hello im needing soom support tonight

[Kellycape]

im feeling a bit freaked out because so much is coming at me with the possibility of having ALS or PMA i know nothing about the real course of all this and im feeling particllarily alone tonight went to see the neuro sugeon monday for something else and during the mtg he looked at my hands and noticed the atrophy in the muiscles below my thumbs which i hadnt been at all aware o f Ive had weird neurological stuff for years with no diagnosis so ive lived with fasiculations myokemia so called fibromyalgia I just lived with it imagining it was some benign disease maybe connected to my cervical spodelithis I know i spelt that wrong forgive my typing im terrible anyway read about hand atrophy got scared now im here can anyo ne out there help me through this and tell me what this sounds like or has anyone had these presentations i would be so grateful for any information or support ive gotten myself into a bit of a state thanks

 

[Al]

Hi Kelly. Welcome. Sorry you have to be here but glad you found us. First take a couple of deep breaths. Freaking isn't going to make this any easier. ALS is a real bummer but I'd trade it for PMA any day. At one point they were thinking I had it but no such luck. If you can call that lucky. Where do you live? How old are you? Married, kids etc. Tell me a bit about yourself. I'd like to try to help but it is easier if I know something about you. AL.

 

[liz]

Hi Kelly.

I understand the anxiety you are experiencing now. These neurological conditions seem so mysterious and out of our control.

It sounds like you've been coping for a long time already so I have to believe you can cope with whatever else may be coming.

Try to think positive thoughts and stay in touch - let folks here know how you are doing.

Liz

 

[Kellycape]

thanks for the responses Al and Liz IM 55 female live in massachusetts with my two very sweet dogs i am pretty alone with this right now My sons birthday was yeasterday and he is off to england to visit his girlfriend through the holiday havent said aword to him because i want him tohave a special trip and not worry he lives in new york city I told one friend and now you guys iget pretty isolating when im in a hard place so it is a big deal that im letting myself reach out in this way and am very grateful for your quick responces. as you can see icant type well and have decided to ignore punctuation etc or iwont get much out i have my own business and it has been hard tocontinue working so hard in the midst of these mdapt and test apt and the type of work i do reguires me to be very focused and present. what do you guys know about hand atrophy and how long it would take before i start dropping things this seems so small but yet right now i seem to focus on these kinds of guestions i havent spoken with my two sisters yet for varius reasons god im all over the place sorry its the anxiety youknow ive had fasiculations myokemia weakness for many years no one could figure it out theni have had so many other distracting health problems endometriosis angioma in the brai n giant hemangioma in the liver weird stuff so i just got sick of going to these test and doctors so if i could ignore something iwould and i have been able to ignore this neuro stuff but then comes the atrophydid i mention i was seeing the neurosugeon for a simple follow up on moderate cord compression in my neck when he happened to look at my hands and off we go sorry im being so self involved and scattered i guess im just kind of a mess hope this is helpful i havent really figured out how to get back to these threads easily i forgot to mention im not very computer savy either anyway any information or stories that you coul share about symptoms progression or anyone who has had years of symptoms before atrophy would be much appreciated oh i was also diagnosed 5 years ago with lymes three months of iv antibiotics no reduction in symptomsagain thanks so much for listening i know you are all dealing with so much yourselves and if there is anything ive talked about that could help someone else dont hesitate to ask more with gratitude kelly

 

[liz]

Kelly -

Weakness and then gradually atrophy in my right hand was my first noticeable symptom. That started two years ago. My fine motor coordination in that hand is gone -I can't do buttons, pull zippers, or hold a pen correctly. Turning keys, typing, and handling eating utensils are a challenge. I still have enough grip to hold a steering wheel or manipulate larger objects as long as they are not very heavy. I had all the door knobs where I work changed to the lever style because I can't aways work round door knobs. Basically, I adapted. But my probem now is that my biggest adaptation was switching to my left hand for most tasks. Recently, the weakness and atrophy has started in my left hand so it looks like I will have to adapt some more. I think the list of things I won't be able to do for myself will soon be pretty long. I'm hoping occupational therapy can help.

