Hello:
Thanks first to anyone who responds - I have become frantic in my search for what is causing these symptoms. First started with pain similar to toothache pain in both legs, Progressed to tremors in legs and pins and needles in hands and feet. Ringing in my ears when I lay down at night to go to sleep. Fasticulations all over my body. Legs feel very heavy especially when climbing stairs. Extreme fatigue no matter how much sleep I get. This has been going on for 9 months. After physical activity of any kind it takes days to recover my strength. Yesterday I was watching TV and had my feet up and noticed my toes on both feet moving slightly and I could feel my muscles sort of surging down my legs. I have been to a neurologist and my primary physician ordered an MRI. Neurologist said he saw no evidence of a nerve disease but to come back if I had trouble swallowing. Also can't seem to remember things or concentrate the way I was able to before all of these symptoms. I have had blood tests twice and there is no evidence of Lyme disease or anything else to explain the symptoms. My primary Dr is stumped. Does this sound like early ALS? :confused:

Doesn't anyone have any thoughts - bad or good I want to know what you think - Please :wave:

Hi Deb, Sorry you have the symptoms use have, Pain, pins & needles, Ringing in ears, poor memory, poor concentration, are not common symptoms of als.

Good luck :)

Hello Susan:

Thanks so much for replying - I am in Maryland. Yes - I had a Lumbar spine MRI and the neurologist said there is no evidence of a neuro-muscular disease. The primary physician keeps suggesting that I may have chronic fatigue syndrome but has not officially made that diagnosis. i am getting very frustrated with him becaue this has gone on for over 9 months and I continue to be anxious - imagining the worst.

Doesn't anyone have any thoughts - bad or good I want to know what you think - Please :wave:
I think it sounds like Als , my mother is always tired, and very forgetful. Almost to the point where we can tell her something and she still is very confused. She talks like she is drunk and everyone asks her if she is. She sits and cries all the time, she had cramps in her legs and feet at one time. Constant Migranes, losing weight to almost a pound a day. I am petrified on what is going to happen next...

I'm also scared to death that I have ALS. When I had an EMG test and the NCS, my neurologist said something didn't fit with ALS, but as other possibilities are being eliminated, ALS keeps popping up.

Still waiting on DHL tests at Athena Diagnostic, for a heriditary disease, CMT. It's taking 2 months, and in the meantime I'm getting so weak, that my neurologist is thinking that it's something else. Had a spinal tap last week that was normal.

Will see a specialist in the Houston medical center next week, to get his opinion.

It's hard to be brave with this possibility.

Mary

Hi Deb, Don't mean to be rude, but how old are you. Take a look at the menopause page. They all have the same symptoms.

Hello Susan:

Thanks so much for replying - I am in Maryland. Yes - I had a Lumbar spine MRI and the neurologist said there is no evidence of a neuro-muscular disease. The primary physician keeps suggesting that I may have chronic fatigue syndrome but has not officially made that diagnosis. i am getting very frustrated with him becaue this has gone on for over 9 months and I continue to be anxious - imagining the worst.

My grandmother had ALS.. I don't think it sounds like it. It could be Chronic Fatigue.. which is hard to diagnose from what I hear. Or have you thought about maybe Fibromyalgia? Why don't you hop on over to those threads and read about some of the symptoms?

I have had similar experiences and cab certainly empathize. I think Docs are overly cautious when they know VERY WELL that they have a patient who meets the criteria for Myofascial Pain Syndrome and/or Fibromyalgia. That certainly SOUNDS appropriate to your symptoms. People have bands of muscle with knots in them called "trigger points" that cause aching all over. Most of the time people don't know they have these "knots". If someone pushes on one--it will just about send you through the roof--or givr you really weird sensations in another part of your body. Fatigue, depression and loss of concentration go along with this illness. There is no blood test or xray to rule it out. It has significant over lap with Fibromyalgia. Many people have both conditions. Fibro is diagnosed by a Doc examining you and looking for pain responses. MY physiatrist, when I explained my "hurting all over" pain, told me I had a Myofacial Pain Syndrome BECAUSE "he doesn't like to use the word fibromyalgia". It's over used. Doctor's can be VERY biased--just like the rest of us,

I wish you well in you search for help and understanding.

Sounds like fibromyalgia to me. I have had it for several years and these are definitely alot of the symptoms.

