New symptoms

[CindyM]

CB: I also have muscle weakness, twitching, some muscle wasting, and reduced lung function. The ALS clinic did not know what is causing this, just "something neuromuscular."

My GP, local neuro, and local pulmonary doc have decided, informally, to call it MG. This means I do not have a DX of MG but just this morning the pulmonary doc told me that I should use my bi-pap "like an MG patient would- meaning any time during the day you feel tingling, nauseous, light-headed, and like a small child is sitting on your chest."

For me, the tingling around my face or in my fingers is a sign that it is time to stop, rest, and use the bi-pap if it gets worse. It is a sign my CO2 is building.

We found this through several tests. It was harder to pin down because the weakness is not in my diaphragm, but higher up in my chest muscles. So they had to do a bunch of pulmonary function tests instead. And I had lots of overnights at the sleep lab.

A year ago I'd have sworn this was going to be ALS or something of that nature. Now I feel confident and good to go. I'll just have to pack my bi-pap, is all, LOL.

 

[CB1977]

Cindy- That is interesting. Do you have any issues after eating? How did they decide that its not ALS and is possible MG? Will the issues continue to progress with MG to the point that you have to be on a vent machine or is this something that is treatable? When you say you have muscle weakness, do you mean clinical (your neuro can see it) or like me it is percieved but not officially clinical? What were your EMG's like? Have they been clean, then dirty or all clean? One last thing- I have developed dark circles under my eyes that never go away. SOmeone said to me 2 months ago that this is sometimes caused by poor circulation not getting enough O2 into your system? This is starting to make sense to me now. Thank-you for your response Cindy.

CB

 

[BethU]

Cindy ... I'm going to sneak in here again, too, because the symptoms I've been afraid to mention are pins and needles and tingling, all in a defined area of my scalp. If this is a sign of a CO2 problem, I can (hopefully) rest easy that people with neurophies won't think that these are ALS signs, which they are not. I know that something else is going on with me, and ALS is only part of the answer.

On a question from CB, today, MG usually doesn't progress in patients too far, because neurologists know how to turn the immune system down, and eliminate the antibodies. So the prognosis for MG is usually remission .... you don't end up on a vent. It's not needed. They can usually "cure" MG before respiratory problems get going, but respiratory issues ARE important to monitor.

ALSO ... if you talk to a neuro about your symptoms, use the word "weak," never "tired." That's what I picked up from forum hopping.

 

[planningguy]

CB,

You don't happen to have GERD do you? Significant acid reflux can cause shortness of breath, gets worse when you lie down, and is intensified by large meals. Just a thought. Some other symptoms could include, chest pain, some difficulty swallowing and dry cough.

Take care,

Robert

 

[rose]

CB, I'm at a loss, just wanted to respond as a friend. As hard as it is, the more pieces to the puzzle you have, the easier it (should be) to solve. Keep your chin up!

 

[crystalkk]

CB,

My suggestion is have your gp refer you to a lung specialist. They can do testing to see if it is your lungs or breathing muscles.
And like Cindy said it does not have to be the diaphram it can be from the chest muscles.

 

[awieleba]

CB~

I was not referred to the cleavland clinic, I called myself. My current als doc said that if I want I should get a 2 opinion-her's is that I dont have als, at this point but it takes time for these muscle disease to present. I just want anther set of eyes and I am due for an emg that would be one yr from my last, or just short of it.

I have the same as you with global muscle issue. I cant say that one muscle is far worse than the other. My left side 'seems' weaker. But I feel weak all over and it does effect my eating or like chewing gum. It is strange, it was legs first and then my feet and then the hands and arms etc, but they all seem the same now, same as in all weak. I cant work out but I am thankful that I can get about my days with my 3 young active kids normally. So, how can I complain if I can do all these things and hug my kids?

I was suppose to do a sleep study as well, maybe a sniff test but I just decided no way. I dont want to know or have any other mysteries out there of why this or that. In the begining I wanted all these anwers but fond out that those answers are not easy to get. So, I figure when it gets bad enough, I will know it! I will do the emg and then get on with it....

good luck to you, and maybe you should consider going to the als clinic at CC, if you are worried?

 

[CB1977]

Robert- thanks for your reply. I was checked for Gerd about a year ago. They determined i did not have it.

Crystal- Thank-you for the reply, I am going to my GP on Thursday and I am guessing he will suggest the same.

April- Please keep me posted on what they say about your condition. My situation sems similar to your as far as teh global weakness. Have you had any breathing issues?

 

[brendapals]

CB,
I was just at a routine visit with my pulmo today. He told me what he would use to measure my diaphram strength was the NIF- which I think stands for "negative inspiratory fraction". Mine measured at -42 in Dec. I have no clue what it's supposed to be, but I'm still breathing, so I'm not going to fret too much!
take care and keep us posted,
brenda

 

[CB1977]

Thanks Brenda! That information will come in handy I'm sure.

 

[CindyM]

CB: in answer to you questions about why they say it is not ALS: An ALS diagnosed requires certain conditions to be present. Read Wright's sticky to learn more. But one of the criteria is nerve degeneration. My EMG shows chronic, moderate nerve regeneration. Which means, (in Cindym-speak) that my nerves are dying but growing back.

I held off on doing the happy dance for 2 reasons: I was not sure my nerves would continue to grow back, and I did not know what the reduced breathing functions meant.

But one day I woke up and realized, "Hey! It has been months now and I am still exactly the same!" That won't happen with ALS, and please anybody do not try to convince me otherwise!

Beth- thanks for the info about scalp-crawling. I ge that a lot lately and it is very annoying.

 

[CB1977]

Well- I had my EMG yesterday at Cleveland Clinic. I wont have the results for a few days but I can say the service I received was unmatched. The EMG was very thorough. They did at least 15 spots. I will come back with the results when I get them next week. So I have had progressive symptoms since Sept 2007 which presented with unusual stiffness in left back muscles that run up and down my spine. Extreme fatigue since Jan 2008. Twitching and global weakness since Aug 2008. Some breathing issues since Dec 2008. If this EMG comes back clean, I am guessing that I can put MND behind me unless things get significantly worse. I would think that at this point something would show up, correct?

 

[Marjorie R. Wilcox]

My husband, Rick, has been diagnosed with ALS. It started with breathing problems when he slept. I advise you get a sleep study for sleep apnea. Also, if you sleep in a reclining position, you will breathe easier, no matter what your diagnosed could be

Yes there are tests for the lungs and the diaphragm. Rick had two last week. You take in a deep breath and puff it out, with force, into a tube and into a machine. His numbers are worsening, but gradually, as the months go by.

Rick's first symptom was sleep apnea. Then loss of balance. Then muscle atrophy in first one leg and then the other. Now he has one finger that isn't usable, but it could be out of joint. He has apps. about that coming up.

Good luck, and God Bless 1977

 

[CB1977]

When I had my EMG done, something strange occured. When she stuck my forarm area about half way in bewteen my wrist and elbow, I got a shooting pain into my thumb and my thing felt like it was burning. I yelled and pulled away. My thumb was tingling and numb for about 10 minutes. When I explained why the neuro thought that was really strange and said she never had that happen before. Anyone ever had an experience like that?

Cb1977

 

[BethU]

CB, yes, I had something like that happen about 30 years ago. A doctor who was giving me a shot in the rear end hit a nerve in my hip... and wow, was that painful. In fact, it bothered me for several years before it faded away.