New symptoms

[CB1977]

Hello- I have not posted in a while. Over a year ago my symptoms began. At this point I have been through the ringer as far as doctors, neurologists, ect. I have a question in regards to a new symptom-

I have felt like my breathing is labored when I lay down on my back at the end of the day or after I eat large meals. It is annoying but I have talked myself out of ALS being an option so I have just ignore it. Yesterday I had some serious breathing issues come on unprovoked. I had an episode where I felt like I couldnt breath out all the way and it was heavy to take a deep breath. I got light headed and my hands started to tingle like they were going numb. I thought I was going to pass out and had to lay down for 30-40 minutes. Is this anything that sounds ALS related? I dont have noticable muscle weakness anywhere on my body but I do have muscle fatigue all the time which gets worse as teh day progresses. How can a neurologist tell if your chest wall or diaphram is getting weak? Can they do a MRI,. X-ray. or EMG on this area? DOes anyone have any ideas, I am out of ideas on where to turn next to search for relief.

I have had 2 clean EMG's over the last 6 months that were 6 months apart. The muscle twitching I have (which is only one of many of my symptoms) started in my lower left abdomen and has since spread over 7 months to my whole body.

Can MG affect breathing or can neuropathies do this? If so, does this point to one certain non-ALS issue? Thank-You for your input, hope all is well.

CB

 

[BethU]

Yes, MG can affect breathing. If someone dies of MG, it is usually from respiratory failure, so breathing and lung capacity are things people with MG monitor carefully. You'll need Wright or one of our nurses to discuss the tingling and almost passing out bit. But this is NOT an ALS-issue from anything I've ever heard.

The fact that your breathing is worse when you lie down worries me, as do these other symptoms. If I were you 1) I'd be freezing my butt off, because I'd be in Columbus, Ohio, and 2) I'd check with my primary care physician about this. There are many possibilities, but I'm pretty sure that ALS is not one of them.

I don't think this episode should be ignored. You're going to the Cleveland Clinic soon, aren't you, or have you been?

Take care ... I hope it's nothing worrisome.

 

[planningguy]

CB1977,

With the caveat I am not a doctor, my knwoledge is limited, and cannot diagnosed you: Yes - MG can affect breathing. In fact in very severe cases a MG "crisis" or respitory failure can occur. You should discuss respitory problems with your doctor, especially if you are concerned about blacking out. I should also note that a severe anxiety attack can also cause breathing issues.

Take care,

Robert

 

[planningguy]

Beth - ya beat me... which is good because you know a lot more about MG than I do

Robert

 

[BethU]

Robert ... I was lurking in the bushes waiting to pounce. And you really know your stuff on MG and a lot of other issues. Me, I just google everything.

 

[CB1977]

Robert and Beth- Thank-you for the reply

Beth- you are correct...it is freezing and I havent seent eh sub for at least a week! I wish I was in LA right now!

I went to Cleveland Clinic on the 5th. I saw a neurologist, but not at the ALS clinic. He did not look at any of the papaerwork from all of my past Dr. visits. He only gave me the old clinical look over, said I looked fine and had no clinical weakness and told me I had benign cramp syndrom?!? So far I have had a diagnosis of Chronic fatigue syndrom, fibromyalgia, BFS, Benign Cramp syndrom, and a Hepatic Virus that entered my nervous system. My guess is that I actually have all of them and they have combined to make a new disease that I get to name since I just discovered it.

How do they test for MG? Which specialist can do this? How can I get anyone to test me for it instead of just waiting for me to get so bad that I cant work? Sorry about the bad humor, its all I can do to get by anymore. Thanks for your replies.

CB in Ohio

 

[BethU]

CB ... They do blood tests for MG. It is an autoimmune disease, and they have identified two antibodies so far that are implicated. These two tests are the MuSK and the Achr (I think that's it). The neuro who diagnosed me with it actually did three tests ... one an "anti-achr" or something.

About 90% of MG patients will show positive for one of these antibodies, but the rest are diagnosed from clinical exam. There are other tests, too ... Rose posted today about the tensilon test .. you could do a search for her post. And there is a medication ... Mestinon ... that is a kind of diagnosed too, as it relieves some of the symptoms for most patients. But if you have twitches to begin with, watch out with Mestinon ... I never had any twitching till I took Mestinon, and then it was very bad ... almost drove me up the wall. It's BFS-type twitches, not the quiet, polite little motions we get with ALS. Aside from side effects of Mestinon, twitching is not a part of MG.

I think any doctor could order the blood tests, but the MuSK especially is very new (couple years) and I had to wait over a month while they shipped my blood sample around trying to find a place that could analyze it.

There is a great online forum based in the UK for MG patients. Lots of reliable information. And the American MG society is extremely helpful, too.

MG can be cured ... it's a tough treatment, lots of steroids to shut the immune system down and then wind it up again ... but "remission" is one of the most beautiful words in the English language, along with "benign."

 

[awieleba]

hi

what exactly do you mean by hepatic virus? and how did they determine that? I have some issue's with my liver, that is why I ask.

I am due to go to the cleavland clinic on feb 4th to the als center but I may wait untill march so that I can see Dr.pioro who heads up that whole dept vrs one of his fellows.

I have had the breathing issue on and off since my pregnancy so I thought it was realted to that. Then I got it after the baby and thought it was from the c-section. The breathing has gotten better and comes and goes. sometimes I have to really focus on breathing in as deep as I can and exhaling. I also try the stacking method that I learned about on this site. IT is strange for me becuase my breathing is better when I lay down.

take care

 

[lydia]

Hello CB,

I found your post a timely one as I also have experienced some strange breathing issues in the last few weeks. I don't have any suggestions since I don't even know what to do about my own stuff, but would like to share: Since shortly before Christmas I started feeling lightheaded or slightly dizzy...maybe sort of stoned is the best description (for lack of a better phrase). This is always. It is not pleasant and it has gotten so that I hesitate to leave the house. Maybe if there was some euphoria (darn)...