Deb, what have you learned about your diagnosis by now? I have had exactly the same scenario and have been trying to get a diagnosis for 6 months now. Thanks, Glee

Deb, what have you learned about your diagnosis by now? I have had exactly the same scenario and have been trying to get a diagnosis for 6 months now. Thanks, Glee
Dear DEB,
I have recently read about the very very scarey symptoms you have been experiencing. I am hoping you have a diagnosis by now. I have just a little info to offer you; My 50 yr old male cousin was diagnosed long time ago (hes been gone 15 yrs. approx. first 6 months- said he felt super strong. Told each of us to put our hand on his deltoid muscle (arms-bilateral) and "feel the motor running?" Other than that symptom he was fine and had none of your other symptoms . At the end of that year we noticed "overlaughing (hyper-emotions). Of course he had major depression when he found out---- but was good (seemed strong) for quite a while (he went to Hawaii on vacation with us. He had a good time in spite of his diagnosis. He also danced at a family summer party (that was almost 2 yrs after initial dx). His third year -than advanced symptoms-mostly trouble swallowing....and that is what we remember about his als.
I am a senior citizen now and have been thru 2 bad scares in my own lifetime. Not als but ms (I was positive I had it when I was in my 30s. All symptoms just fit right in. Well-disappeared eventially. Worse part was really the sheer panic over a possible central nervous system disease. Most of the things in my life that I worried myself sick over-never came about.
Good chance your headed for better health-maybe by Spring? Hope with all my heart your doin better. Prayers with you,Dearie. SWEDIE

I feel so bad for the people on this site sitting around waiting for a diagnosis. It must be horrible to not know and wonder if they have ALS. ALS is about the worst disease in the world, I just lost a friend from it. I still remember when he told me his diagnosis. He was so scared. They gave him 5 years, he died just under 4.

I agree Airey.... ALS is freightening to comprehend. And when we go to research what are most likely benign muscle twitches and other minor symptoms, ALS pops up!

From what I've gathered on ALS over the past few years (I've had crazy symptoms on/off since 12/03), pins & needles ARE NOT symptoms of ALS. Also, faciculations "all over" are again, NOT symptoms. My muscles have been twitching for the past 2 years, and my nerve conduction studies and EEGs have all been fine. I have recently been tested for MG, and as a result, my ANA levels have come back HIGH (1280), which points to a auto-immune disorder such as lupus. With auto-immune diseases, there are 100's of strange symptoms, which include all of the ones you described above. And again, what I have read about ALS, what you have described does not seem to fit. Maybe discuss the possibility of an EEG and/or NCS to check your nerves. good luck.

Marky1956- Your post just made me cry like a baby. I have also been having pins and needles, then that stopped. Then the muscle twitches started, after I started Wellbutrin. I was/am so scared of something like ALS. I am 32, with 2 small kids, and a wonderful hubby. I had an aunt die of ALS, so I know how bad it is. Your post has eased my fears for now. I still don't know what I have, but I have been praying for a sign to let me know that this is not ALS. I think your post was my sign. My Dr keeps telling me its not serious, but my mind says otherwise. I've had a NCS, and he said my nerves were in perfect working order. I am also stopping my Wellbutrin to see of the twitches are being caused by it. Thank you for your post. I think there needs to be a "symptom list" somewhere on the first board to help out the new. You're an :angel:

I know exactly how frantic you are. I have symptoms of weakness in arms and legs, and weird cramps that come out of nowhere. I saw a Neurologist. He did Nerve conduction tests and told me that I have Nerve Damge in arms and legs, and signs were Lou Gherig's or ALS. He asked for 2 weeks to "study" my case. After this, He wanted 4 more weeks to "study". That is when my Daughter, a R.N., stepped in and said No Way. For 2 weeks my family was in grief. I got a new Neurologist to take my case. He put ALS on the back burner (His Words), until He ran some other tests. ALS has all but been ruled out. I do have some form of Muscular Disease, still not fully diagnosed. I am weak in my arms and especially my legs. Had many falls. Walk with a cane, now. However, I am at peace, knowing that all is being done to try and make a true diagnosis, without throwing out a death sentence before persuing all avenues.
Please get a second or third opinion, and I wish you all the best.

IT may be be but ALS is hard to diagnose, its a process of elimination... all other diseases are ruled out first, its very frustrating... hope for the best...

