Frustrated: More questions than answers

[indigosd]

John,
My Husband had a whole body EMG and Nerve Conduction Studies [tongue included] -took 2 hours and said it HURT LIKE H--L and for many days after the EMG! He said NEVER again will he be zapped and used for a pincushion! I second that emotion. I sat beside him for the entire testing and just wanted to cry.

[caroleflann]

Hi John,
Yes, my son, Daniel, has had problems with sweating, sometimes it makes his whole shirt wet in less than a minute, but he does not associate a specific trigger. I am convinced that Lantus and Humalog caused my son's leg / arm weakness, joint pain, and other symptoms. The book "Insulin - A Voice for Choice ", by Dr. Arthur Teuscher, explains the problem - link: http://www.online.karger.com/ProdukteDB/produkte.asp?Aktion=showproducts&searchW hat=books&ProduktNr=233657 .

Thanks for your updates,
Carol

Originally Posted by Naeco

That's interesting, Carol. I started taking Lantus about 6 or 7 years ago but it's hard to remember if that was before any of these symptoms started. I'll have to look into that some more... thanks for the heads up.

Just out of curiousity, does your son ever find that he's sweating a lot while eating? It started happening all the time with me shortly after taking my insulin before eating and I check my blood sugar and everything is fine but I start sweating like crazy. It happens right after taking the Humalog insulin for each meal. I started wondering if maybe the Humalog might be causing some of these other symptoms that I'm having so it's interesting to hear that certain insulins might cause this type of thing.

Best wishes to you and your family. I have my first visit to the Mayo Clinic this afternoon and will let you know if I find out anything more.

-John

[Naeco]

Hey Guys,

Just wanted to post an update about the tests that I've been going through since my EMG came back clean. I've been having some similar symptoms with other people on the forum so hopefully this might help them in some way with their own struggles. I was supposed to havew my follow-up with my original doctor that scheduled that tests but instead they decided to give me a full round of additional tests before I see him again. I went for a neuro-psych test yeasterday and had lots of difficulty with the few motor tests that were done. I was getting lots of muscle cramps in my hands during the cognitive tests where you need to draw shapes and stuff like that and by the time they got around to the motor test (clicking a counter with my index finger) my hand was stiff and tired that I was actually doing just as well with my left hand on that test (natural righty) and I would get short of breath so much that we needed to take breaks each time we tried the test again. I also started getting these things the doctor called a "jolt" where it was like an involuntary movement in my arms and legs. All my muscles just felt really stiff and tense. They didn't really have any answers for what was happening but they told me to mention it to the neurologist when I see him in a couple weeks. They were also making notes on when the muscle cramps started in my hands and stuff like that.

I also had an MRI on my head and spine yesterday and have pending appointments with a Neurologist, Audiologist (for balance issues) and an Endocrinologist. I guess they're trying to rule out lots of other things still.

[SandraD]

Hi John--

just wondering if the doctors checked you for Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). This disease often coexists with diabetes.


here is a link you might want to check out: Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) Information Page: National Institute of Neurological Disorders and Stroke (NINDS).

Sandra

[Naeco]

Hey Sandra, I'm not sure if they tested for CIDP... they ordered a BUNCH of blood tests on my first day and it may have been that but I haven't rcvd and of the results yet. I was really hoping to talk to the doctor last week to find out stuff like that but I guess they want to know more before they talk to me. I wish the testing didn't take so long. I really hope they don't need to do a second EMG because for some reason that test did a number on me. It's been over a week now and my ankle still feels just as sore as it did right after the test. Being awake for the endoscope was a pretty gnarly test but I would still rather have that 10 times over before considering the EMG again.

[halfin]

I had an EMG in June with my local neurologist that showed some bad readings, and then one in August at the UCLA neuromuscular lab by the ALS specialist, which triggered my diagnosis. The local EMG didn't hurt at all. The nerve conduction test was very uncomfortable, all the shocks, but I hardly felt the EMG. I didn't even realize needles were going in at first, I thought he was just touching my skin.

But when I went down to UCLA for the 2nd EMG, that one really killed! Every time he poked me it hurt. Then he would wiggle the needle around, I guess probing different parts of the muscle. It was really painful, and a complete surprise because I thought it would be nothing.

So when I met again with my local neurologist, I mentioned this difference. He explained that UCLA was probably using thicker needles. He said he orders the finest needles he can get - they're like acupuncture needles. With those thin needles, there's no pain during the EMG. With the thick ones, it's another matter.

Maybe that explains why different people have different reactions to the EMG and how uncomfortable it can be.

