MND and Radiation

[Uptown]

I was recently diagnosed with Post Radiation Lower Motor Neuron Disorder that was brought on by large doses of radiation to my neck when I was treated for Stage IV Throat Cancer in 2003. The fasiculations began months after treatment and have progressed to severe pain, fibrosis of the scm and loss of range of motion in the left side. It has now progressed to fasiculations from head to toe and moved to the left side with significant muscle deterioration, pain, weakness, cramping, coughing, choking and difficulty breathing. I am sorry for each of you as any motor neuron disease is pretty rough.

Since I don't truly have ALS, I am having difficulty in treating the other issues. I was maintaining some muscles through toning and stretching but am having difficulty in stretching as if the tendons have enlarged and tightened up and the muscles have shrunk and pretty much fibrosis throughout. Muscle groups go away without regular excercise and never return but light toning slows down the progression.

Anyway, I am looking for an Executive Cervical Collar or perhaps a Headmaster Cervical Collar. I am not working and have insurance and medicare but have not found anywhere that can help me get one other than a neurologist at an ALS clinic writing a script. (He reminds me often I am not under his care because there is nothing that can be done. That;s another story.) I am becoming a bucket of bones but have some good days interspersed with tougher days.

Any idea where to find PT, OT, etc.? I feel like I am not helpless but I keep running into dead ends. I live in the Dallas area if that helps.

Thanks.

 

[Uptown]

After reading all the whiners posting with fears of ALS I understand why nobody replied to my post. Just to clarify, I have now had two EMG's, standard blood work to rule out Kennedy's syndrome, blood work to check CK (CPK) CREATINE KINASE (slightly elevated at 195),
evaluation for cervical dystonia and brain MRI's, MRA's (for checking carotid arteries as standard protocol after head and neck radiation). I have received two diagnoses of Motor Neuron Disease, specifically PRLMNS which only affects lower motor neurons. I am not asking for any diagnostic input, not asking for direction to websites for more information, not asking for any what-ifs. I apologize if anyone is offended by my questions but I fell through the cracks as just "Motor Neuron Disease, other-780.79". My step-sister died about 6 years ago from ALS so I have seen it from the outside looking in. My condition is often misdiagnosed as ALS but often stops at total paralysis from the neck down. I am not asking for any sympathy or inviting anyone to a pity party.

I have lost 70 lbs now and significantly reduced my muscle mass through visible deterioration/atrophy. I can barely lift my arms above 45 degrees and can only lift a few pounds provided I keep the arms close to the body. I fall often from not being able to lift my left foot and stumble on my toes hitting the floor/ground. I have lost muscles in my hands and feet as well. I have found things that work and continue to personally address the other issues without cloggin up the ALS clinics because I think those with ALS deserve that space.

All of you are the true warriors in life, caregivers and patients alike! I just want to find the things that provide me with some level of comfort in life and am having a little difficulty finding these things and because of a diagnosis of MND, this seemed like a possibility. Best wishes for all of you. My mantra, "If God can bring you to it...He will bring you through it". Today I pray for all of you to have the best day you possibly can and above all, take the time to MAKE THE MEMORIES that will sustain you and your families.

God Bless.

 

[Al]

Hi Uptown. Welcome but sorry you had to come looking for us. Hope we can help. My GP writes scripts for all my aids etc. My community case worker tells him what I need and he writes it. Do you have any care from any organisations? ALSA/MDA don't just do ALS.

AL.

 

[abbas child]

I've just had to get a cervical collar ordered this week, Uptown. I'd read about the Headmaster and expected that to be what the PT advised. It helps only with dropping toward the chest, and not at all with sideways dropping (leaning toward the shoulders). As a result, a script was written for an "Aspen" Collar, which is much more restrictive, but should allow eating and drinking. Anyway, I wanted to let you know in case, like me, you didn't realize that the Headmaster (or the Executive) don't help the lateral problem. We did not take the script to a store but used the online store that sells Kindles... and ordered it.

 

[Alyoop]

Dear Uptown. I am sure you are not being ignored. Welcome to the forum . I think it is just more that noone had the anser maybe. I dont live in USA so I am no help at all.

You are certainly not a whiner, and people reply to them anyway. It will just be an oversight. It sounds like you have been through a lot, like most people here. My daughter is a Radiation therapist and I did some radiation clinical trials. I know how life saving and also how dangerous it can be having to have radiation therapy. One of my studies was a head and neck study,I cant believe how much ulceration and pain the patients went through. They all ended up having PEG tubes during the treatment. I thought at the time that it one of the worst cancers to get treated for. I am full of admiration for you, and it seems unfair that you are now having this horrible side effect.

On that note, I am sorry that I am absolutely no help at all, but you are welcome to vent here, you certainly deserve it.

Aly

 

[Phil M]

I used to repair radioactive lab equipment for a year or two many years ago. Just sayin. Hope your not feeling ignored now. ;^)

 

[Uptown]

Thanks for the replies. My current issue is that the fibrosis in my neck muscles and the lower motor neuron denegrations causes my neck to pull forward and my shoulders to roll towards the front. The muscles in the back of the neck are just about gone so the head wants to fall forward. The executive collar/headmaster has some support for the back of the neck. I have trouble moving side to side but because of the fibrosis, it is not impossible, just painful and minimal range of motion. The gaps in my cervical disks is such that if I don't prop the head up, the disks will just give way at some point.

Ironically, I have scripts but just can't find where to go to get them filled. I found a couple of on-line stores but I just don't know how to size correctly. I know I am at this place in life because I asked for the treatment to save my life. No complaints about that because the last 7 years have been some of the best for sure. I used the PEG for 2 years and now am considering another one because of the aspiration when eating and drinking.

Best wishes for all. Thank you Phil for just sayin! :|

 

[abbas child]

Uptown, I don't know if this would help you, but our insurance company was able to tell us which Durable Medical Equipment stores (or a really good pharmacy which covers things like some appliances--rollators, toilet lifts, etc.) in our area are within their network. We learned of a different store in our area from the insurance company just last week.

Regarding measuring, my husband went to the manufacturer's web page and found the measuring device there--just had to use the printer and get the thing printed in order to measure me. I've looked (I told you this yesterday) at the headmaster and realize it comes in several sizes. I'm not sure their site has a way to measure right there. Now, regarding what we ordered, who knows if this will actually fit. It's coming from a major handicap store, and hopefully can be exchanged if we're off base. I think there was a real desire on his part not to give another store an exorbitant fee for them to order it combined with how exhausting it is for me to go out. I'll let you know how it works out.

I hope you can get what you need very soon. I'm very sorry you have this to deal with following cancer and radiation.

Ann