Marky1956- Your post just made me cry like a baby. I have also been having pins and needles, then that stopped. Then the muscle twitches started, after I started Wellbutrin. I was/am so scared of something like ALS. I am 32, with 2 small kids, and a wonderful hubby. I had an aunt die of ALS, so I know how bad it is. Your post has eased my fears for now. I still don't know what I have, but I have been praying for a sign to let me know that this is not ALS. I think your post was my sign. My Dr keeps telling me its not serious, but my mind says otherwise. I've had a NCS, and he said my nerves were in perfect working order. I am also stopping my Wellbutrin to see of the twitches are being caused by it. Thank you for your post. I think there needs to be a "symptom list" somewhere on the first board to help out the new. You're an :angel:
I've taken Wellbutrin for a long time and my dr. said its very unforgiving when it comes to anxiety. The anxiety could very well be causing the muscle twitching. After I started having muscle twitches and my primary care doctor ruled pretty much anything major out, I was convinced this was in my head. My psychiatrist put me on zoloft in addition to wellbutrin to control anxiety. At this point mind you I knew I was having anxiety attacks. I hope this helps. After taking the zoloft they've gone away to a large degree.

Hi deb,
I have been also suffering with the same/simular symptoms. You should keep a daily journal of symptoms becasue likley these symptoms are changing by very small amounts that you may not remember and this could help indicate a trend and help with a dx. Also befor you sink too much into despare about ALS or MS you really should look into Lyme. It is the fastest growing infectious disease and is known as the great ALS imitator. Has anyone tried an antibiotic such as Doxycyclene? Anyway see the following thread read the symptoms about the third post down.

Search on the healthboards for Lyme

I hope you can feel better soon!

I saw three doctors that were watching me get worse and worse but wanted to run endless tests that always came out normal or 'nearly normal' (some tests like liver were slightly out of spec but close enough), they had theories but would not treat until the blood work firmly diagnosed an illness. I was very frightened as I saw things get worse and worse and the only thing they wanted to do was give me pain meds or suppresants to ease the symptoms not fix the problem. Enough zombie drugs can make all the twitching go away but I was still weak. Luckily we found a Lyme aware Nurse Practitioner who started me on the antibiotics that saved my sanity and possibly more. I had no idea (and neither did any of my first three doctors that Lyme or other things like it could cause these symptoms.

Another thing that is useful is a good advocate. My wife finally after sitting on the side lines for three weeks of me seeing doctors, found her inner tiger and took charge. When it was just me talking I got this sort of reaction from the docs that I should 'Take it like a man' (they never actually said this but I think it was in their eyes.) I did not have the energy or the internal fight to argue with them. I think at least one of them after looking at my nearly normal blood work thought I was over dramatizing the symptoms. (Why they would think I would pull 80 bucks out of my wallet and give it to them so I could just complain to hear myself, I do not know.) The other mistake I made was to over think my symptoms. I tried to explain the exact nuances to the doc, not realizing they really were not really listening. When my wife started going with me into the exam room for the first time the doctor had a completely different personality then he had with me alone. She would cut off my long descriptions and basically said to the doc, "he has told you the symptoms, it is your job to fix him". She also insisted that if they did not know what it was to refer me to a specialist that might know. And asked things like "when is this going to happen?". Up and until this point the utter frustration and the flustered feelings I experienced was huge and at a time I had no energy or strength. Two of the doctors wanted to say fibromyagla or CFS (chronic fatigue syndrome) but they told me that they did not really believe this existed (most doctors do not). I volunteer in emergency services in my county and it was the county 911 coordinator who recommended I go and see this nurse practitioner. The Nurse Practitioner was the first to point out tick borne infections and how they look like fibromyalga, CFS, ALS, MS and others. And said a course of antibiotics may help determine if this could be it. It made a huge difference in my life. I took a while and I got better then worse then better (and still do). The other thing about this disease is how the symptoms will come and go and re-occur monthly. You women out there who may have this I am sure will have to convince a doc that it is not menstrual. Presumably they will not assume that about me (although I am sure some of them suspect it anyway). I am not out of the woods yet, a problem with doctors and 45 year old men is if you complain about anything it is probably your heart. "Get more exercise, my doctor said." Well heck before this started I hiked daily and am a scuba diver, pilot, swim weekly, and when I can travel to Hawaii (about 4 times a year) I body surf. Talk about taking the fat off! I bicycle (had to stop that too) and went to the fitness center every day. This last one I have started again to try and rebuild the muscles I have lost along with now swimming 3 days a week (indoor pool at the community center). I would ask how much more exercise should I have been doing? In their defense I had basically stopped all these activities for three months before I saw a doctor. But gee-wiz they could have asked. Anyway I was referred for a stress test, EKG, Echo, Cat Scan (I think my cat at home could have done a better job) all this was negative including the stress test before I could get referred to a neurologist. After all this testing is when my wife, god bless her, got really involved and started going with me into the exam room. I think this made the doctor really un-comfortable when he did a, hmm, very personal exam. Now I say great! Let these clown feel ‘uncomfortable’. I have felt ‘uncomfortable’ for years. Just having her there helped and when she found her voice things really started to happen. When I said it, it was whining when she said it they took action! If you have a mate or friend that can be in this role then get them. Mates I think are best because when exams or nudity come into there is just no problems. You will likely have to sign some sort of release paper to the health facility so they can legally talk to them but I say do it! But make sure she or he is the kind of person who will demand results and will ask questions! Another lesson I learned is what I momentarily thought were stupid questions my wife asked turned out to be very good questions to ask. I suspect that since men and women think differently having one from each category asking questions helps. This in my case really helped.

