can it be ALS - Page 2

sandradenise · 10-12-2009, 05:51 PM

thank you Joel for your encouragement. I am trying to sit here and type but my hip and leg hurt so bad. My cramps are so strong they leave bruises > Is that normal?

Sandra

joelc · 10-12-2009, 09:59 PM

Sandra, that sounds extreme. I have not had that happen or heard of anyone having such severe cramps they leave bruises.

When I was having what I classified as severe cramps I took Quinine and got good relief. I understand you can not get it in the United States so the next best thing is Tonic Water as it contains quinine. Also, drink lots of water, that helped me a lot.

Have you talked to your doctor about this?

sandradenise · 10-13-2009, 04:31 PM

I called a my neuro this morning and the nurse said it would be a few months to see him. Then she asked if I was ok and was this a follow up or problems. She worked me in for next Friday the 23. She could not recognize my voice it is so hoarse and weak sounding today. I told her about the presistant cramps and twitching and the bruising now. I am dropping things and walking like I am sleepy. (Drunk) Which is funny because I have never drank anything strong than a cola.

By next week my voice will probably sound normal again. Does that happen to anyone else? I need him to hear me and see my twitches and cramps. I need an answer. My mind tells me I already know. Call it instinct or whatever...

Sandra

Zaphoon · 10-13-2009, 04:58 PM

I went through a period when my voice would get weak and hoarse but haven't had an episode of that in a while. My neuro saw the twitches hard at work during my last visit but didn't say much. He also noted how tight my lower leg muscles were and asked if my cramping was bad enough to keep me awake or awaken me from sleep. Nope.

I'm sorry you are having so much of a hard time. I hope things ease up for you!

Zaphoon

sandradenise · 10-14-2009, 10:39 AM

the waiting to see what is next is hard. How do you manage? I have a positive attitude most of the time but I wonder off into what if land when I am by myself. This forum has really helped me alot. I can't tell anyone at work what is going on. HR said someone might can use it against me so I have not said anything to anyone not even my closest friend. I have not told my family because I do not want to worry them. My dear husband knows of course but he does not want to talk about it at all. So we don't. I tried to tell my 90 year old Daddy but he ignores the subject also.

My aunt who was the sister of my uncle who died of ALS told me that only men can get als and it is not inhereited. So I don't bring it up any more. My Mama died in 2003 so I can't talk to her. Boy I sure sound pitiful . Sorry ... Hey my cat and dogs listen.

My new friends on the forum have been the most help to me in years. How do you manage ?

Zaphoon · 10-14-2009, 01:17 PM

I manage by finding the whole thing very entertaining. You never know what is going to happen next. The twitches now amuse me rather than scare me. The weakness that comes on doesn't hold me back; I use two hands instead of one. Its just another day in the neighborhood!

Zaphoon

kylisa · 10-14-2009, 02:50 PM

I understand what you are going through with your neurologist. My mother had the same kind of experience. It got to the point that I had my own doctor refer her to a neurosurgeon. After that the diagnosis came fairly quick. I hope you do not have this disease but, if you do, you need to know so you can deal with it.

hopingforcure · 10-14-2009, 06:35 PM

Hi Sandra, you know I remember when I first came to the forum, and I was a new-member-a ton of new member's at that time, so many were sure they had a MND. I am glad to tell you that all of those people turned out to NOT have a MND. and either get better or have something treatable. I never thought I could go on at first, but you just start putting minute to minute day to day week to week together, and well thing's get better mentally. What at first seems unacceptable becomes acceptable.

sandradenise · 10-17-2009, 11:47 AM

My tongue has starting fascics and it fills like bubbles popping on my tongue. It feels so weird. My grandson stayed the night with us Thursday (he is almost 5) and he saw the twitching in my arms and face and thought it was cool. He started rubbing my arm and neck. He fell asleep in my arms and I could not lift him or get up to put him into bed. My husband had to take him from me and put him in bed.

That evening I watched Dylan play fall tee ball( So cute). I take a chair to sit in. I tried to sit on the bleachers but could not. Someone kept talking about me sitting there in my chair and my husband and daughter-in-law were sitting on the bleachers next to me. I was watching the kids play and a couple of women kept looking and saying things. It takes me a few seconds to stand up and then I have to hold on to something to get my balance and steady myself before I can walk. Is that normal for anyone?

