scared to death

[sdsyd]

Hi Lost-

Around here we worry a lot about Lyme Disease and West Nile Virus. There are So many things that cause fatigue!
The only time I've ever felt the sort of fatigue your talking about I had Influenza and it felt like I had fog in my brain. Thankfully it resolved in a matter fo days.

Hope it gets better soon.

~Cindy

 

[lostinlouisville]

Question about weakness

Hi guys, Question about weakness in hand. My right hand is twitching more these days and I am dropping everything but mostly small stuff cig. fountain drinks, coins. etc. Does anyone know why it is easier to hold larger items? Also we are moving this month because I need a home now with bedrooms and laundry room on main floor. Even though I believe this new house will be better for me, the thought of the energy and strength to move overwhelms me. Goes anyone know anything to help with energy and strength through this? I do not go back to neuro until Aug. for emg. Thanks for your help and God bless.

 

[Jennifer51]

Confused by diagnosed

new member... I too am confused about my diagnosed.... I had slurred speach, and was sometimes spurting out drinks....( I had a serious bang on the head at christmas (2007)and thought it was something to do with that). On March 31st this year, went to my doctor, who sent me straight to a Neurologist...and on day 1 he said he thought I had Motor Neurone (as they call it in UK)...Had brain scan, and yes had some normal ...age related spots on it....I am 56. otherwise scan was normal, no sign of damage from my fall. Had EMG, Lumbar Puncture and blood tests. The EMG came back with ...concrete evidence...that I have Pseudo Bulbar Palsy. NOW for the confusion... I have had a great deal of pain in my hips, and lots of pain from cramps...this has been all but stopped by drinking Tonic water, which I hate. but heck it works for me. Twitching has been severe, but now reduced after taking Rilutek. Now my legs are really weak..it is difficult for me to walk upstairs now...and a wheelchair was delivered today...for long trecks only... I am excercising as much as I can on a treadmill and excercise bike..to fight the whole thing.... My speach is not so good, drinking and eating are getting harder...and this is all in 3 months... But if it is BULBAR, why are my damn legs, and arms now getting weak...and I have not heard anyone else complain of a lot of pain.
You know what it is like, most of the time I am fighting this damn thing and saying it wont beat me, but sometimes.........
I have had a second opinion, which agreed with the first and I am going to an MND clinic this week, so maybe will find out more then...
Jennifer

 

[lostinlouisville]

Jennifer

Thanks for the post. I am sorry to hear about your diagnosed. I know exactly what you mean by saying you think you are going to beat it. I go to bed every night especially since I have no diagnosed. and think tomorrow what ever this is will have ran it's course and I will get back to my life. Everyday I wake with a brand new attitude but most day it is robbed by a new symptom or old one that is getting worse. I do have alot of hip pain to[DRS. SCRATCHING THEIR HEADS ON THAT ONE}. I will keep you in my thoughts and prayers. Good luck a the clinic. And may you find a blessing everyday.

 

[awieleba]

lostinlouisville

HI!
I had an Mri 8 yrs ago with small lesions in the white matter. The local neuro told me and my husband I basically had MS! (before anyother tests) we cried, I was planning our wedding. Then they did nerve test, lumbar, blood, and was sent to MS specialist. He said NO ms, that the lesions I had were not MS type. All other tests were fine. And during that few months I went off birth control pills and all symptoms stopped(hormone)

Then 2 yrs ago, my thighs felt weak and tired and I was sooo weak and tired. I thoght, well maybe I really do have MS. Went to a new neuro and she did a new MRi and and exam and said no MS. after a few weeks my legs felt great enough to be back playing tennis.

March of this year, thigh weakness and twitching led me back to her. She repeated Mri and had them compare to the one 2yrs ago to see if any changes to lesions. (this would be more indicative of MS). NO significant changes were noted. (at this point I would take MS over what I fear I have!)

SO, yes I have had these lesions for over 8 years (hey, they could have been there longer but who would know?).