see
http://www.healthboards.com/boards/showthread.php?t=259463

http://www.healthboards.com/boards/showthread.php?t=477055

jeff001

Hello:
Thanks first to anyone who responds - I have become frantic in my search for what is causing these symptoms. First started with pain similar to toothache pain in both legs, Progressed to tremors in legs and pins and needles in hands and feet. Ringing in my ears when I lay down at night to go to sleep. Fasticulations all over my body. Legs feel very heavy especially when climbing stairs. Extreme fatigue no matter how much sleep I get. This has been going on for 9 months. After physical activity of any kind it takes days to recover my strength. Yesterday I was watching TV and had my feet up and noticed my toes on both feet moving slightly and I could feel my muscles sort of surging down my legs. I have been to a neurologist and my primary physician ordered an MRI. Neurologist said he saw no evidence of a nerve disease but to come back if I had trouble swallowing. Also can't seem to remember things or concentrate the way I was able to before all of these symptoms. I have had blood tests twice and there is no evidence of Lyme disease or anything else to explain the symptoms. My primary Dr is stumped. Does this sound like early ALS? :confused:

I don't know if anyone has mentioned this as I didn't read all the replys but most labs do not know how to test for Lyme; therefore, the results are often "negative". You need to have your blood sent to IgeneX in Palo Alto California or Bowen Lab. Also, Lyme is not diagnosed on lab tests alone. Many believe that Lyme is the causative factor for many illnesses these days - Lupus, CFS, ALS, MS ..........

All the best

Hi
Guys: I noticed a minor intermittent twitching in my left thumb over a year ago. About 6 months ago, I started twitching everywhere. I am a 46 year old, otherwise healthy female. I have twitching even in my tongue! My left shoulder/bicep seems 'heavy' although there is no pain. I have noticed a twitchy, odd sensation in my feet and lower legs lately- the same in my hands. My dr. has ordered a laundry list of neuro tests. I have no visible muscle weakness, no tripping, changes in handwriting etc. Does this sound familiar to anyone?

Please excuse me for just jumping in before I read all the posts. Ten years ago my Dad was losing weight and not looking well. We started going to all sorts of Drs., getting this test, and that, and there was no diagnosis. Near the end of his life, it appeared he had a stroke, and possibly subsequent ones. It was not until he passed away that he was diagnosed with ALS. I often wonder WHY? Why didn't someone catch it, or perhaps they did, as two days before his death he saw a Neurologist who put these pins in his legs and monitored a screen. He said it should be a flat line, but it was going crazy, up and down the screen. He did one leg, and my Dad sat there, just "out of it", and the Neur. said there was no need to continue. The only other things I can report as far as symptoms were that he had a lot of mucous, and difficulty bringing it up, felt like he was choking, and near the end, I could see the twitching, even as I held his hand while he passed. The nurses told me he was "gone", but I said "NO, I still feel his pulse and he's still twitching". They said that was normal for a few minutes, so I just held his hand until I felt no pulse and the twitching stopped.

At a time like that, you don't know what to do. In the ER, (after my Dad had fallen), the Dr. told me the best thing to do was let nature take it's course and to do no heroics. (He was 76)

Looking back, what did they miss? What did I miss? Could anything have been done?

I apologize if this is upsetting to anyone; this is the first message board I've found that actually dealth with ALS.

Does anyone know the latest treatment and outlook for the disease?

nightangel

I don't know if I'm editing correctly or not, but a friend of mine has Peripheral Neuropathy, with symptoms very much like ALS. She also has MS and Porphyria, which makes her condition very grave, but she's a fighter and a trooper and she doesn't give up. I hope none of you do either.

nightangel