I [posted in a thread below about my concerns about ALS. I had my MRI and the brain one was perfectly normal. The neck MRI showed a bulging disc around my 5-6 vertabrae. My doctor is now sending me for an EMG, and then on to a neurosurgeon or neurologist depending on the outcome of the EMG. I have slight weakness(as diagnoised by my doc) in my right arm and muscle jerks about 30 times a day. It is one jerk, like in my shoulder or hand and then stops til later I have another one. I do have some shaking in my right hand. Thankfully the pins and needles affect in my legs and toes is almost gone. The jerking is worse at night. My bed has become a torture chamber because it all starts in when I lay down. My right arm also aches at times. I am scared to death I have ALS and it is absorbing all my time and thoughts. I know that isn't helping but that's the way it is. Does this sound like ALS or am going crazy? Thank you so much for all your replies and concern. It means alot.
help!
- Status
rbtro
Member
- Joined
- Aug 2, 2006
- Messages
- 27
- Reason
- PALS
- Country
- US
- State
- Maryland
- City
- Arnold
Jane,
I am no expert, but I feel you are jumping the gun here. ALS is a tough diagnosis. I have just been recently diagnosed with suspected ALS at the Johns Hopkins Hospital. The doctor explained that there is no definitive test for ALS it is a diagnosis by exclusion. I start in Jan. 2003, with not being able to turn my head and pain in my right shoulder. I lost feeling in the thumb. index and middle finger of both hands. I had difficulty holding things. My MRI showed 4bulging herniated discs between C3 to C7. In March I had surgery to decompress the cervical spine. Cadaver bone was placed between the vertabrae and plate and screws were used to fuse the cervical spine. After surgery the pain was gone and I had full use of my hands. I thought this was successful. I still had a problem with my right leg. I had what I thought was foot drop. I fell a couple of times cracking my head on the concrete. My primary care physcian sent me back to the surgeon because he didn't like the way I was walking. The surgeon sent me to a Neurosurgeon for a second opinion. Looking at the MRI showed stenosis still compressing the spinal cord. He suggested a laminectomy to relieve this compression. This should improve my gait. I had the surgery in September. Physical therapy and exercise, but no improvement to my gait. I could walk with a cane. I fell a few more times and finally gave up on the cane and got a rolling walker. This was great I could get around with it and not fall down. I was riding my recumbent bike for 30 minutes every day. Trying to build my leg strength. I went back to physical therapy in August of 2005 for I was starting to fall even with the walker. I was exercising and trying to strengthen the core muscles. In November the therapist said he didn't think I could get better. That it wasn't for a lack of trying. I told him I agreed and actually I felt I was getting worse. I went back to the surgeon and he ran another complete set of MRIs brain to tail. Nothing to explain my symtoms. He sent me to the Neurosurgeon and a Neurologist. The Neurosurgeon agreed that the spinal chord was decompressed and I shouldn't be having these symptoms. The Neurologist ran an EMG and NCV. He said both showed a diminished signal. He set up a spinal tap and checked the CSF. He then diagnosed CIDP. I had IVIG therapy in December. The gentleman, I met during this five day infusion, said how lucky I was to have found this neurologist. He told me how he thought that he had ALS before finding this neuro. He had been in a wheelchair and now was walking with a cane. I had hope. Two more five day infusions and I was continuing to weaken. My neuro ran another EMG/NCV and sent me for a muscle biopsy. The thought was I might have Polymyositis. Started me on high dose Prednisone (60mg/day). The results came back and he said he wanted a second opinion before making a diagnosis. Thats when he sent me to Johns Hopkins which is an ALS center. Sorry for the long story but I was just trying to show you that you are a bit premature in jumping into this idea of ALS. I am still hoping to find that I have another MND. I think PMA might be my preference. I have continued to weaken and my hands and legs get heavier every day. But the Lord wakes me up and I go about living as best I can. Things are starting to come together. I have my new powerchair and a van to haul it. The lower level is being finished. I have tremendous support from friends and family as well as this forum. Life is good. So please don't get down ALS diagnosis is a long journey. And I will pray that you and I will live long and prosper. May god bless and keep you..
Rich
I am no expert, but I feel you are jumping the gun here. ALS is a tough diagnosis. I have just been recently diagnosed with suspected ALS at the Johns Hopkins Hospital. The doctor explained that there is no definitive test for ALS it is a diagnosis by exclusion. I start in Jan. 2003, with not being able to turn my head and pain in my right shoulder. I lost feeling in the thumb. index and middle finger of both hands. I had difficulty holding things. My MRI showed 4bulging herniated discs between C3 to C7. In March I had surgery to decompress the cervical spine. Cadaver bone was placed between the vertabrae and plate and screws were used to fuse the cervical spine. After surgery the pain was gone and I had full use of my hands. I thought this was successful. I still had a problem with my right leg. I had what I thought was foot drop. I fell a couple of times cracking my head on the concrete. My primary care physcian sent me back to the surgeon because he didn't like the way I was walking. The surgeon sent me to a Neurosurgeon for a second opinion. Looking at the MRI showed stenosis still compressing the spinal cord. He suggested a laminectomy to relieve this compression. This should improve my gait. I had the surgery in September. Physical therapy and exercise, but no improvement to my gait. I could walk with a cane. I fell a few more times and finally gave up on the cane and got a rolling walker. This was great I could get around with it and not fall down. I was riding my recumbent bike for 30 minutes every day. Trying to build my leg strength. I went back to physical therapy in August of 2005 for I was starting to fall even with the walker. I was exercising and trying to strengthen the core muscles. In November the therapist said he didn't think I could get better. That it wasn't for a lack of trying. I told him I agreed and actually I felt I was getting worse. I went back to the surgeon and he ran another complete set of MRIs brain to tail. Nothing to explain my symtoms. He sent me to the Neurosurgeon and a Neurologist. The Neurosurgeon agreed that the spinal chord was decompressed and I shouldn't be having these symptoms. The Neurologist ran an EMG and NCV. He said both showed a diminished signal. He set up a spinal tap and checked the CSF. He then diagnosed CIDP. I had IVIG therapy in December. The gentleman, I met during this five day infusion, said how lucky I was to have found this neurologist. He told me how he thought that he had ALS before finding this neuro. He had been in a wheelchair and now was walking with a cane. I had hope. Two more five day infusions and I was continuing to weaken. My neuro ran another EMG/NCV and sent me for a muscle biopsy. The thought was I might have Polymyositis. Started me on high dose Prednisone (60mg/day). The results came back and he said he wanted a second opinion before making a diagnosis. Thats when he sent me to Johns Hopkins which is an ALS center. Sorry for the long story but I was just trying to show you that you are a bit premature in jumping into this idea of ALS. I am still hoping to find that I have another MND. I think PMA might be my preference. I have continued to weaken and my hands and legs get heavier every day. But the Lord wakes me up and I go about living as best I can. Things are starting to come together. I have my new powerchair and a van to haul it. The lower level is being finished. I have tremendous support from friends and family as well as this forum. Life is good. So please don't get down ALS diagnosis is a long journey. And I will pray that you and I will live long and prosper. May god bless and keep you..
Rich
Al
Moderator emeritus
- Joined
- May 25, 2004
- Messages
- 8,083
- Reason
- PALS
- Diagnosis
- 10/2003
- Country
- CA
- State
- On
- City
- NW of Toronto
Hi Jane. I agree with Rich. I think you are a bit premature in your fears about ALS. There are quite a few things that could be wrong with you and most are nowhere near as bad as ALS. Wait for all the test results and even then it is just an educated guess as there is no one test for ALS although a Canadian researcher has shown promise with a new type of blood test. Take care. AL.
Thanks so much for your replies. I feel like a big baby since I have only been dealing with this a couple months and some of you have been dealing with it for years. I guess I would have written it off as a pinched nerve if the muscle twitching hadn't started and then the pins and needles sensations in my legs began. My doctor threw out several scenerios including ALS, virus or "another neurological problem", or a neuropathy. Guess I will wait and see and try to keep busy. Fortunately I have a strong faith and will leave it up to God. Our sermon this morning was on the power of prayer and I will DIFENITELY be praying for all of you!
BWk
Distinguished member
- Joined
- Jun 6, 2006
- Messages
- 113
- Reason
- PALS
- Country
- grant
- State
- new mexico
- City
- silver city
Jane,
My brother has a disc problem and has numbness in his left arm and twitching sometimes, [bulging] was found in the disc at the 5th vertebra. He shows NO signs of als otherwise and even though I have it, there is no family history of als to think it could be als in him. Makes him a little nervous of course. Just wait and see what transpires with yourself before getting to fearfull about als. The Lord will give you strength! Barry
My brother has a disc problem and has numbness in his left arm and twitching sometimes, [bulging] was found in the disc at the 5th vertebra. He shows NO signs of als otherwise and even though I have it, there is no family history of als to think it could be als in him. Makes him a little nervous of course. Just wait and see what transpires with yourself before getting to fearfull about als. The Lord will give you strength! Barry
MtPockets
Very helpful member
- Joined
- Jun 1, 2006
- Messages
- 1,544
- Reason
- PALS
- Diagnosis
- 05/2006
- Country
- US
- State
- Ms
- City
- Gulfport
welcome to the forum
Welcome to the forum, but lets hope your diagnosis is not ALS. I've gone the similar route as Rich and feel like it's way too early to jump on the ALS bandwagon. There are just so many other things it could be besides ALS.
My neurologist that I finally got to after 2 other docs said they thought I had ALS, said right up front let's not jump to any conclusions until we rule out everything else.
There may be 50 other things it COULD be besides ALS. The only way to know for sure is run ALL the tests and then maybe get a second opinion. Think and pray for God to give your doctors direction and find out for sure what you are facing before accepting the worse it could be.
If it turns out to be ALS God will give you the strength to handle your progression through the disease. There are many of us on this forum who trust God to let us make it one day at a time. That's all I can ask. Without God's help I would have given up long ago. He is faithful, He will not give you more than you can bear, without giving you the strength to bear it. And He is with us all the way, everyday. Thank God for His mercy and loving kindness, it is new every morning .
May God Bless
Big AL
:smile:
Welcome to the forum, but lets hope your diagnosis is not ALS. I've gone the similar route as Rich and feel like it's way too early to jump on the ALS bandwagon. There are just so many other things it could be besides ALS.
My neurologist that I finally got to after 2 other docs said they thought I had ALS, said right up front let's not jump to any conclusions until we rule out everything else.
There may be 50 other things it COULD be besides ALS. The only way to know for sure is run ALL the tests and then maybe get a second opinion. Think and pray for God to give your doctors direction and find out for sure what you are facing before accepting the worse it could be.
If it turns out to be ALS God will give you the strength to handle your progression through the disease. There are many of us on this forum who trust God to let us make it one day at a time. That's all I can ask. Without God's help I would have given up long ago. He is faithful, He will not give you more than you can bear, without giving you the strength to bear it. And He is with us all the way, everyday. Thank God for His mercy and loving kindness, it is new every morning .
May God Bless
Big AL
:smile:
- Status