My speech was so slurred that day so I didn't say much. It is so frustrating to have to repeat myself. I feel the muscles around my lips and chin doing weird contractions.

Zaphoon · 10-17-2009, 12:24 PM

I just went back and read over your postings in this thread. I would say what you are experiencing is probably somewhat common for whatever it is you are going to wind up being diagnosed with. I know this is of no comfort to you.

You state that this has been ongoing for 2 years and that you had an uncle pass away from ALS a while back. Your symptoms, coupled with your uncle's disease, raise alarm bells for me. The intense cramping episodes, the tongue fascics, slurred speech and muscle weakness you've been having are surely indicative of something out of order.

I'm glad the neuro is working you in for the 23rd. Here's hoping you are able to get to the bottom of things very soon! But, in the meantime, remember that there are still many possiblilities out there and many of them very treatable. It's not ALS until it can't be anything else!

Zaphoon

halfin · 10-17-2009, 12:51 PM

Hi Sandra, I wanted to mention something about hoarseness. I too have been dealing with that for the last couple of months.

I saw a speech therapist on Thursday for a swallow study. They have you swallow different things in front of an X-ray machine to make sure they are going down the right way. For the most part I was OK, except for when I drank the thin liquid, some got sort of trapped in an area of my throat where it could go down my windpipe. I didn't actually choke or cough as I sometimes do, but she said it was not good and I should be sure to swallow carefully.

Anyway, about the hoarseness. She listened to me speak for a few minutes first, and said that my voice sounded "wet". She asked me to cough and swallow, then speak more, and felt that my vocal quality was improved. Then when we did the swallow study and that liquid got trapped, she showed me how it was only an inch above my vocal chords. If it gets down there, that is considered "aspiration" which can lead to pneumonia if you are unlucky, something very much to be avoided.

In my ignorance, I had never realized that swallowing saliva or liquids does not get down to your vocal chords. In fact, they are never supposed to get wet from swallowing. But I think maybe that has been happening somewhat, and perhaps that is related to my hoarseness.

Based on what she said, then, it sounds like the best advice is to try to avoid choking on liquids, and to give a good strong cough if you feel something start to go down the wrong way, to clear it out. Try to keep the vocal chords from getting wet. Maybe that will help with hoarseness.

BarryG · 10-17-2009, 01:05 PM

Something else I was told was that if I was to drink unthickened liquids it should only be water and only with a clean mouth. The potential for aspiration pneumonia is greatly reduced if all that is aspirated is clean, plain water, so no juice, soda pop, beer, or other liquids and make sure there are no left over food particles to go down the wrong way. This means no unthickened liquids with meals, not even water.

The only way that I can drink anything now is to bend over and drink water out of the tap. When I am bent over the water doesn't go the wrong way like it does if I am upright tilting my head back. Oh, and through my peg tube.

sandradenise · 10-18-2009, 05:49 PM

Barry , I tried your method of drinking and some of it worked so far. I cough everytime I drink or eat. It is like it is trying to go down the wrong pipe. And have to keep clearing my throat. Hal, does that sound like what the specialist was talking about to you?

Sandra

BarryG · 10-18-2009, 06:27 PM

Sandra, I am glad that it worked for you even if only a little bit. It is like that for me too and works best if I slurp the water out of the stream from the tap with my head turned to the side. I have installed bar taps in my house so that I have more room and the water stream is longer. I still cough, spit, and drool with this method but at least I can drink a little this way. Like I have said before, I just need a tap to dispense beer and I'll be happy!

sandradenise · 10-25-2009, 06:16 PM

I had my appt Friday and I left so angry. He is doing another MRi on my head Thurs. and was so cold to me. He actually asked me if I wanted to go on? I thought he meant more testing more questions but he said no do you want to live. Not only confused but I was very angry with him. Still no answers but for him to say that. I responded to him by yes I have a family , children to be with. He left the room and his nurse came in and asked if I was alright. I was by then in tears and told her how I felt and that he was rude and did not answer any of my questions. That I still don't have any answers to what is wrong. She apologized for him but He is the one who was rude not her.

I am really confused now. He did not even do the reflex tests he usual does. At least he did get to hear my speech this time. What should I do now? Just go on like I am , go back to him , go to someone else? I am so hurt and confused.