View Full Version : Unsure of future
Hi everybody,
I was hoping maybe some of you could read my post and try to give me advise. I have been struggling for 15 months to be diagnosed and don't even have a follow-up with a doctor as of now! It started l11/5/05 when I felt this electrical type shooting in my head, my heart rate quickly went up and stayed in the 150's for quite awhile. This happened many more times for several months. I had cardiology workup and went for a cardiac ablation. My heart rate went to 300 bpm when given the adrenalin and there was nothing to ablate!. To make a very long, very horrific story short, I now have fasciculations that look as if a bag of microwave popcorn is popping under my skin. They started in my legs and have moved to ribs and arms, now hands and occasionally face. I have incredible leg weakness, but mostly right side with right arm now added to it. I am extremely exhausted and have terrible muscle cramps. I have trouble sleeping at night with vibrations, twitching and weakness. I have had an extensive workup to include an abnormal 24 hour urine with high norepinephrine for which I was diagnosed with pheochromocytoma (didn't have), then they thought MS (MRI normal), then fibromyalgia (crock). Now, I have no follow-up, can barely leave the house and am growing weaker by the day. I am 43 and a single mother of 3 school age children. I cry almost everyday because my good intuition knows I have a debilitating disease. I live in a crappy little Upstate NY town and have only seen a NP in neurology, never the neurologist. I did have an EMG at the very beginning of this, which was normal, though the NP noted decreased muscle tone and clonus in my right leg on exam. I hate to burden the readers out there and I know you can't diagnose me, but I am so scared and alone. My friends have all disappeared and I have very little family. I have tried to make an appointment at Upstate Medical in Syracuse, about 2 hours away, but so far insurance co. is giving me a hard time. Anyway, thanks for listening.
CindyM
02-11-2007, 10:44 AM
Good morning LTR. This is a lot to go through alone. Hopefully what family you have is nearby. A lot of folks on this fourm are bothered by fasciculations but I for one have grown used to them. My Doc did prescribe Quinine for cramps, which helps a good deal. I sleep better with it, for one thing. Getting a DX for any nerve and/or muscular disease is very time consuming. You may need something for anxiety while you wait. Just a thought...Cindy
Thanks Cindy. You're right about anxiety. I do have a rx for Xanax and take that when I have to. It helps me get to sleep, but takes quite awhile. I would do anything to go back to my life 15 months ago! Leslie
Hi ltr -
Don't worry about burdening anybody here - that's why this forum exists.
Hope your not living up on the Tug Hill Plateau. How would you get yourself dug out from under a mess like that? Are your kids old enough to help out?
You might want to call the MDA (Muscular Dystrophy Assoc.) and see if they can be of any help in guiding you through the insurance maze or providing direct assistance if you need any medical equipment.
Hang in there.
Liz
Thanks so much. I will call MDA first thing tomorrow and see if they can help. I live in Elmira, NY (you probably never heard of it!). We have two maximum security prisons and no doctors! Thanks again, I really need some guidance.
My kids are 15, 14 and 9. I don't think they really understand yet. I have done everything for them in their lives and getting them to take over is going to be difficult.
Hi Leslie. I'm north of you up in Ontario and have seen where Elmira is You could also try www.alsa.org and look in the In your Community section for chapters and support groups in your area. Let us know how you make out. AL.
Hi Al,
I did look yesterday when I saw that website posted. I believe the closest is Syracuse, 2 hours away. Thats where I am trying to get an appointment, at the ALS clinic. Hopefully they will see me, but so far the ins. co isn't giving the ok. I need to make some kind of solid plan, but I just don't know how.
PS. Looking through that site I found that they are starting meetings in April in Binghamton, which is an hour away. I am happy to find that, just hope I can wait that long.
shannonme
02-12-2007, 07:38 PM
Hi Al,
I did look yesterday when I saw that website posted. I believe the closest is Syracuse, 2 hours away. Thats where I am trying to get an appointment, at the ALS clinic. Hopefully they will see me, but so far the ins. co isn't giving the ok. I need to make some kind of solid plan, but I just don't know how.
PS. Looking through that site I found that they are starting meetings in April in Binghamton, which is an hour away. I am happy to find that, just hope I can wait that long.
