. I do have PT 2x a wk and they are pushing exercises for the arms but I find that this occurrence has really discouraged me. I thought as long as I have my arms and breathing, I can cope longer so I am going to fight this and try to turn it around as much as possible.

My home is a two story and its just my 82 yr old mother and myself. This illness has really thrown her for a loop and she is a wreck. The stress on her is unbelievable now and I am at a lost to know how to help her. My family (small as it is) is in AZ and we are in Norther CA so any physical support comes from one or two friends - thank God for them. They do not believe the diagnosis and that makes it hard to have someone to talk to. They just feel that I need to get up and out and keep moving almost at any cost. I totally understand the moving thing - I know I need to but some days are so filled with exhaustion and pain that its hard to get out.

My Drs tell me I am still pretty strong and appear that I will progress slowly but with the arms feeling this way, I wonder. I need to stay positive so I am going to keep on going on - though some days are tougher than others. My breathing is still 100% of expected and I am feeling extremely blessed to have that.

To add to the ALS I have a large mass on my left lobe thyroid that may be causing my hoarseness and some breathlessness which makes me short of breath at times when I try to talk too much. I understand this is coming from my vocal cords. The Drs are strongly suggesting I have it removed soon since my respiratory is still good. Once that starts going, I will not be a good candidate and if it truly is pressing on my windpipe I could have more complications with the ALS. Really mulling this over - has anyone had to have surgery after they were diagnosed?

I know this is getting too long so I will cut off and just ask the main questions I hope you all can help with based on your experience.
1) Medications - Riluzole - I seem to be tolerating this and am up to 1 1/2 pills a day. I will go to 2x soon. I just don't feel great on this - is it typical?
2) Baclofen - I cannot take this at all. I get very weary and weak and sick to my stomach. Is there anything else that has worked for others. The spasms, twitching and tightness went way down for a while but now its back and I even have pain and aches. I am at a loss to know what to do. Ideas?
3) Fatigue - I am not sure how much to do. The support folks have told me not to overdue and that you can progress faster if you do but I am not sure where the line is. I am afraid I am wasting away while I try to continue to work (from home). What is the signal?
4) B6 and B12 levels - I have a level of 5x higher than the highest recommendation in my blood and I was not taking excessive amounts of B6 or B12. The B12 is not that high but still higher than the highest it should be. No Dr seems to want to explore this but I see these levels of B can cause neuropathy. Anyone have any experience with this?

Sorry this is so long guys, I am just lost and trying to plan what I do next - starting to get scared.

Thanks for listening -
Help4Me

 

[Nikki J]

Welcome I am so sorry for your diagnosis but glad you decided to post you are truly among friends here.
I found that I was queasy for the first few weeks of riluzole but then was ok.

Some of us get very fatigued and it is part of our ALS but stress and depression can drag you down as well. It is important to get enough rest and not to overdo. My neuro says if it takes more than one hour to recover from a physical activity it was too much. Try breaking tasks down into small parts.

My sister had several surgeries since diagnosis. Definitely the sooner the better when you are well nourished and respiratory system is good

Is PT doing strengthening exercises with you? You can't build back muscle lost to ALS not all PTs understand

Your living situation is tough. You are going to have to figure out something for you and your mom. I hope your social worker is helping with this. It is really important to plan ahead for all of us but especially in your situation. Think outside of the box and don't rule anything out

Again welcome but sorry

 

[swalker]

I am sorry to have to welcome you here.

Like you, I was hesitant to join. It took me about 4 months after diagnosis to do so. I am so glad that I joined and started participating. I have been warmly welcomed, as I am sure you will be. I am sure you will find the folks here kind, helpful, and supportive. I sure have.

I was also surprised by the level of fatigue I experience. I was not prepared for that. I have a tendency to overdo, and my wife often reminds me of the doctors' advice to not over do things.

My neurologist told me that if doing something (such as going shopping) causes me to be too tired to do that same thing the next day, then I have overdone it. I run into this situation way too often as I lean my new physical limitations.

I will also echo Nikki's comments about your living situation. It will obviously not work as the disease progresses. I encourage you to confront that issue early and make the necessary changes. It is unpleasant to face, but far better to do so now than later.

As with all PALSers and CALSers you will be in prayers.

Steve

 

[Hope4Me]

Thanks very much for your reply Nikki,
I am so sorry to hear you are the 6th person in your family to be attacked by this disease! At this point, I do not know anyone in our family that has had ALS. I hope my son does not every have to deal with it. The Dr. said most likely not but I get it has to start somewhere in a family.
I feel so lazy and awful watching my poor mother flitting around trying to do for me. With the Rilzole, I find I must keep something in my stomach or I will get waves of nausea. This took me a while to know that was what it was. I didn't feel that way before so I think that's what it is. I hope its worth it since my Dr. says it give about 10% extension to your muscle life.

Thanks again for your advise and support - its so nice to have somewhere to go where folks are experienced.

Regards,
Rhonda

 

[MaxEidswick]

>I will also echo Nikki's comments about your living situation. It will obviously not work as the disease progresses. I encourage you to confront that issue early and make the necessary changes. It is unpleasant to face, but far better to do so now than later.

Ditto that!