[crystalkk]

Yes, the size of the needle does make a big difference. I am very petite and one time the technician that did the nvc suggested to the dr to use a pediatric needle, that was very nice of her. I also had emg's with thick needles that hurt like h***. But, I also wonder if they get a better reading with the thicker needle.

[Naeco]

THanks Hal, that makes a lot of sense now! I remember looking at the needle when he put it back in the holster, and if that sucker was any thicker, it could have been used as a hanger at a discount Dry Cleaner. Seriously though, I'm a diabetic so I take a minimum of 4 shots a day and I'm very acclimated to needles but the stuff they used in that EMG was not cool. The gauge they used was bad enough but then when they started wiffling that sucker around like you were saying, it actually made me take a swat at the doctor doing the test. He said he was only going to test one leg and stop there if he didn't find anything abnormal that after the swat it pretty much sealed the deal that my test was over. I hope they're more kind with a smaller needle if I ever need to take that test again.

Thanks for the info!

-John

[Naeco]

Hi Carol,

I spoke with someone at the Mayo Clinic today that had some good info about the sweating while eating stuff that we talked about . They said it a common symptom of Gastroparesis (Gastric Neuropathy) and they pretty certain that I have it, although it requires a diagnosis of exclusion - unfortunately there's no simgle test for this disorder either. You may want to mention it to his doctor.

Good Luck!

-John

Originally Posted by caroleflann

Hi John,
Yes, my son, Daniel, has had problems with sweating, sometimes it makes his whole shirt wet in less than a minute, but he does not associate a specific trigger. I am convinced that Lantus and Humalog caused my son's leg / arm weakness, joint pain, and other symptoms. The book "Insulin - A Voice for Choice ", by Dr. Arthur Teuscher, explains the problem - link: Insulin - A Voice for Choice .

Thanks for your updates,
Carol

[SandraD]

Hi John-- well, it's great (sort of) that they found something-- gastroparesis. I sure hope it's treatable-- do they think it's a symptom of your diabetes, or something else? have they given you any explanation for the muscle weakness, fatigue, etc.?

I think someone else on the forum has gastroparesis-- maybe Rose?

anyway, hope I am not being too nosey... I am just curious to know what is happening with other people who are having lots of problems, like me, but undiagnosed.

Hope all is well (otherwise),

Sandra

[Naeco]

Hi Sandra,

So far, they've only given me a bunch of literature about gastroparesis but they haven't metioned whether they believe it's related to my Diabetes or a possible neuromuscular disorder. From what I've read about it, it's pretty common for people with uncontrolled diabetes but my blood sugars have always been very well controlled so I'm very doubtfull that it was caused by high blood sugars. Another explanation that I've read is that it's occasionally caused by a surgery in the GI tract so that seems logical sense it all seemed to start around the time my appendix was removed. It's hard to hope for something that could have been avoided but it's better than the alternative, which would be that it's related to Parkinson's, MS or some other type of Neuromuscular disorder.

My doctors haven't told me enough about it to know if it's the cause of all my other symptoms but I doubt it from the little bit of info that I've been able to dig up on my own. I'll let you know if they find this was the root cause of all my other illnesses.

Take care!

-John

[Naeco]

Does anyone else get this involuntary jerk in there arms and legs (keep it clean guys). I'm noticing it more and more recently and it's starting to affect things that require precise movements. I think one of my doctors called this a "jolt" during one of my appts. I have an appt with a neuro at the Mayo next week but this is really starting to bug me. I have a desk job so it's starting to get really frustrating to type and use the mouse and stuff like that. Anyone else notice symptoms like this?

[awieleba]

yes, I get that. I think it is a myoclonic jerk? My arm will just jerk, slightly. Or sometimes my leg. I had it alot in the start last year. I think it has lessened for me. Or I could be use to it, I have gotten use to alot. It was worse last year when I was extremely stressed about all this and seeing the doctors. Thankfully, for me it has never been often enough or severe enough to interfere with anything I do. Mine is more at rest my arm will just jerk a little, but fast and only once.

Take care.

april

[katmomma]

I get this as well. Its mostly wehen resting. I get it in my legs and sometimes arms. The last few weeks I've noticed some in my stomach when falling asleep. Like if I'm laying on my back my stomach just jolts out really quick. I didn't know you could get them there. Is this common with als? A few years ago when I went through a similar situation I'm in now, but not nearly as bad, I used to get this a lot. I remember we had a party at our house and I was sitting down with a glass of wine in my hand and all the sudden my wrist jerked-luckily the wine didn't spill!

[crystalkk]

I get it in my left wrist when I lay down a night, it pulls inward real fast.