Hi there-
I recently found out that ALS clinics that are associated with the MDA have a grant program. They will see you for free and will pay for one therapy session. I hope this helps!
Shannon M.
Wow, that is good news. I didn't have time to find MDA in Elmira today because I had a doctors appt (rheumatologist), bloodwork, etc. I will contact them tomorrow. Thanks for the information. Leslie
I just love it when we all work together to help out one another. One side of the country to the other and one country to another.
AL.
Shannon, thank you so much. All of you, thanks. I called the MDA, they are located about an hour away, and they immediately are setting up diagnostics for me if my ins. won't cover. They have a clinic in Syracuse where I made my appt. and are working on helping me with a diagnosis. This is the closest I have come to getting help and it's thanks to the people on this forum. Like Al said, you all came together. Leslie
CindyM
02-13-2007, 01:27 PM
Glad things are working out for you, Leslie. Let us know what transpires. Cindy
shannonme
02-13-2007, 01:32 PM
Shannon, thank you so much. All of you, thanks. I called the MDA, they are located about an hour away, and they immediately are setting up diagnostics for me if my ins. won't cover. They have a clinic in Syracuse where I made my appt. and are working on helping me with a diagnosis. This is the closest I have come to getting help and it's thanks to the people on this forum. Like Al said, you all came together. Leslie
Leslie- I'm sending you my best wishes. This is a wonderful website--it's helped me tremendously over the past few months.
Jamiet
02-13-2007, 05:41 PM
Leslie, this sounds great you've got MDA support. They are right, if you can't pay the MDA will cover.
What you explain doesn't sound like ALS or MND, but more like autoimmune reaction. Hopefully i'm right.
it will take time, in the meantime, hang in there. You've got a tough job with 3 little ones. I've got a lot of respect for you, as i couldn't imagine not having someone there to help.
We'll be here for you as much as possible.
Keep us informed..
GOOD LUCK!!!!!!
You don't know how much it means to me to say you have respect for me. I am really alone and don't feel very respected. I don't think the few family members I have really understand and think everything will be fine. They still watch me work and expect a lot out of me. Sometimes I feel like collapsing and I certainly cry a lot. I'm sure many of us on this site do.
It's funny that you mention my symptoms sounding like autoimmune. The rheumatologist did some crazy bloodwork (10 tubes) and it came back positive for antiphospholipid antibody syndrome and Lupus anticoagulant (that is nothing to do with lupus. She said the medical association is changing the name). She doesn't feel, though, that it accounts for the neurological symptoms of muscle twitching and weakness. Hopefully the neurologist will know more about whether it does or not.
Again, this site has helped me so much. It sure has made me realize there is people who care about others out there. Leslie
Leslie -
I believe that some of the disrespect you feel is other people distancing themselves from something they find difficult to handle emotionally and perhaps fear that they may be drawn in to a situation that they can't or don't want to deal with. While I can understand where they may be coming from, that doesn't reduce the isolation you experience.
My mother when thru 9 months of chemo for lymphoma a few years ago and told me you'd be surprised who shows up to support you - neighbors, acquaintances who had a relative with trouble, etc. All you have to do is let people know you need help. For me that is a huge hurdle that I have to work on. Maybe you can jump me in line on that and post the results.
Liz
Hi Liz,
I guess that is a HUGE issue with me. The people who have quit calling or coming around, I have let go. I feel very awkward contacting my "friends". What do I say....where have you been? I end up feeling like I am begging for them to care. As far as my couple of family members, when I try to explain how bad this could end up or how fatigued and terrible I feel, it seems they brush the conversation off. One of them even begins telling me about their own ailments when I am just trying to prepare them for what could happen. You know what I am really hoping for....that the support meeting I found (thanks to Al), which begins in April, will put me in touch with friends. Unfortunately it is an hour away, but maybe, just maybe!