Also do contact tha alsa & local mda asap. are you a veteran? that iis important.




like all the others, sorry to meet you here but welcome!

The next months will be an emotional roller coaster. Try to go with the flow, expect fear, anger, bitterness, and a new awareness of life. I have found that being active here on these forums has helped me in way I cannot explain, but you will see.

before trying miracle cures, etc., ask here, go to alsuntangled dot com.

Lastly, anxiety can be debilitating so beware.

Lastly, lastly DON'T FALL, take vitamins, keep your calorie intake up, and stay away from sick people, especially w/ respiratory problems.

Kind regards and warm welcome,
------

> I do know it is healthier to be thankful for what still works than to resent what doesn't (easier said than done )

kind regards,



Max - Friday, February 06, 2015 3:54:25 PM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


.

 

[Hope4Me]

Hi Steve,
Thanks for your warm reply. I am hoping to get the house squared away soon. We are doing some improvements to help sell it and working toward a good plan so we can move to AZ where I have family. There are so many things to consider and plan for including a horse, truck, trailer and supplies. It sounds funny but this is one of those very difficult decisions. Its not like a house, its a living breathing life that depends on me and I cannot be there for her. Thank God she is at a good place where people do look after her. I will not be able to afford her much longer and need to find her a great forever home and that haunts me a lot. Dreams of riding in the woods are now behind me so I just need to get it done.

Have you heard of any other muscle relaxer that works but not as harsh as the Baclofen?

Thanks again for your reply - I am very glad to have found this forum because now I don't feel so alone!

Regards,
Rhonda

 

[Nikki J]

Glad you are working on a move. Good luck with finding a forever home for your horse.
Re riluzole. Fat decreases its effectiveness. A fat free food with it is fine though so just choose wisely ( your doc probably told you this)
Fortunately FALS is rare, so every hope this is not genetic for you

 

[Hope4Me]

Hi Nikki,

I responded to your message (btw thank you!) but I don't see it posted here so perhaps I flubbed up. I will be dealing with my home situation soon. We are trying to do minor improvements in order to put on the market but we are so limited on what we can get done in a day. I am trying work from home as long as I can - at least to get through the improvements and packing etc. then inform my employer. My manager knows now and she has been very helpful but I fear others in my company many not be as understanding.

This site will be a gift from God for me since I am at the beginning of this and am very confused about the way this will all go - i.e. financially, physically, legally etc. I am probably like most just trying to feel my way in the dark at this point.

Thanks for your warm welcome!

Rhonda

 

[Hope4Me]

No one told me about the FAT in food. I am glad you mentioned that. I just asked the nutritionist that the other day and the said that a higher calorie and fat diet was better than high protein and to not loose weight - too bad I had just lost 35-40 in 4 months! I was trying to get healthier before I learned I had ALS because my back was hurting and I had developed a drop foot (first sign of my ALS) and they thought it was my bulging discs.

Anyway - I will watch the fat.

Regards....

 

[Nikki J]

Fat just in association with riluzole. My directions read take 2 hours after food and one hour before food but I was told it is fine to eat fat free food in that time period. Outside of that time period fat is fine. Maintaining weight is crucial! So yes listen to your nutritionist and eat!

 

[Hope4Me]

Hello --
Thanks for your welcome and advise. Let me ask you about the local MDA and ALS Assoc. I am working with UCSF ALS Center and have spoken with the Goldenwest Chapter. They are in SF which is a couple hours away so it makes it tough to get support that far away. They are however, sending a local chapter Occupational Therapist to review the house soon and also see about fitting me for ankle braces. Is this why you say this?

I do have to register as an ALS patient on the new registry site. I was given the website address just last week and hesitated only due to my work. I will do that this week though. I understand they are trying to find some commonalities between all of us to see if they can find a link to the cause.

So far I have PT through the local hospital PT but I have to go there and sometimes that get rough. I need to get out of the house though so I haven't complained about that.

Thanks again!

 

[Hope4Me]

Got it Nikki - thanks!

 

[smoochiegal]

Hi Rhonda,
Welcome to this awful place where everyone is wonderful. You will not be alone in your journey here.
My dear husband was diagnosed in August. It was a rollercoaster. It still can be, but I am learning to take one day at a time.
At first I was worried about all the things that needed to be done and how I was going to do it all... my dear brother gave me incredible advice... he said take a day at a time and for the big things (like planning to sell the house or stay) plan in 3 month increments. That way, you make the plan, know what you have to do but don't get ahead of yourself.
Take it easy. Come here often.
Hugs to you,
Cheryl

 

[Jeanau]

Hi Rhonda, I was just diagnosed in December. As everyone says, when we're newly diagnosed we're full of emotions and questions. I've had some great response from the local ALS chapter and have already borrowed a light weight wheel chair and bath chair from their "loaner closet". We had stair lifts installed a few weeks ago, and I've been fitted for and picked up my leg braces at the beginning of this week. I'm definitely losing my strength in my legs, and it is very disconcerting. But, my faith is strong and the people here on this board are great! Welcome and when you can just breathe.

 

[Janie H]

Welcome Rhonda,
You will learn a lot from this website, most of all remember that we honestly care.

Janie