Liz

 

[Al]

Hi Kelly. Off to father in laws 90 th birthday so have to be short. I didn't start dropping things until the last little while. My hand are pretty bad and as Liz says some things are a challenge. I just quit driving this month. I've been diagnosed for 3 years now and had symptoms for a year or 2 before that but didn't notice. I've started to use a walker the last few days and can go faster with it. Didn't want any part of it before but have used a wheelchair on occasion. Two hands still work for door knobs but we have mostly lever type in house now. Need help with socks deodorant and other mundane tasks. Gotta go rides ready. Later. AL.

 

[Kellycape]

liz thankyou again for your quick reply. It sounds very challenging to say the least, hopefullyyour ot will be able to come up with new solutions for new challeges. My question isdid the weakness precede the atrophy .In my situation the atrophy is visble under the thumb on both hands no painexcept ive noticed weakness in my wrist over the past year and tremor when i grip but otherwise i wasnt aware of any serious weakness my thumb definitely looks smaller on that hand but otherwise if the doctor hadnt seen my hand iwouldnt have known about the atrophy .Does that make sense to you? thanks Kelly ps your story of anxiety helped me not feel so crazy about mine!

 

[Kellycape]

hi al hope you had fun at the party. it sounds like your symptoms started in your legs Did your hands go at the same time or is one still stronger than the other.hope so Hearing from you all has helped me feel calmer and less alone although im still scared of what is to come just wanted to send you my appreciation

 

[CindyM]

Hi Kelly, Hope today finds you feeling a little better. I can SO relate to your story. My neuro pointed out that I had Muscle fasciculations and had lost muscle in one hand, and once he taught me what to look for I really started paying attention. Like you, I often wonder what comes next and what to look for.

Both of my local Doctors have mentioned ALS and they sent me to the ALS clinic for confirmation. This is where the story gets complicated. Please take note because there are 2 lessons here: 1, it takes a long time to run all the tests and rule out everything else. Second, there are lots of conditions that mimic ALS and only time will tell.

So, back to the story: the expert at the ALS clinic thought he saw something on one of the early tests and assured me back in July of this year that he would be able to diagnose me within the month and he suspected MS. But subsequent tests ruled that out, and here we are in November and he still can't or won't say what it really is.

Meanwhile I have lost a half inch of muscle in my legs and the muscles in the left hand are shrinking. I took fishing line and tied little pull cords on all my zippers and asked my haridresser to give me a cut that doesn't take much work and I am learning to brake with my left foot since the right leg cramps to the point where it won't go back to the gas after I lift off the brake. This weekend my husband is down in Florida selling the second home. We're paying off all debt in order to be in a position to live off one salary. And we are opening a funeral account.

Whew! Sounds like a lot, doesn't it? But the sunsets are prettier than I remember, and my favorite music sounds sweeter and all of this time laying around on the sofa gives me time to make new friends on line and keep in touch with old friends by phone. Next week I am going to apply for a hand-free phone since the one we have right now is too heavy.

So if you like you can play the waiting game with me and some of the others on this forum. We can watch Patty do a makeover of Captain Al and ask Lisa to tell us about her kids and get Grampa Al to tell us about the birthday party he went to.
And you can tell us more about yourself, if you like. Do you have hobbies? A job? Keep in touch and welcome to the board!

 

[liz]

Al, Cindy, Kelly

Al -

Giving up driving is a big one. How are you holding up with that?

Cindy -

You are way farther into this than I realized. Dick and I are having trouble planning anything. I was going to buy a car next spring, committed to chaperoning a Bronx Zoo school field trip in May (lots of walking there), and had a vacation to the NJ shore (lots more walking) planned for August, etc. Now I have no idea what I can commit to. It is very disorienting.

Kelly -

What sort of business do you run? Just curious.