I to go to bed thinking it will better tomorrow, and it is. Untill the afternoon and the exhaustion from the 3 young ones! I can not think of a better way to get exhausted!

I have not been diagnosed yet. I have ncv/emg at als clinic. They were clean. I am still working with her to find source of all this. She said at 2 vist she does not suspect als, but at the last one (3rd) she said she doesnt think so but "really hopes that it is not als". Not sure what that means or if I am reading into it.

take care and love on the kids! God bless you for adopting babies in need. YOu sound like a special soul!

april

 

[gbrown]

ALS and Pain

Jennifer:
I was diagnosed'ed with ALS 2 years ago and have had symptoms for 7 years. The only pain I have ever experienced was leg cramps at night. Early on, my MD prescribed Quinine for me and I took 1 before going to bed and that took care of the cramps. Unfortunately, the FDA outlawed the use of Quinine last year, so he put me on a medicine called Qualaquin. It is almost the same but just not quite as strong.
Everyone I talk to says ALS does not produce pain. Also the theory that ALS hits one side first is not right. Mine started in both legs with loss of balance and strength and then worked its way up into my arms and hands and then into my throat and speech. My left side was weaker all the way up but I am also right-handed and right-footed. All PALS have different symptoms which is one reason it is so hard to diagnosed. The loss of muscle beween my thumb and fore finger was a dead giveaway according to one neuro.
Good Luck,
Gordon

 

[awieleba]

Oh I forgot to ask, did they do mri on spine. the lower and hip? I am having a lower spine mri this week. I have alot of low back pain. When I was pregnant i played a long tennis match and had to retire becasue I was 5 months pregnant and i felt like i pulled somthing. I could not sit for 2 weeks. I also was in a bad car accident at 9 months pregnant. So maybe I have a pinched nerve? I had x-ray of whole back that was ok.
I did have an mri of the neck and have some slight bulging discs that could cause neck pain. We will see what mri of low back says. I am not getting my hopes up:neutral:

I find it hard to believe that one person would have like 5 different things going on at the same time versus one thing that causes alot of symptoms! Take care and lets share.

 

[fiddleplayer51]

Jennifer,
Welcome to the forum. Sorry about your diagnosis and problems.

I would think you should lay off the treadmill and exercise bike. If you are experiencing cramping and pain in your hips and your legs are now weak, I would caution you that there may be more involvement now than when you had your EMG in March. If there is more involvement, "exercising as much as you can...to fight the whole thing" is one of the worst things you can do. It sounds as if your body is telling you something.

My husband had bulbar-onset ALS diagnosed this past April. He is 65. Prior to that time he'd been an avid hiker and used our elliptical exercise machine religiously every day. He began experiencing quite a bit of pain in his hips and stiffness/weakness in his legs, but like you, continued to use the machine. After his diagnosis we learned that this type of exercise to such an extreme is the worst thing he could do. Little had we known prior to the diagnosis that the muscles in his legs are not getting full nourishment because of the neuronal death caused by the ALS, and that's why forcing them to work is very detrimental.

If you have involvement now in your legs (heaven forbid!), all the exercise in the world is not going to help you maintain what you have. Moderate walking can help to a certain extent, but never exercise to the point of fatigue.
Good luck to you. Did your neuro suggest a repeat EMG or subsequent visit with him in the near future?

Keep us posted and take care of yourself.
Jane

 

[fiddleplayer51]

Hello lost,
Sorry about your symptoms and concerns.
I'm sure the idea of moving weighs heavy on you now. Are you in touch with your local ALS support group? Perhaps you could call and ask if there are services where people volunteer their time to help with such things as moving. Sometimes colleges/universities have students that would love nothing better than to volunteer their time. Here is contact info for the Louisville KY support group:

Louisville Group
Cardinal Hill/Easter Seals Center
9810 Bluegrass Parkway
Louisville, KY 40202
502-412-3088
888-412-3088

[email protected]

Good luck. I hope you can line up help with your move. Keep us posted on how things go.

