Sick and tired of being sick and tired.

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So Geo,

I think God has doubly blessed me with my butt, far more so than any of my friends. I know they must all be so jealous. :lol:

Lydia
 
LOL LOL You know that may be OK .I dont have much ,but im thankful for what he gave me .
 
It's nice to chat with someone who understands how I'm feeling. I think the hardest part for me is that I look perfectly healthy and some of my friends and family seem to think I should be able to do anything. I tire of saying no all the time, but I have so little energy that I need to pick and choose each thing I do in order of importance.

Bill

I can definitely relate to this one. I look perfectly health, too. I am within my normal weight for my size. I had also lost weight 25 lbs in all. They stayed off for 2-3 years and this last year.... they all came back. :x I had held off buying clothes for a year. I figured it was just a fluke.

And Lydia- I agree with you, too. I was constantly saying, "I think I might be getting the flu." Then I would take some extra rest and feel better until I did too much again. That is usually how I know that I am pushing my luck.

Unfortunately, I do not feel that I am going to get another good stretch. My muscle spasms/cramps are coming much more often and I just feel different. I am beginning to lose hope, I guess.

It has been so wonderful to talk with others who understand this nuisance!

Ronda
 
Ronda,

You can't give up, there is always hope. Trust me I know how you feel but one can't give up. I'm trying to get in touch with you but can't figure out this private message thing.

Hang in there,
Bill
 
Bill- you will be able to send a private message after a few more posts. We had to set in some controls since the spammers were taking over the board. Just keep doing what you are doing and soon the new software will "see" that you are a real person! Cindy
 
Thanks Cindy, everything I read said I should be able to.

No problem, I'll hang in here.

Bill
 
Gag reflexes and swallowing

I'm wondering if anyone else out there has lost their gag reflexes? I haven't had any for quite some time. I asked my neuro about it and he said he didn't know. On some web sites they mention gag reflexes but it's very vague.

Another question I have is those of you who have trouble swallowing, how did it start? My neuro says I'll have trouble drinking water but I don't. I do have to swallow everything two or three times before it goes down, and it seems to be getting worse. I'm just curious what the rest of you have experienced.

Bill
 
Ronda,

I haven't heard from you in a bit. I hope you are doing well.

Bill
 
rhonda and bill

along with spasms ,stiffness and balance issues fatigue was right there up on the list from the start.
early on in my illness i could be bedridden for a week or more and not have energy to move,everyone thought it was ms due to this as after a severe faitgue episode my neuro function would decline.
i dont have those episodes anymore just general fatigue,fatigue is bad news and indicates neurological trauma.
i have learnt to manage this by doing what i can and need to do,but knowing when to rest.
rhonda your progression is similar to mine,starting waist down and working up to npow bulbar symptoms. i have had mnd 9yrs.
bill,i have said in the past the fatigue is worse than the pain(believe me,i know what major pain is) but at least you can move and try to function with pain,were as with severe fatigue no amount of will power helps.
 
Caroline,

I don't handle the fatigue thing very well. It doesn't even occur to me that there is a reason I feel the way I do. I don't know why that is. I'm probably harder on myself than anyone else is.

It always amazes me when people on here complain about pain associated with PLS. My neuron maintained that there is no pain associated with ALS or PLS. I heard that for three years before I finally did something about it.

Thank you for responding to my thread, it's good to hear from other people.

Bill
 
Bill,

You mentioned that you dealt with the pain issue only after 3 years. My mom is almost at the 3 year point and todate the diagnosis is PLS (clean EMG and upper motor neuron symptoms only). She has had pain now for almost 10 mths and was told that they did not know what it was. Recently it's been diagnosed as bursitis which apparently according to the neuro is common with this disease (perhaps due to gait issues). She was given medication but it has not been effective yet (3 weeks into it). If it does not go away they will do a steroid injection in the hip.

What did you do to address the pain and has it been effective?
 
Sral,

I mentioned above that they finally diagnosed my leg pain as degenerative disc disease in my last three discs. After taking pain meds, therapy and a ton of other things they suggested that I have a spinal chord stimulator implanted. They did that and I haven't had any leg pain to speak off. In fact, when my legs are really feeling weak I turn the stimulator up and it seems to help that also.

I know this isn't for everyone, but for me it was just the ticket. Hope this helped.

Bill
 
I guess there are many sources of leg pain. I'm very happy to hear that it has been resolved. I agree that we need to keep pushing for answers until the problems get properly addressed. I'm hoping for a positive outcome for my mom's leg pain too. I think that although PLS is not fun to have, the addition of pain is not helpful or fun. Hopefully she will be in better spirits when this gets resolved. It's too bad that precious time is wasted. She was much more mobile 9 months ago but was out of commission due to the unrelated PLS symptom - PAIN.

thanks for your answer Bill.
 
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