-
Looking for information
I am 48 years old and have never walked. My physical ability is equivalent to a quadriplegic without the ability to lift my arms or really move my legs. I’m contemplating on trying Spinraza. Has anyone with that much muscle weakness tried it? Did anyone find success, even minor success? To be honest I would be happy if I could just lift my arms enough to feed myself or have enough energy to make it through the day. I’m a part-time professor at two colleges and sometimes teach up to 17 credit hours a semester with as many as 150 students. I work at Stockton University and Atlantic Cape Community College in southern New Jersey near Atlantic City. I also am a major advocate for the disabled community including creating a Disability Studies Minor at Stockton University. Thanks for information anyone can offer. I’m working with Biogen and may be looking at a treatment center in Philadelphia. I’m very early in this journey. I have to get my genetic testing done first.
-
12 Replies
-
Hey Lydia, I’m 38 type 2 with fairly limited arm movement. I’ve been on Spinraza for about a year now. As far as improvements, although slow in coming for me I have made some. My upper limb assessment went from 5 points (out of 37) to 13 within this year. My arms still don’t have much lift to them, but objects seem a bit lighter, and I’m just moving more. The biggest difference for me is muscle sensation. My muscles tend to get sore if I use them a lot, and that’s new to me.
If you don’t mind my asking, do you have your spine fused? That may determine how it gets administered. Good luck on your journey! Please keep us posted.
-
I have Luki rods. If you never heard of it, it is a treatment for Scoliosis which does not involve spinal fusion, but rather I had to metal bars on each side of my spine which stop the curvature by being wired around my spine like a cage. My pelvis is fused. My muscles are sore a lot and I get spasms which is unusual for SMA.
-
Lydia – I too have Luki rods. Have you talked to your doctor about your sore muscles? I used to get spasms in my muscles and found out I was low in potassium . After eating foods high in potassium, like bananas and avocados, this helped. Have your doctor check your potassium levels, it might help.
-
Yes I take potassium and magnesium supplements plus I’ve had trigger point injections. I can’t take muscle relaxers, so the only pain relief I can get his morphine because I can’t process any other painkiller. I will get muscle “knots” which will actually feel like hard lumps under my skin.
Were you young when you had your luki rods? I was 11 and Dr. Watts was a surgeon at CHOP.
-
Yes, I was 15. (Back in 1980) My surgery was at Scottish Rite Hospital in Dallas.
-
Honestly I don’t even know what kind of rods I have, but whatever they are I call it bulletproof which is why I get Spinraza through the neural foramen with CT guidance. It’s worked slick for me. Others get theirs in fluoroscopy. Some have had ports placed, and a handful get cervical injections with experienced doctors. It’s really up to the patient and doctor.
What do you teach? As far as more energy with Spinraza I can’t say I’ve noticed a significant change, but I know several people have said they do have more stamina to get through the day.
-
My energy level is much better.
-
Hi Lydia, I’m 24 with Type II, and I started my Spinraza treatments in November 2017. I had tons of anxiety and apprehensions about it going in, but ultimately the injections went smoothly and I have experienced a boost in energy. I’m not lifting my arms or anything, but I feel better during the day and I find it easier to handle my workload. I also work full-time.
My injections are cervical, meaning I get the needle stuck through my neck. Despite how it sounds, it’s actually pretty painless. I also haven’t experienced side effects like the infamous spinal headache. I go in for my 6th injection in September. You can read more about my Spinraza story and other topics in my weekly column on SMA News Today: https://smanewstoday.com/category/embracing-my-inner-alien-a-column-by-kevin-schaefer/.
-
Hey Lydia, I am about to be 55 (Sep 2) & I have very limited mobility in my arms. I would be a very high quadriplegic in that world. I considered Spinraza earlier in the year but decided I really didn’t want to chance the side effects. My pulmonologist put me on oral albuterol (liquid) just this past beginning of July. A friend of mine takes it & she has had a big increase in energy and stamina. Since I’ve been taking it, I’ve noticed quite a bit more energy (I promise my sleeping habits have stayed the same) and feel more peppy. I’m also on extended-release morphine with hydrocodone for breakthrough due to the severe pain in my hips, legs, & sometimes back. Even with all these onboard, the albuterol seems to be keeping me going & doing all the things I love to do! Since I just started the morphine, I’m not sure if it’s that, the albuterol, or a combination of both but my pain level has dropped dramatically! I can actually sit all day if necessary without so much as a peep from any part of my lower extremities. I don’t really care which one is helping it, I’m just glad it is!
Good luck with your decision on the injections!
-
DeAnn, I teach Disability Studies at Stockton University and English at a local community college. The disability studies is a minor that I created and is the first in New Jersey.
Kelly, I tried albuterol through my nebulizer and it makes my heart beat way too fast. I see Dr. Bach the same as here in New Jersey for treating SMA patients with noninvasive ventilation. I have found that increased my energy level slightly. I can’t do hydrocodone, but Lyrica helps with the muscle spasms. I’ve also had quite a bit of success with trigger point injections, but only with non-steroids.
-
Lydia,
That’s cool that Dr. Bach treats you! Albuterol liquid med is different from the nebulizer albuterol. Not sure exactly how it’s different other than you take it either in your peg tube or by mouth.
That’s a bummer you can’t take hydrocodone because it helps me a lot – especially combined as a breakthrough med with morphine as the primary pain med. I’m sure people think I’m an addict or something but I don’t care because I hurt horribly without those meds.
Have you gotten any answers to your Spinraza question yet? I’m sorry I don’t know anyone personally who has gotten it. Have you joined the Facebook group Living with M.D.? It’s a private group that you have to request to get in but, as long as you have M.D., they will let you in. There are tons of people in there from all over the place who have had the injections – some for even over a year!
-
Hey Lydia – I just wanted to add that I started receiving Spinraza about 3 months ago and I had it done in Philly at Penn. The doctor who administered it was Bryan Pukenas and supposedly he’s one of the best in the world. He’s a really nice guy. I too have a complete fusion (ie luki rods from my neck to butt) and under the guidance of the CT machine mentioned by DeAnn, he was able to find an available opening in the spinal cord for the injection with little trouble. As far as the effects of the treatment, I’ve noticed a significant decrease in my fatiguability and an overall increase in my energy. However, I do have type III, but the treatment essentially increases your SMN protein levels, so at worst, starting treatment ought to at least halt any further progression of SMA (which is huge because I need to keep every last bit of strength I have) and at best you may get stronger and have more energy! Hope this helps ..
Log in to reply.