scared to death

[lostinlouisville]

Hi, I am a 44 year old women, who feels like 80. About 2 years ago my right hip started hurting, did not think much about it until it started interfering with my life everyday. then about 8 months ago I noticed a little twitch in my right fingers which has now progressed to hand tremors I have blurred vision and stiff neck and find it a little hard to swallow. Swallowing something twice usually works. Went to nuroligist he did an mri with contrast and eeg to rule out ms and simple partial seizures they were both neg. so he just dropped it at that, no follow up visit or anything. I am trying to help my daughter plan a wedding but do not have the energy to walk more than 30 minutes and just have general fatigue any suggestions

[boxer22]

Hi, I am a 44 year old women, who feels like 80. About 2 years ago my right hip started hurting, did not think much about it until it started interfering with my life everyday. then about 8 months ago I noticed a little twitch in my right fingers which has now progressed to hand tremors I have blurred vision and stiff neck and find it a little hard to swallow. Swallowing something twice usually works. Went to nuroligist he did an mri with contrast and eeg to rule out ms and simple partial seizures they were both neg. so he just dropped it at that, no follow up visit or anything. I am trying to help my daughter plan a wedding but do not have the energy to walk more than 30 minutes and just have general fatigue any suggestions


Hi,
I am not a doctor but all the literature I have read says that Pain is not a symptom of ALS. Either is blurred vision. Also, Everyone has twiching to some degree. Have you had an x-ray of your hip? That might be a good place to start but only your doctors knows that. I think you can rest easy about the ALS thing but if it is still bothering you maybe you should see another nero.

[wright]

Hello lostinlouisville

I'm not really seeing anything that should cause too much alarm. The stiff neck and swallowing problems could easily be explained by worrying about your health (tense neck and swallowing muscles). I'm not sure if I know anyone that doesn't twitch (especially during times of stress and worry about your health and planning weddings would certainly qualify as stressors). I didn't hear anything about weakness and muscle atrophy. Twitching for that long without those two symptoms is another good sign.

I would certainly go back to your neuro until they determine what the causes of your symptoms are. If he/she doesn't help you further, go elsewhere.

Now go help pick flowers, invitations, seating arrangements, etc. That's all you need to worry about at the moment . . . well . . . that and writing checks. :-D

[CindyM]

One thought that comes to mind is that once the wedding is over you may want to see a neurologist associated with a large teaching hospital. I'm thinking you may want to wait because this involves a battery of tests, and a waiting period for the results. Sometimes these tests will pick up other, treatable, conditons that your local guys might miss. However, all this is very stressful when you are already in the midsts of a happy (but stressful) event like a wedding.

So hang in there before deciding to worry. I've had symptoms for 2 years now and still no DX. I'm still telling myself that it is not time to worry, LOL. Of course I do my share of fretting but the folks around here are very supportive and we help each other out during the long process of finding out what is going on.

One thing that helped me was to read posts from some of the PALS on board. You'll meet a bunch of folks who are enjoying their lives, enjoying their families, and remaining calm in the mists of everything. Hope this helps, Cindy

[lostinlouisville]

Well the wedding is over it was beautiful. Went to nuro yesterday. Twitching is harder and he sounded more confused than before. He orderes emg and blood test cpk ana esr. He also said he would probably be sending me to a muscle disorder dr. after testing. He also started me on gabapentin, i think that is how you spell it. So what do you think.Tnanks

[Al]

I'd be pushing this guy to send you to a large neurological center. Still doesn't sound like ALS but if it''s something obscure the more patients going through a clinic the better chance they will have seen something similar to you.
AL.

[lostinlouisville]

Hey thanks for reply I am having a new problem today. My right knee is buckling with almost every step could it be the Gabapentin or a new symptom. really don't like to call nuro with every little thing. The girl that answers acts like I may be bothering her. thanks

[gbrown]

All the more reason to get to a large university center. It doesn't sound much like ALS to me either but you never know, and until they rule out all the other possibilities (which took me three years of going to neuro's), you will not get a dx. Like I said in another post nobody with ALS has the exaxt same symptoms.

[patricia1]

Hey thanks for reply I am having a new problem today. My right knee is buckling with almost every step could it be the Gabapentin or a new symptom. really don't like to call nuro with every little thing. The girl that answers acts like I may be bothering her. thanks

Time to find a new neuro. It may take 5 neuros to get answers Like I said before alot of neuros are quacks!

[sdsyd]

Hi lostinlouisville-

Glad you enjoyed the wedding! Sounds like everything went beautifully.

About your symptoms- There are alot of different neuro problems out there, and it seems like they go through quite the process of eliminating every disorder under the sun sometimes before making a diagnosis.... but I was curious with your mention of blurred vision if they mentioned MS at all?

Hang in there like the rest of us!! We've all got strange things happening to our bodies :o)

[lostinlouisville]

Thanks for all the comments. Today has been rough. About the question of MS. I actually went to the nuro because I thought I had MS. He did not think from the beginning it was that. He did an MRI and said I had lesions in the white matter of my brain but not like kind in MS. He said you can have them and it not mean a whole lot. I feel like he has been thinking something else from the beginning but not saying anything. He comments mainly on my muscle weakness and twitching under the skin. That is why he says he is confused and ordered emg and wants to send me on to nuromuscular dr. I do have a question. Has anyone else ever heard of normal lessions in brain MRI. He really puts me off when I mention MS or partial simple siezures and says that is not what is wrong with me. I kind of joked with him when he said he was sending me on for a second oppion., I told him maybe he should give my first one before I got a second. I don't think he liked my sence of humor. I am not good at spelling so I hope you all can read this. Thanks again to everyone out there. I keep you all in my thought daily and read alot of what you write and I think you all are so strong and have very kind hearts. I really feel blessed by you all.

[lostinlouisville]

Hey, I Am Really New To This Site Just A Question. When I Want To Go To Profiles Or Follow Other Links You Guys Put Up It Say I Am Denied Access. Am I Not Registered Properly Or Am I Doing Something Wrong.also How Do I Talk To You Guys Out Of My Original Post. Thanks

[Al]

Hi Louisville. When you first join you can't access all the features until you have a certain number of posts. This keeps out spam and sellers of crap most of the time. Carry on posting in any of the other forums.You'll be there soon. If you want to ask a question you can click on the green start thread button on the thread index page and fill in the blanks.
AL.

[lostinlouisville]

Hi everyone, well I have been off my Gabapentin 3 days and my knee's are still giving out. I really don't know if this could Be M.S. symptom. Even though my dr. is so sure it's not M.S. I had wrote in earlier post about Lesions did'nt know if anyone had heard of normal lesions. thanks

[lostinlouisville]

Well guys, I am so fatigued. I mean the kind that draines you first thing in the morning and progresses to tears by 3 pm. I have noticed I can not yell for my children. I have 4 year old twins and a 6 year old at home still and they may go outside without me knowing and I will try to yell for them to come in and I just don't have the breath, it makes me dizzy to try. I feel increasingly out of myself with no energy at all. Has anyone gone through this with a combination of my other symptoms. Thanks for your support.

[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]

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]

new member... I too am confused about my dx.... 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]

Thanks for the post. I am sorry to hear about your dx. 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 dx. 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]

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 dx 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]

Jennifer:
I was dx'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 dx. 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

patricia@alsaky.org

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

All the best,
Jane

[lostinlouisville]

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:cry: 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]

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]

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.
(dx 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