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Neurology (Expert Forum)
Many neuro problems
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury.
Many neuro problems
by Mr_O, Nov 09, 2005 12:00AM
This all started back in December 04, almost two months after a disectomy back surgery. I had been getting along just fine when all of a sudden I started feeling back pains as if my disc was once again pressing into my spinal cord. This continued on however the pain was different. I was getting burning in my feet and thigh muscles along with sharp nerve pains. My upper thigh muscles also pulled very tight making it hard to walk. I also started experiencing weakness in my leg muscles around this time. I had a MRI of my lumbar back in middle December and it showed just a small bulge in the middle of the disc. My doctor said it wasn’t too terribly bad – yet, It felt like it. Things continued like this until the first week in February 05. Suddenly, I started getting nerve pains in both hands at the same time. The middle part of my back also felt tight in between the shoulder blades. I had been taking it completely easy so I thought there is just no way I could have herniated another disc! I had a MRI done of my middle spine and cervical spine. Nothing showed up. Yet, I was having bad pain in my fingers and even in my shoulders.
My head was the last part of my body to not be effected but that didn’t last long. At the beginning of April, I started feeling just “wrong.” I had trouble swallowing, I had increased saliva, I started getting floaters in my eyes, my muscles started twitching like crazy, I had visible tremors, my legs and fingers and other parts of my body jerked on their own, I didn’t want to eat, I started getting headaches, tight neck muscles, altered vision and dizziness. I also started experiencing arm weakness. At this point I came to the realization that something was wrong. I went to my GP who sent me to a neurologist that wasn’t helpful at all. He told me that he didn’t know what it was, but he “thought” it would go away. He said the only test he could offer me was an EMG, but he didn’t think it would be helpful because these things need to be tested for later. Well, I had the EMG, and it was done on my right arm and leg. It all came back negative. I also got a MRI of my brain around this time and it as well came back negative. So five months into this thing, I was feeling terrible and had no answers. The neurologist told me to come back in a month and also told me that he had no answers for me. I didn’t accept this. My GP began the typical “you’re probably stressed” routine with me and started me on anti depressants. They didn’t work and I just felt that both my GP and the neurologist weren’t taking me seriously so I decided to switch doctors. Meanwhile, the symptoms were pretty much the same however there was some waxing and waning. The swallowing/Saliva issue stopped and I felt a “little” stronger in some muscles. However, some new symptoms popped up such as cracking joints and a bloated stomach. You name the joint; it cracks in my body. Also, when I bend my head down, I feel a buzzing that usually comes from the bottom of my spine.
It was now June and I started seeing a new GP who believed it was best that I see another neurologist. Again, I had terrible luck. I know that it makes me seem like I am the one with the problem, however, I can assure you this is not the case. This new neuro only saw me for only a few minutes and asked me “If I would accept any answer other than there is nothing wrong with my nerves.” I was literally appalled at my care from her. I thought I was going to break down in her office right then and there – I needed help but nobody would help me. It was now July and I went back to my GP feeling much of the same, but this time with a few more symptoms. I was now having trouble sleeping. I have always been a nice sound sleeper but I couldn’t get any sleep at all. My doctor wanted me to take a sleep study, and much to my disappointment and objecting, thought I had had a “thorough” neuro work up and wouldn’t send me to another neurologist. I had my sleep study done and it showed I had sleep apnea. My GP then had me get one of those C-Pap machines and stated that I should start to feel better, for he thought I had fibro and that sleep apnea causes fibro. Well of course, the C-Pap machine did nothing – just like I thought.
My next appointment was in early Oct. where I really opened up and explained to him that what is going on with me is a neurological concern, and I really need help in that direction. I also stated that I want a Lyme test because those conditions come close to mimicking what I’m experiencing. I would say that I’m really close to Lyme, however, I live in Nebraska and we only have a few reported cases. Plus, I can’t remember the last time I got bitten by a tick; it’s been so long ago. I have also had my Thyroid tested for, and I have had issues with it years before this. During this time, it has constantly fluctuated and my synthroid medication has continually been increased or decreased. I’ve also had my B12 levels come back normal.