Then about a week ago I also started feeling very odd when lying down; I became very aware of my breathing and feel the need to take repeated really deep breaths and am very uncomfortable. And like you, the same thing happens after meals-whether or not I am lying down. I don't know if I should trust myself and the "new symptoms"....I think that if you start thinking about your own breathing then you can inadvertently impact it for the worst. In fact, I was notorious for hyperventilating at meditation class! Anyway, I googled my symptoms and found that they can be a result of stress/panic/anxiety. I have been feeling pretty down since my last visit to the new neuro so perhaps my emotional state is contributing to it all. I have not called my GP about it since ....well...I just feel as if I have crossed over into hysteria (or appear to) and quite frankly am embarrassed about naming one more "issue". Especially if it is something I am creating due to anxiety.

I thought I would give it a few more weeks and see what happens. But I really just hate that I feel that I can't share with my GP. Like you, I also wonder if something is up with my diaphragm. I have experienced this tight band feeling around my lower ribs that has intensified in the past few weeks, as well as nasty ribcage cramps. So I was thinking...as an alternative to immediately sharing with my GP the latest symptom perhaps I will continue with these sleep studies I started in the summer. I have had two sleep studies done (overnight oximetry (?) at home and then an overnight at a lab) that apparently showed a bunch of nighttime breathing issues. This was at the beginning of my search for an explanation and at the time I decided not to pursue it (HATE sleeping in a bed that is not my own) and focus on the other stuff. But I am sorely tempted to go back (they keep calling-3x a week!) and get fitted for the c-pap. I figure if there is something wrong with my diaphragm then it will show up in the overnight study...and my GP can find out from an independent source instead of the hysterical patient. So maybe I will bite the bullet and spend the night under the camera in the nasty hotel like bed with the gunk in my hair.

Anyone know if diaphragm issues will show up on the stuff they do to you during a sleep study?

CB, I am sorry to write all about me. Keep me posted on what happens OK? I hope it is nothing...

Lydia

 

[CB1977]

Beth- So if you have twitching, then you probably dont have MG, correct? Thank-you for the great information!
April- I am not sure about the details of the virus, I didnt ask many questions about that diagnosed. Were you reffered to the ALS clinic at Cleveland Clinic or did you just call in?

Lydia- Do you have a ALS diagnosed? I am assuming that differential means yes..correct? Please keep me posted on your progress as well. The weird feeling after eating is what really throws me, I know this is not anxiety driven in my case. When I get these issues, it is when I am not even thinking about my breathing.

Does anyone know if they can do an EMG on your chest wall or rib muscles?

 

[lydia]

No I don't have an ALS diagnosed; differential just meant "suspected" at first, as well as Parkinson's. Both have been ruled out (by the clean EMG, and a PD specialist, respectively). Currently we are exploring the possibility of a mitochondrial disorder, but I have avoided calling to schedule something I need to do regarding it for no good rational reason. Keep you posted-

Lydia

 

[brendapals]

CB-

My responses are usually short and to the point. I hope this post is my norm.

First of all, has your home been checked for carbon monoxide? If you have one of the monitors in your home, time to check the batteries, if not, I'm sure your local fire dept would be glad to come check out your house.

Second, if you are having these new breathing problems, by all means, call your family dr and get in to see him/her. Or if it is really bothersome, go to your closest ER or out-patient clinic.

Third, yes, I am a nurse, and the first 3 things we are taught to look for are the ABC's- that meaning Airway, Breathing, Circulation- some of what you describe could be an anxiety problem that led up to hyperventilating. I don't know because I wasn't there, however, I would definitely go to the dr.

Fourth, I was diagnosed with ALS on 6/3/08. I get a little out of breath sometimes, like when I lay on the floor and paint baseboards for an hour, and then try to get up! I've had sleep apnea for years, wear cpap at night ( when I remember ) and can't really tell if it helps or not. I also continue to smoke menthol cigarettes, yes, I know it's bad, but what's it gonna do- give me ALS? I only manage to have about 5 a day- too much trouble-I don't smoke at home or in my van, and it's too cold to stand outside very long!

Gosh, sorry this is so long,
Not like me to type so much,
CB-I wish you only the best,
get some rest and keep us posted,
-brenda

 

[BethU]

CB ... don't take my word on the MG. It's been a year since I was frantically Google-searching on it. It is my impression that twitching is not a part of it, because the muscles don't die with MG ... they remain healthy and ready for action. The motor neurons also remain healthy in the brain. It is an anti-body that keeps messages from the brain from reaching the muscles. But I "THINK" I'm right. MG = no twitching except as side effects of the meds.

 

[planningguy]

Beth - Thank you for the vote of confidence, whether it was deserved or not. I'm a googler too for the most part

Lydia - A sleep study would get at diaphram issues indirectly. A comprehensive sleep study measures both blood oxygen saturation and airflow. A "sniff test" would be a more direct evaluation of diaphram function.

Take care,

Robert

 

[CB1977]

Brenda- Thank-you for the reply. I dont have a detector, but I will get one. I am certainly going to the dr. regarding my new symptoms. The weird thing about my symptoms are that I dont have clinical weakness in any muscles, but I have profound progressing muscle fatigue globally head to toe. Its like my muscles, including the ones I talk with and breath with, get tired easy. It is much worse as the day goes on. From what I have been told this is not an ALS typical symptom/progression. The reason I come back here to post though is that many people on this site have been through the ringer and have gathered some good information during their long journey. Thanks everyopne for your input.

CB in Ohio