I was wondering, I am finishing my 2nd degree this semester and had intended to make better money for my family. Do you think I should attempt a job before I am too much weaker? Do you think it would help when I become disabled? I do have life ins. and plan on checking with my agent about disability coverage before I am diagnosed, but I have been diagnosed with autoimmune, so I don't know if that will fly. Sorry I got so long winded, but right now you are my only friends! Happy Valentines Day! Leslie
Hi Leslie. I used to have some friends like that. They quit calling and coming around. I still have 5 good friends that still come around. My family (7 brothers and sisters) just didn't seem to get it either. Now that I use a walker and can't do a lot of the things I used to they finally get it. I think they just didn't want to believe it. I know I didn't, and it was happening to me.
The job issue is tricky. Can you physically do it? Do you want to be away from your kids all day? If they're in school that wouldn't matter. I'm not familiar with NY disability law so would making more money now make that much difference to your payments later?
You may just find when you get to the support group that there are people from your town going there as well. There must be a few people with ALS in a town your size.
AL.
lcarlile67
02-15-2007, 06:01 AM
I know where elmira NY is -- I used to be married to one of the Letizia kids there -
- My current husband has ALS = we are in missouri now = -- You need to contact the MDA association and ask for an appointment -- You also need to contact the local chapter of ALS foundation and ask for a SOCIAL WORKER from the ALS association to come to your house !! -- A local doctor can set the appointment with the ALS CLINIC for a diagnosis. it ususally takes a few weeks to get seen - so get this going now -- APPLY TODAY FOR SOCIAL SECURITY because it takes 6 months to get approved - and you don't have to wait till you get diagnosed, you just have to be sick to apply -- APPLY TODAY for SOCIAL SECURITY DISABILITY !! -- you need to get a support system -- GO TO a good CHURCH and tell them what is going on - have them help you !! -- Sweetie, your kids will need some help from other loving adults -- because if it turns to be ALS it can progress fast - and you will have to have help NOW !!
Thanks everyone for your thoughts and responses. Al, I really don't think I am physically able to work. Yesterday I rarely left the couch.....only picked up some and made dinner. I have such an overwhelming feeling of "not well". The kids are in school, but I'm not sure how many more points I could actually earn for social security. I think it takes a good amount of time to add up.
The MDA has called me back and they are taking me on! I am just waiting for the als clinic to call me back so I can get an appt. I sure hope I can make the 2 hour drive. I really am feeling worse almost daily. I have a "to do" list and social security is on it, unfortunately now for the last two days we are in a state of emergency because of the snow. To make matters worse I think my 9-year-old has strep throat (fever, sore throat, moaning). I know I need to get to disability. I feel like I'm giving in by doing it, but I have to. As far as my church (Catholic), I'm angry that they don't even notice me not there. I don't know what to say if I call them, since I don't have a diagnosis.
The local ALS assoc. is also in Syracuse, so as far as a social worker, I probably won't be able to get that service until I get an appt. in the clinic. It's kind of a sit and wait game, I guess. Thanks again for your help. I take in every word. Leslie
mandem
02-16-2007, 01:06 AM
Leslie
All I can say is try to hang on to the good stuff as tightly as you can.
And, I am praying for better stuff in your future.
Mike S.
Thanks Mike. I really need prayers. You all have been wonderful to me. Leslie
CindyM
02-16-2007, 11:33 AM
Good morning Leslie. I can see why you feel islolated sometimes. It is hard when friends and family don't want to face the realities of your situation. I also find it overwhelming to try to learn how my muscles are this month, try to remember to compensate for that fact, learn about the disease and what we will need in the future in terms of adaptave stuff, learn about insurance issues and medications and ...oh the list just goes on.
That's why they have support groups. Don't wear yourself out any mnore than you have to. Enjoy your kids and the fact that spring is just a few weeks away. The decisions will get made, in time. Cindy
rcharlton
02-16-2007, 11:42 AM
It started l11/5/05 when I felt this electrical type shooting in my head, my heart rate quickly went up and stayed in the 150's for quite awhile. This happened many more times for several months.
Hi Leslie,
Have you looked into West Nile Virus?
A friend of mine described the exact same symptoms as above - like lighting in her head.
After 2 years of run around she was finally diagnosed with West Nile Virus - although she was mostly recovered at that point.
Richard
Hi Richard,
I will certainly check into that. I have also been getting the run around with the doctors here and nobody ever mentions anything out of the norm. I will look it up and take it with me to the doctor thursday. Thanks for caring enough to offer me the info! Leslie