All the best,
Jane

 

[lostinlouisville]

April

Thanks for your reply it did help me understand the MRI a little. The comment about me being a special soul I don't know about. I adopted these kids then feel like I may be letting them down. I really wish I could get past this physical mess and be there for them more fully. I feel like my older kids have had the best of me. Then I think if something was to happen to me, the older ones would feel it the most. Sometimes I question why I felt the strong leading to adopt just to let them down. They are beautiful kids and I don't think they have a clue about me and how I feel. I hope I can keep it that way.

 

[awieleba]

I can relate. We prayed and tried for the 3rd baby. (i have had 2 miscarriages along with the 2 boys). I wanted a little girl, when I fond out it was a girl, we named her Grace. A true gift from god. Then one month after she was born, I ended up in hosp. 3x within 3 months and then all this started. I cant make since that why this is happening after giving birth, when every one needs me so much! Just doent seem right for them. All i know is I am here TODAY. It took me months of worry and fear (oh, and lexapro) to get to this point of trying to accept each day and give this to god. I have real bad days and then good ones.

I dont let my little ones know there is anything wrong. Althogh, when you are going to run errands and they ask me "are we going to the doctors?", well maybe there has been alot of that!

At night when lying in bed with the boys, they will say " i missed you so much when you were in the hosp., dont go away again". It breaks my heart I will do what ever it takes to stay with them as long as i can by any medical means necessary.

I will be in it with you, no matter what happens, we have all the caring people here. ALot of them are already where we fear to be. I feel that if we go down that road, it is huge to have some guides.

Take care and keep me posted! my next emg is not untill november! mri this week.

god bless

april

 

[olly]

hi

i too get hip pain every so ofton and my right hip is weak,but my shoulders are the same also. this is caused by muscle spasms and joint contratures from umn involvement. pain is now a recognized symptom of als due to umn involvement.
take care.
caroline.

 

[Irene Wells]

Irene Wells RN. Ret.

Hello;
I was just diagnosed with ALS last month. I can tell you this; I have had no pain with this condition. I have overwhelming fatige much of the time. It took 3 months to get this diagnosis. I've had 2 Cat Scan, 2 MRIs, 2 EMGs, spinal tap, and several blood draws and an chest xray and several neuro checks to come to the definitive diagnosis. I started with an unsteady gait and fatige. It has been downhill since then. In just 3 months, I have gone from a cane to a walker and wheelchair. I keep losing ground. My suggestion is for you to find a neurologist that specializes in ALS patients. I hear that ALS is different in each person. So consider seeing a specialist, 2 tests don't make a diagnosis.
Good luck and know that I will be praying for you.

 

[fiddleplayer51]

Irene,
Welcome to the forum although I'm so sorry for your diagnosis and the many tests/labs you had to endure to determine it.
Years of nursing others and here you are! It's such a shame. Did you ever have ALS patients in your care during your career? In my 15 years as a staff RN at our local hospital I never once had an ALS patient, but during those years I took care of quite a few MS patients.
I hope you find that these forums are a help to you as you navigate this horrendous path. Keep us posted on how things go for you.
All the best,
Jane

 

[Jennifer51]

i too get hip pain every so ofton and my right hip is weak,but my shoulders are the same also. this is caused by muscle spasms and joint contratures from umn involvement. pain is now a recognized symptom of als due to umn involvement.
take care.
caroline.

Thanks for the reply, though not what I wanted to hear, but what is with this disease.
(diagnosed speudo bulbar als April 08) I have pain in my hips...much reduced by drinking tonic water now, my muscles in my arms are also painfull as are the muscles at the base of my neck/shoulders. and my elbows...you are one of the very few to have experienced pain that I have heard of. I am sure I am now having problems with balance... I have been looking up PLS and hoping that they could have the diagnosis wrong, as my symptoms sound more like that...but maybe that is wishfull thinking..
Jennifer51