Liz

 

[Kellycape]

thanks cindy for your message how is your other hand doing? how long have you been waiting for a diagnosis? sounds so complicated and confusing .i wish it was easier for you.this is all still deer in the headlights for me it has only been a few days since the neuro sshowed me the atrophy in both hands . hadn really noticed any weakness just wrist pain. did you have symptoms before your doc pointed it out . Glad you can enjoy the sunsets and the company . it does help. Liz- i have a psychotherapy practice now i know you can imagine what it was like for me to hear this news and go right back to the office. i actually pulled it off until i got on this site and poured out my fears. really appreciate the support and listening this is crazy making stuff. hard to hear how your plans are difficult to trust or comit to because of this crazy disease! does anyone know of any other causes of hand atrophy than Als? wish he hadnt seen it in a way because i was having a good day since then im obsessed Oh well life can be complicated as we all know i wish the best for you both keep the contact coming i like the comfort and knowledge we share warmly kelly

 

[Al]

Well since someone asked. The party went quite well. It is a 2 hour drive up north where the in laws live. Son in law drove because wife went up yesterday to help prepare. Daughter came with us. Party was attended by about 60 family and another 30 friends. Had light lunch and then family stayed and had dinner. Party was from 1 to 5. left there about 8 and back home around 10. Long day. Father in law left about 5 because he was pooped but at 90 that can be appreciated. There were a couple of guys I used to work with on the FD so it was like old home week. I am OK with the stopping driving I guess because like death and taxes I knew it was coming. Had hoped it wouldn't be so soon but you play the cards you are dealt. Not likeTexas Hold em where you get the flop,river and the turn and still get to bluff. I think is is easier as well when you make the decision yourself rather than being told to quit. So that's about it for me for today. Have a good one folks. AL.

 

[CindyM]

I agree that when your body has a mind of its own and things are out of control, making the decision yourself rather than waiting until you have no choice is a way to take back some control. I am still driving, Liz, but there are days when I know I shoudn't. Today I went to see my Mom in her nursing home - a 20 minute drive- and when I got back in my own driveway it took every ounce on my last energy to drag myself back into the house.

I think I was overcooked because I was out late last night at my niece's high school play. Yes! We also went to a school play this weekend. My neice is in High School but you could still see the students trying on adult roles up there on the stage. I bet you enjoyed your son's play.

Oh Kelley- I have been experiencing weakness for over a year. From what I understand by searching old posts on this forum, it seems to go in spurts. I think I am in a little bit of a plateau right now because all summer I was getting new symptoms every month. My main complaint right now is weakness of all my limbs, though I have yet to get to Grampa Al's point where I lock myself in the bathroom and then can't get off the toilet! LOL this disease can be entertaining at times!

Glad you had a nice time with your family, AL.

 

[liz]

I'm worried about the driving issue because I'm still working. Still able to actually operate the car but fatigue is an issue. I've told my older kids I'm not available to give rides to/from their evening social events because I'm just too tired.

My mom came up from Pennsylvania for the weekend to see my son's play on Friday night. Then it was shopping on Saturday and the movies on Sunday. It was our first visit since my diagnosed so it was difficult. We spent three hours talking, crying in a restaurant last night just so we could discuss everything away from the kids. She wants to help but is 70 and lives 6 hours away.

I'm exhausted from the weekend - had a hard time dragging my butt out of bed this morning. At least this is just a three day workweek because of Thanksgiving. We have my husband's family coming for dinner Thursday but they will do most of the work. I'm in charge of hors doevres so I can keep that pretty simple.

 

[CindyM]

I can relate! The school play went until about 10pm and I was wiped out yesterday. Plus Lee is in FLorida so I have to take care of Sam, our dog. Just these little extras make me too tired to move. I honestly don't know how you do it, Liz, with a young family and a job. I mean I still have the job but little energy left for anything else. Too bad your Mom is so far away...

PS. Thanks for sharing how you feel this morning. I know there are others with really serious issues, like eating and breathing, for instance. But it still helps to know there is at least one other person experiencing the same things as I am right now!