Tests and other stuff

[Moonmark]

Hi, everyone,

those of you who have read my earlier posts will be familiar with my symptoms and the testing I am undergoing to unearth the cause. As I mentioned, I am having some additional tests over the next few weeks for the possibility of MS, although the neuro noted I do not have sensory symptoms and he said the few "spots" on my brain MRI do not have the typical shape of MS lesions. I am having an EMG on arms and legs on June 30; he said he will decide during that test whether to also do an EMG on the tongue area. I am on a waiting list for an earlier appointment.

In the meantime, is there anything you might recommend to help with muscle tightness and weakness? The stiffness in neck and shoulders that I have had for awhile is getting worse and the twitching has now started in my left shoulder, which is a first. When I lift my arms, I also feel a lot of strain in the shoulder joint/muscles and there are crunching, popping, and snapping sounds. Yesterday I carried a pot of tea with my left arm (the weaker one) and it felt like I was lugging a 50-pound weight.

did anyone ever receive any relief from seeing a chiropractor? what about massage? yoga? any other recommendations. as you know, I am not sure if this is MND, but I am wondering what people did to maintain some flexibility and mobility early in their disease process, regardless.

also, I am wondering, when the neuro does the EMG and if he finds evidence of a neuromuscular disease, is that it for testing? Is a diagnosis issued at that point, or is more testing ordered? if so what would that be?

thanks again for your time,

Sandra

 

[BethU]

massage feels great.

Kundalini yoga is wonderful, especially since it emphasizes breathing control and meditation. However, in the breathing kriyas, you do a lot of diaphragm work, and I'm not sure if that is good or bad for ALS.

Pilates is also terrific for flexibility and range of motion as well as some strength building, but it does work the muscles. Make sure you get an East-Coast (traditional) Pilates instructor, rather than a West-Coast, although the WC is a lot more fun. Since it is a "health-oriented" practice (rather than fitness-oriented) your instructor should be very responsive to your needs.

Tai Chi is also a great meditative practice that gives you a little work out and soothes your brain. But it's more physical effort than it looks. But a splendid way to unkink your mind.

 

[Moonmark]

Thanks

Beth, thank you for the response. I can see why you are listed as a very helpful member! I just wanted to say, in general, that I really appreciate everyone who has responded to my concerns and questions, particularly as I do not have a diagnosis. I think it is amazing that all of you, who are dealing with so much yourselves, take the time to respond to all the people who are facing unnamed, but scary, health problems.

anyway, Beth, I am wondering if you are still able to do yoga or tai chi or any of these things now? I used to do a lot of yoga and was quite fit. when I returned to yoga this winter/early spring, that was actually where I started to notice some odd difficulties. I had trouble maintaining my arms in downward dog--and I felt much, much weaker than I ever had before in my life. this preceded any of the twitching that I am now experiencing.

as this "thing" progresses into my legs (mostly the right quad right now), could I do some of these positions which require a lot of strength? Warrior, squats, stuff like that. would I be doing any damage? I can barely keep up with my toddler daughter-- running after her is becoming more and more difficult. I can't do a full-out run-- I sort of shuffle--I feel really bad because she always says, "run faster, mama!" My legs, particularly the right one, has become sort of rigid-- or I am doing that unconsciously as a compensation for the weak quad-- not sure. Lately, I feel much better when I am sitting down.

any more thoughts? also, do you know what additional tests they might run after the EMG or is that pretty much the gold standard for diagnosing neuromuscular stuff?

Sandra

 

[BethU]

Sandra ... I gave up yoga classes a couple of years ago (before diagnosed) because I began to stiffen up (old age ). I still do some at home, particularly before bed, but they are relaxing postures, mostly breathing and stretching.

I understand that until ALS reaches a particular part of your body, it is OK to do normal exercise with that area. Once you have weakness, only do range-of-motion.

Pilates is quite wonderful for your overall body, and really gives you a nice, healthy muscle toning effect. I kept doing it until just a couple months ago. My instructor tailored the excercises to the progression of my ALS ... my legs were still strong, so we used normal spring weights for leg exercises, I continued to do "core" exercises, and we did range-of-motion only on my arms, since arm weakness was becoming apparent. We also cut back the length of the sessions to half hour from a full hour.

I knew it was time to quit when I began having balancing problems, and even range of motion movements were exhausting. But, with my instructor's approval, I bought a Pilates "half-barrel" to do chest-expansion exercises (they feel soooooooooo good for my shoulders and neck as I am becoming quite slumped over) and I also use the stretchy band for leg stretches.

About the EMG: It is not a definitive test for ALS, but it adds to the doctor's picture of what is going on. He/she may want to do more tests after it or not. Dx ALS takes time. Basically they have to rule out a gazillion other things it might be. But it should give the doctor a lot of important information.

(About the "helpful member." You get that when you have posted an excessive number of messages. :lol: It's a clear sign that you have too much time on your hands.)

Good luck with the EMG.

 

[rose]

Sandra,

What further tests are done would depend on what your clinical exams have shown so far.

From the perspective of ruling out ALS, you could also possibly need to have a lumbar puncture, and/or muscle biopsy. A 24 hour collection of urine for heavy metals, blood labs to rule out or pinpoint autoimmune responses or conditions.

It can be a lengthy process. It really helps to not try to "steer" your doctors to check for diseases you fear, but rather let them investigate.

Personally, I never had a muscle biopsy or the spinal tap, as my symptoms were not ones that could be similar to other conditions that these tests would help illuminate. It takes patience on your part, and also trusting that your doctors have the wisdom to know which areas to look at first for answers.

I'd take heart that so far, the neurologist, irregardless of his demeanor to you, did not seem to think that a MND was the source of your problems. This is something you should not discount, it is very much in your favor. Even though you did not feel he was really listening to what you had to say, believe me he was taking in a lot of information from you, from the moment he introduced himself, until when you left the exam room.

.... In addition to perhaps what you're experiencing being the results of your body's response to a virus (autoimmune trigger) , or metabolic causes, or MG, MS, there are so many myopathies ,neuropathies, ones that never make it to google searches on the internet. Many of which either are treatable or curable, or at least are not debilitating.

If I were you, I'd try to just listen to my body, if something in yoga is not comfortable, just don't do it. Maybe at your next doctor appointment you could ask for a prescription for physical therapy to address your range of motion concerns.

Try to keep your focus on the fact that the things that mattered most before you began having problems, are still the things that matter most now. What ever it is that is wrong with you, its you that have it, don't let it, (especially the fear of the unknown) have you.

Keeping up with a toddler is a challenge at any age, but the memories are so worth it.

 

[Zaphoon]

Okay, from personal experience, it is not wise to see a chiropracter when you have muscle stiffnes in your neck and shoulders. That is to say, if your chiropracter is one of those who do manual manipulations (you know, the "head ripping" kind).

I went through a period where my neck and shoulder muscles were as stiff as a baseball bat. The guy went to adjust my neck when it was stiff and almost ripped my head off. Needless to say, I yelled at him in as mild a manner as was possible at the moment.

I have a daughter that is a massage therapist and I would highly recommend her over the chiropracter.

Zaphoon