Is there a way to self-test clonus

[JasonGoodMeasure]

Dear Rose,

Thank you for your thoughtful message. I’m sorry that you have had to come to this site because it likely means there is something going on with your health or the health of someone you love.

In your message you said the following, “I'm assuming that was because you'd asked about ALS, as very few doctors will even bring up ALS...” I wish you were right about that but it was my Dr. who brought it up and narrowed it down to MS or ALS. The reason I’m perusing information about ALS is quite simple. First of all, my Dr. brought it up and narrowed it down. Secondly, in my church there is a lady who was diagnosed with MS about the same time that I was. We’ve shared experiences and symptoms at length and she says that what I am struggling with does not sound like what she struggles with. In addition to that, my wife’s uncle is dieing of ALS. I’ve been talking with his wife about things for a while now and she, with tears in her eyes says that what I am struggling with does indeed sound like what my wife’s uncle has struggled with. So there is reason for me to be here gleaning from your experiences and encouragement.

You also made the statement, “those that you’ve taken issue with here…” I haven’t really taken issue with anyone as far as I know, unless asking an irritating question or shutting out negative vibes qualifies as taking issue. I asked the question, is there a way to self-test for clonus? This is the response I received from one of the users you mentioned, “Simply put . . . no. Leave that to your neuro along with your diagnosis. There is a reason they are physicians and you're not. You can't google your way into an M.D. degree and that is what it appears you're trying to do.

“There is a reason they are physicians and you’re not” This remark is at best condescending and I would argue insulting and absolutely useless for any other purpose other than to put a person down.

“You can’t google your way into an M.D. degree and that is what it appears you’re trying to do.”

This remark is at best judgmental and I would argue insulting also. I did not come here to be cut low, judged, or insulted. This remake has been repeated by wright to other users and if anything, may imply that this is how he gains all his “knowledge”. It’s not helpful in anyway, the remarks that is. What you have said Miss Rose is helpful and kind and I appreciate your insight.

 

[fmarino]

Wright explains things better than any neurologist does and takes the time to do it. He doesn't have to be here and is appreciated by an awful lot of people. People specifically ask him for his advice and there have been threads devoted to him that thank him for all he does for us on here. He has a Master's degree and a Ph.D. and teaches in a medical school. You might be a bit skeptical about that, but I know it's true because I have talked to him on the phone and his number came from the medical school of a well established university. Even if I hadn't talked to him, it's obvious he knows his stuff. I guess he can sound a bit arrogant at times (I probably would be arrogant too if I was as smart as he is) but most of the times when he is, it's because it frustrates him to see people on here search the internet for a diagnosis when they aren't close to being able to understand what they are reading (I include myself in that). He has said that on here before and he told me when I talked to him. My advice would be not to burn a bridge to him because he can help you. He has helped me and many others on here. That's all I have to say.

 

[suzannj]

Robert -
I just had to chime in here - - - you are TOO FUNNY! Maybe because I saw myself allllll over your post I actually "LOL'd" when you said "....and whatever poor friends or family we can corner". Yes, my poor husband has run many things over the bottom of my feet, and not in a fun way! LOL

Jason: I think a good comparison in attempting to self-test is like trying to tickle yourself. It kind-of just doesn't work. It is SO HARD to wait for doctor's appointments, then test results, and then trying to absorb (believe?) whatever it is they have said. Wright told me it didn't sound like I have ALS (ummmm, twice - maybe three times?), my GP said the same, and then an ALS Specialist said the same. I however did NOT believe it. They now are pretty sure I have something called "MMN" or multi-focal motor neuropathy. We'll see. The whole process is a form of torture. I have said that people come on this portion of the Forum are asking, "Is this ALS? Do I have ALS?", but what is really happening is they're / we're screaming, "PLEASE tell me I don't have ALS!". It's all very difficult. I hope you have a good day today.....I know I'm trying!

Take care,
Suzann

 

[CindyM]

Jason- I am glad you found the feature that allows you to ignore posts. We all get on each other's nerves from time to time, LOL. I think it comes from not being able to see each other's faces or hear the tone of voice somebody is using.

Whenever we have a long discussion about whether or not a poster meant insult I always remind folks of the "ignore" feature. That is why I am glad you pointed it out. Thank you for that.

Also: my doctors first started talking to me about ALS before I even knew what it was, too. But that was a couple of years ago and I'm still hanging in. Still no DX, either. Hopefully your answers will come sooner! Regards, Cindy

 

[lydia]

Jason,
I just wanted to comment on your doctor bringing up ALS so soon. My neuro did so as well (to my GP in a report, not to me directly), after 15 minutes in her office. When you hear here and elsewhere that doctors are loathe to do that...and won't even go there until they have explored other possibilities...but then early in the diagnosis process your doctor actually says it aloud (or puts it in writing, in my case) what is one to think?! That is really scary! I know I thought (pardon my french) WTF? Was there something so dramatic about my situation or your situation that screamed MND that our neuros decided to go there so soon? Or are our neuros just being careless, irrresponsible, insensitive, etc....? How do we know? Which is it? We get mixed messages....to trust our doctors, to have faith in their education & experience...but if that is true, then it follows we have a right to be seriously disturbed by their rapid and scary appraisal of the possible causes of our current symptoms...does that make sense?