I know I have a lot of text here, but I am just trying to be helpful. Though some things wax and wane, if I were to describe my worse symptoms they would be: Tight muscles. My muscles are so tight in my back, (low back especially) that it feels like I am in concrete. Cracking Joints: Almost every joint in my body cracks now. Weakness. It doesn’t take long for me to feel like its time to lay down. Nerve pain. Believe me, this thing is painful. Some of the shooting nerve pains I have gotten stop me in my tracks. Sensory issues. Sometimes my back feels hot or cold when its not appropriate. I’ve also had anxiety attacks where my heart just races and I feel all panicky. I never had anything like this happen to me until this condition struck me. This all has been going on for almost one year now.
I have been looking at this board for a while now and thought that I would see if I could get any help. What does this look like to you? What tests should I have done that I haven’t had done already? Any help would be appreciated. This thing really effects my life and I just want to have a dx so I can get some sort of treatment and get on with life. I am not going to stop until I get help, even if I have to go out of town to find more qualified people. Thanks again for your time!
Ken
My head was the last part of my body to not be effected but that didn’t last long. At the beginning of April, I started feeling just “wrong.” I had trouble swallowing, I had increased saliva, I started getting floaters in my eyes, my muscles started twitching like crazy, I had visible tremors, my legs and fingers and other parts of my body jerked on their own, I didn’t want to eat, I started getting headaches, tight neck muscles, altered vision and dizziness. I also started experiencing arm weakness. At this point I came to the realization that something was wrong. I went to my GP who sent me to a neurologist that wasn’t helpful at all. He told me that he didn’t know what it was, but he “thought” it would go away. He said the only test he could offer me was an EMG, but he didn’t think it would be helpful because these things need to be tested for later. Well, I had the EMG, and it was done on my right arm and leg. It all came back negative. I also got a MRI of my brain around this time and it as well came back negative. So five months into this thing, I was feeling terrible and had no answers. The neurologist told me to come back in a month and also told me that he had no answers for me. I didn’t accept this. My GP began the typical “you’re probably stressed” routine with me and started me on anti depressants. They didn’t work and I just felt that both my GP and the neurologist weren’t taking me seriously so I decided to switch doctors. Meanwhile, the symptoms were pretty much the same however there was some waxing and waning. The swallowing/Saliva issue stopped and I felt a “little” stronger in some muscles. However, some new symptoms popped up such as cracking joints and a bloated stomach. You name the joint; it cracks in my body. Also, when I bend my head down, I feel a buzzing that usually comes from the bottom of my spine.
It was now June and I started seeing a new GP who believed it was best that I see another neurologist. Again, I had terrible luck. I know that it makes me seem like I am the one with the problem, however, I can assure you this is not the case. This new neuro only saw me for only a few minutes and asked me “If I would accept any answer other than there is nothing wrong with my nerves.” I was literally appalled at my care from her. I thought I was going to break down in her office right then and there – I needed help but nobody would help me. It was now July and I went back to my GP feeling much of the same, but this time with a few more symptoms. I was now having trouble sleeping. I have always been a nice sound sleeper but I couldn’t get any sleep at all. My doctor wanted me to take a sleep study, and much to my disappointment and objecting, thought I had had a “thorough” neuro work up and wouldn’t send me to another neurologist. I had my sleep study done and it showed I had sleep apnea. My GP then had me get one of those C-Pap machines and stated that I should start to feel better, for he thought I had fibro and that sleep apnea causes fibro. Well of course, the C-Pap machine did nothing – just like I thought.
My next appointment was in early Oct. where I really opened up and explained to him that what is going on with me is a neurological concern, and I really need help in that direction. I also stated that I want a Lyme test because those conditions come close to mimicking what I’m experiencing. I would say that I’m really close to Lyme, however, I live in Nebraska and we only have a few reported cases. Plus, I can’t remember the last time I got bitten by a tick; it’s been so long ago. I have also had my Thyroid tested for, and I have had issues with it years before this. During this time, it has constantly fluctuated and my synthroid medication has continually been increased or decreased. I’ve also had my B12 levels come back normal.
I know I have a lot of text here, but I am just trying to be helpful. Though some things wax and wane, if I were to describe my worse symptoms they would be: Tight muscles. My muscles are so tight in my back, (low back especially) that it feels like I am in concrete. Cracking Joints: Almost every joint in my body cracks now. Weakness. It doesn’t take long for me to feel like its time to lay down. Nerve pain. Believe me, this thing is painful. Some of the shooting nerve pains I have gotten stop me in my tracks. Sensory issues. Sometimes my back feels hot or cold when its not appropriate. I’ve also had anxiety attacks where my heart just races and I feel all panicky. I never had anything like this happen to me until this condition struck me. This all has been going on for almost one year now.
I have been looking at this board for a while now and thought that I would see if I could get any help. What does this look like to you? What tests should I have done that I haven’t had done already? Any help would be appreciated. This thing really effects my life and I just want to have a dx so I can get some sort of treatment and get on with life. I am not going to stop until I get help, even if I have to go out of town to find more qualified people. Thanks again for your time!
Ken
Doctor's Answer
by CCF-Neuro-M.D.-PW, Nov 13, 2005 12:00AM
The relatively normal MRIs suggest that a lot of the postop pain may be from muscle spasm and muscle/ligament problems rather than disc or spinal cord pain. Unfortunately surgery does not help this pain.
Sometimes, postop weakness and swallowing difficulties can be from an immune attack on the nerve called guillan barre syndrome, this usually resolves after 2-3 months though
Another possibility is stiff person syndrome - usually manifested by spasms of the trunk muscles, this can be tested for by antibody tests, spinal fluid analysis and by a good neuromuscular assessment.
The effect of any medications and any alcohol you take on a chronic basis needs to be looked into carefully too to evaluate for side effects. Although it does not sound liek Lyme, there are come rare metabolic muscle disease that can result in muscles pain after exercise, blood tests such as CK or a muscle biopsy are sometimes use ful test.
Sometimes, postop weakness and swallowing difficulties can be from an immune attack on the nerve called guillan barre syndrome, this usually resolves after 2-3 months though
Another possibility is stiff person syndrome - usually manifested by spasms of the trunk muscles, this can be tested for by antibody tests, spinal fluid analysis and by a good neuromuscular assessment.
The effect of any medications and any alcohol you take on a chronic basis needs to be looked into carefully too to evaluate for side effects. Although it does not sound liek Lyme, there are come rare metabolic muscle disease that can result in muscles pain after exercise, blood tests such as CK or a muscle biopsy are sometimes use ful test.
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Good luck
Tuesday night my arms started to feel weak exactly like if I had done some bicep curls.
Wednesday my arms still felt weak, so I made a Dr.'s appointment.
Thursday, arms are still weak, Dr. says it's probably muscle fatigue.
Friday, leave work by 11:30am, wife has to pick me up because I have a migraine so bad that I cannot see straight.
Saturday, still have the headache, a lot of pressure, reduced peripheral vision, etc... and my hands are weak and clumsy.
Sunday, still have the headache, etc... hands are still clumsy.
Monday, go to Dr. again, am scheduled for an MRI this afternoon, and appointment with Neurologist on Thursday.
This is all very scary. I have had migraines before, but never had any of this clumsiness in my hands. It took two tries each to tie my shoes this morning. It's like my hands don't work fast enough. I am reading on the Internet about all of these terrible things that I probably have. ALS, MS, Parkinson's, etc... I am 31 and up until last Tuesday I felt great. I have a wife, and two very little girls, and I really scared. Sunday my wife and daughters went to the in-laws house and I just broke down and cried for an hour after reading about ALS and MS.
I don't have a history of ALS, MS, or Parkinson's in my family on any side. My father has been extremely unhealthy, but had never had any neurological problems. I am just praying at this point that I have a pinched nerve, or even if I have RSI or carpal tunnel I would consider myself lucky.
Nikki16
I found out last night what is causing my issues. It is not MS, ALS, or Parkinson's as I feared. It happens to be the one thing that never occurred to me for some reason.
The MRI found a spot about the size of a quarter on the medulla oblongata. I am going to see a neurologist tomorrow afternoon, and then I will probably be looking for a neurosurgeon.
It's not possible to tell what this spot is yet. I can't even speculate at this point, but I know the noticable symptoms started last Tuesday 11/8. Hopefully the neurologist will be able to tell me more tomorrow.
My thoughts and prayers are with all of you who also suffer.
Jim
I agree with the doctor suggestions. I would make a list of all the medications that you have taken up to one year prior to the onset of your symptoms. There are many drugs that cause exactly the same symptoms that you have.
For instance, the quinolone antibiotics cause in some people (and in everyone for large doses) absolutely all the symptoms that you relate.
If you had taken such a medicine in the past, you might consider having a look at:
www.fluoroquinolones.org
www.fqresearch.org
and browse through the symptoms.
The bad news is that some of the most debilitating neurological and joint lesions caused by this antibiotics are in some cases irreversible, as the new edition of the package inserts states clearly.