I am grateful that I have been reading this forum for a while, and that I had read here enough to know that while I have many symptoms on the "ALS symptom list" that there are many other possibilities that can explain them. So while it was quite a shock to have a neuro skip all that and just cut to the (MND/PD) chase, I have since decided for a variety of reasons that I have described elsewhere on the forum NOT to put too much stock in her care of me and to start over with a new neuro. I don't know what to make of why your neuro would bring that possibility up so soon (careless? irresponsible? insensitive? stupid? perceptive? experienced? who knows?) , but wanted to let you know that I can at least relate to the scare that comes when a neuro raises the MND possibility so soon in the diagnosis process.

Lydia
(PS: to my neuro's credit, she did not say it to me in office. She put in report to GP which I later read)

 

[rose]

Jason, I just read your response to my response, I'm sorry that ANY doctor would bring up MND on a first visit, and have to feel it is irresponsible and insensitive. Plus, it would certainly influence how you began to view your symptoms. Prepare yourself (maybe reprogram is a better word) to be receptive to what you're told when you do make it to Hopkins. Words cannot fully express how impressed I've been with that institution. Not only has anyone that had contact with me been friendly and compassionate, but they're super efficient, once you're in "the system" they take care of you. They're tops in neurology, and I believe they're also rated #1 in rheumatology if it turns out this is more the direction you will need to go. Its a huge plus for you that you live within the vicinity. take care, :smile:

 

[JasonGoodMeasure]

fmarino
“they aren't close to being able to understand what they are reading (I include myself in that).”

You are altogether to hard on yourself. I’m sure you can understand much more than some would like you to think you can.

 

[JasonGoodMeasure]

CindyM,

Thanks for your post. I'm going to send you a private message.

 

[JasonGoodMeasure]

Dear Lydia,

Your post is brilliant. Somehow you were able to see a question for what it is and share your experience without preaching or putting anyone down. It is most appreciated.

I tend to see Drs. As fallible like everyone else. They are indeed subject to the same human error, laziness, arrogance, distractibility and potential for greediness. I also believe that many Drs are out there who when they make any of these mistakes, well they learn from them and don’t repeat. When you by chance end up with one who is guided by any of those negative things in the above list, that’s when you really benefit from the inquisitiveness that leads us to forums like this.

 

[JasonGoodMeasure]

Dear Rose,

I’m sorry for not being clear. My Dr. did not bring ALS up on the first visit but it was actually about the fourth (and last) time I’ve seen her this year. It was also after many tests and many other Drs.

I’ve heard some great things about Johns Hopkins. It’s amazing that you mention, “once you get into the system, they really take care of you,” because I’ve actually heard that. About the system: When I first made a call to them I was told that I couldn’t even make an appointment without a diagnosis. My diagnosis is for MS, but if it is something else I do hope that they will do as you say.

 

[fmarino]

Sorry Jason I'm smart enough to realize that medicine (especially neurology) and all that goes with it isn't something lay people like us can figure out over the internet. I know my neuro gets very aggravated when people come to him thinking they know as much as him just because they can surf the internet. I'm sure not going to google "rocket ship" and think I can build one. I'm not sure why you think or anyone thinks they can do the same with medicine. Doctors go to school for a very long and have a lot of training, so to think that your friend can check you for clonus is just plain naive. I know your desperate for answers but all it's going to do is make you worry more because I'm sure there are so many diseases out there that the internet doesn't talk about and all you will be reading about is ALS. Sorry buddy, but my loyalties are with Wright. If that means you are going to block me too, then so be it. Good luck with your diagnosis. You sure did burn a valuable bridge and I'm not talking about me. I guess apologies just aren't good enough for some people. Oh well.

 

[JasonGoodMeasure]

I'm not sure I understand what you mean by your last sentance.

 

[Laurie H.]

I am so new to this that I do not even know if I am asking my question in the right place. I am a 46 year old. Neurological testing shows that I have hyperreflexia, sustained clonus in both ankles, as well as a slightly upward moving big left toe. I have tingling throughout my body, but mostly in my feet and hands. I also have tiny muscle twitches and then larger muscle "quivers" throughout my body (legs, torso, buttocks, feet, etc.). My neurologist has assured me that I do not have MS but has given me no information about possible causes of my symptoms. About 9 months ago, I became extremely ill and was bedridden for about 2 weeks. At this same time, I had hives and angioedema; allergy testing revealed that they were autoimmune in origin. While I was sick, I had all of the above symptoms and also had trouble breathing and swallowing. After 9 months, some of the original symptoms have not yet gone away, though they seem to change in intensity. Has anyone else experienced these symptoms? I appreciate any feedback that anyone can give me.

 

[Zaphoon]

I might as well add my 2 cents in. You cannot effectively test yourself for Babinksi sign in the plantar reflex. There is more to watch for other than up or down-going does. There is also a triple flexion response that is watched for as well.

What? you say. If you don't know what a triple flexion response is, there is no need to look it up (it takes a keen eye to observe, anyway).

I'm not about to try to perform dentistry, neurology, psychology, radiology or chemotherapy on myself. I promise!

Zaphoon

 

[BarryG]

I'm not about to try to perform dentistry, neurology, psychology, radiology or chemotherapy on myself. I promise!

As long as you promise that you won't practice proctology on yourself :shock: