Originally Posted by Evonne

This is going to be long, so I apologize in advance! I am a 34 year old woman. I have been healthy all of my life. In January of 2007, I had a partial hysterectomy. Within three months, I developed some strange symptoms that I will go into a little bit later. I was diagnosed with Fibromyalgia about a year and a half ago. At the time I was diagnosed, the Rheumatologist told me that I also had something called cogwheel rigidity and that it was most commonly associated with Parkinson's Disease. After seeing a Neurologist and a Movement Disorder Specialist, they both determined that I don't have PD. Let me tell you...that was a journey! At my last appointment with the MDS, I was told that I have a physiological tremor that is caused by the muscle weakness that is part of Fibromyalgia and that the tremor is increased by stress and anxiety.

I believe that Fibromyalgia exists, but in my gut, I don't believe that is what I am dealing with. I am going to describe some of my symptoms just to get and idea of whether or not others with Fibromyalgia experience what I experience. Here goes! When I wake up in the morning I am very stiff all over. My body aches. It stays that way throughout the whole day. The muscles in my neck and across the tops and back of my shoulders feel like rocks to the touch and the muscles on the left side of my back are also very tight. My muscles feel hard like I lift weights, but I don't. It causes me a lot of discomfort. When I move my head, I often hear a crackling sound. Sometimes I have the sensations of bubbles in my head...strange. Sometimes my head feels like a have a helmet of numbness on. It is odd. Whenever I move at all, there is a tremor. The tremor is increased with each repetitive motion. So, for example, it is really hard to climb stairs, do sit ups, leg lifts or arm lifts. Needless to say, my body fatigues very easily. I also have muscle twitches all over my body. When I lay in bed at the end of the night the twitches are really noticeable. It feels like my body is turning off. When my alarm goes off in the morning, I usually hit snooze once. During the time that I am laying there, my muscles begin to twitch again. It feels like my body is turning on. When I lay down in bed at night I have lights in my eyes that flash. It's almost as if there is lightning flashing in the room, but there isn't. Trust me, I have asked my husband if he can see lights flashing and he has laid there with his eyes open and not seen any lights flashing. I have also noticed lately that I am having some weird things going on with my right eye. It is like there is a spot towards the upper right of my eye that I can't see right out of. It is kind of grayish, I guess.

I am a type 1 diabetic(autoimmune) and my blood sugar levels are usually pretty good. My HBA1C is 7.2 which means that I am averaging around 170. Normal is 120. My control could be better, but it isn't terrible. I don't think my problems are related to my diabetes.

The tests that I have had are MRI and EMG. My MRI was good. The doctor said that there were some small spots, but he said that they were normal. He went on to tell me that the brain is similar to a face and some of us have freckles. My EMG was also fine. It detected my tremor, but the speed of the tremor isn't consistent with PD. It ruled out ALS and Stiff Person Syndrome. I have had all sorts of blood work and I was low in vitamin D and there was some test that showed positive for inflammation. No Lupus, no thyroid problems, no paraneoplastic syndrome. Basically, everything looks normal.

As a result of dealing with all of this health stuff, I have developed anxiety and depression. I recently started taking an antidepressant. At this point, I feel like a head case that the doctor's don't want to listen to anymore. The one that did listen had his office closed down because of hospital budget cuts. I had to find a new Neurologist and my first appointment with him is in November. Whatever is going on with me is real. If I could think my way into feeling good, I would! If I could wake up one day and just feel normal...I would be thrilled! But, things just keep getting worse and worse. I have told my husband more than once that my fear is that one day I might just collapse and die because nobody took me seriously!

Well, that's my story. Let me know what you think.

Evonne

Originally Posted by Evonne

This is going to be long, so I apologize in advance! I am a 34 year old woman. I have been healthy all of my life. In January of 2007, I had a partial hysterectomy. Within three months, I developed some strange symptoms that I will go into a little bit later. I was diagnosed with Fibromyalgia about a year and a half ago. At the time I was diagnosed, the Rheumatologist told me that I also had something called cogwheel rigidity and that it was most commonly associated with Parkinson's Disease. After seeing a Neurologist and a Movement Disorder Specialist, they both determined that I don't have PD. Let me tell you...that was a journey! At my last appointment with the MDS, I was told that I have a physiological tremor that is caused by the muscle weakness that is part of Fibromyalgia and that the tremor is increased by stress and anxiety.

I believe that Fibromyalgia exists, but in my gut, I don't believe that is what I am dealing with. I am going to describe some of my symptoms just to get and idea of whether or not others with Fibromyalgia experience what I experience. Here goes! When I wake up in the morning I am very stiff all over. My body aches. It stays that way throughout the whole day. The muscles in my neck and across the tops and back of my shoulders feel like rocks to the touch and the muscles on the left side of my back are also very tight. My muscles feel hard like I lift weights, but I don't. It causes me a lot of discomfort. When I move my head, I often hear a crackling sound. Sometimes I have the sensations of bubbles in my head...strange. Sometimes my head feels like a have a helmet of numbness on. It is odd. Whenever I move at all, there is a tremor. The tremor is increased with each repetitive motion. So, for example, it is really hard to climb stairs, do sit ups, leg lifts or arm lifts. Needless to say, my body fatigues very easily. I also have muscle twitches all over my body. When I lay in bed at the end of the night the twitches are really noticeable. It feels like my body is turning off. When my alarm goes off in the morning, I usually hit snooze once. During the time that I am laying there, my muscles begin to twitch again. It feels like my body is turning on. When I lay down in bed at night I have lights in my eyes that flash. It's almost as if there is lightning flashing in the room, but there isn't. Trust me, I have asked my husband if he can see lights flashing and he has laid there with his eyes open and not seen any lights flashing. I have also noticed lately that I am having some weird things going on with my right eye. It is like there is a spot towards the upper right of my eye that I can't see right out of. It is kind of grayish, I guess.

I am a type 1 diabetic(autoimmune) and my blood sugar levels are usually pretty good. My HBA1C is 7.2 which means that I am averaging around 170. Normal is 120. My control could be better, but it isn't terrible. I don't think my problems are related to my diabetes.

The tests that I have had are MRI and EMG. My MRI was good. The doctor said that there were some small spots, but he said that they were normal. He went on to tell me that the brain is similar to a face and some of us have freckles. My EMG was also fine. It detected my tremor, but the speed of the tremor isn't consistent with PD. It ruled out ALS and Stiff Person Syndrome. I have had all sorts of blood work and I was low in vitamin D and there was some test that showed positive for inflammation. No Lupus, no thyroid problems, no paraneoplastic syndrome. Basically, everything looks normal.
As a result of dealing with all of this health stuff, I have developed anxiety and depression. I recently started taking an antidepressant. At this point, I feel like a head case that the doctor's don't want to listen to anymore. The one that did listen had his office closed down because of hospital budget cuts. I had to find a new Neurologist and my first appointment with him is in November. Whatever is going on with me is real. If I could think my way into feeling good, I would! If I could wake up one day and just feel normal...I would be thrilled! But, things just keep getting worse and worse. I have told my husband more than once that my fear is that one day I might just collapse and die because nobody took me seriously!

Well, that's my story. Let me know what you think.

Evonne

Originally Posted by Evonne

This is going to be long, so I apologize in advance! I am a 34 year old woman. I have been healthy all of my life. In January of 2007, I had a partial hysterectomy. Within three months, I developed some strange symptoms that I will go into a little bit later. I was diagnosed with Fibromyalgia about a year and a half ago. At the time I was diagnosed, the Rheumatologist told me that I also had something called cogwheel rigidity and that it was most commonly associated with Parkinson's Disease. After seeing a Neurologist and a Movement Disorder Specialist, they both determined that I don't have PD. Let me tell you...that was a journey! At my last appointment with the MDS, I was told that I have a physiological tremor that is caused by the muscle weakness that is part of Fibromyalgia and that the tremor is increased by stress and anxiety.

I believe that Fibromyalgia exists, but in my gut, I don't believe that is what I am dealing with. I am going to describe some of my symptoms just to get and idea of whether or not others with Fibromyalgia experience what I experience. Here goes! When I wake up in the morning I am very stiff all over. My body aches. It stays that way throughout the whole day. The muscles in my neck and across the tops and back of my shoulders feel like rocks to the touch and the muscles on the left side of my back are also very tight. My muscles feel hard like I lift weights, but I don't. It causes me a lot of discomfort. When I move my head, I often hear a crackling sound. Sometimes I have the sensations of bubbles in my head...strange. Sometimes my head feels like a have a helmet of numbness on. It is odd. Whenever I move at all, there is a tremor. The tremor is increased with each repetitive motion. So, for example, it is really hard to climb stairs, do sit ups, leg lifts or arm lifts. Needless to say, my body fatigues very easily. I also have muscle twitches all over my body. When I lay in bed at the end of the night the twitches are really noticeable. It feels like my body is turning off. When my alarm goes off in the morning, I usually hit snooze once. During the time that I am laying there, my muscles begin to twitch again. It feels like my body is turning on. When I lay down in bed at night I have lights in my eyes that flash. It's almost as if there is lightning flashing in the room, but there isn't. Trust me, I have asked my husband if he can see lights flashing and he has laid there with his eyes open and not seen any lights flashing. I have also noticed lately that I am having some weird things going on with my right eye. It is like there is a spot towards the upper right of my eye that I can't see right out of. It is kind of grayish, I guess.

I am a type 1 diabetic(autoimmune) and my blood sugar levels are usually pretty good. My HBA1C is 7.2 which means that I am averaging around 170. Normal is 120. My control could be better, but it isn't terrible. I don't think my problems are related to my diabetes.

The tests that I have had are MRI and EMG. My MRI was good. The doctor said that there were some small spots, but he said that they were normal. He went on to tell me that the brain is similar to a face and some of us have freckles. My EMG was also fine. It detected my tremor, but the speed of the tremor isn't consistent with PD. It ruled out ALS and Stiff Person Syndrome. I have had all sorts of blood work and I was low in vitamin D and there was some test that showed positive for inflammation. No Lupus, no thyroid problems, no paraneoplastic syndrome. Basically, everything looks normal.

As a result of dealing with all of this health stuff, I have developed anxiety and depression. I recently started taking an antidepressant. At this point, I feel like a head case that the doctor's don't want to listen to anymore. The one that did listen had his office closed down because of hospital budget cuts. I had to find a new Neurologist and my first appointment with him is in November. Whatever is going on with me is real. If I could think my way into feeling good, I would! If I could wake up one day and just feel normal...I would be thrilled! But, things just keep getting worse and worse. I have told my husband more than once that my fear is that one day I might just collapse and die because nobody took me seriously!

Well, that's my story. Let me know what you think.

Evonne

Originally Posted by Evonne

Thanks for your empathy. I am sorry to hear that you are suffering as well. I have a lot of fasciculations myself, but my EMG didn't show anything rare like ALS. The fasciculations are a nuisance for sure. I hope that you get to feeling better soon.

As for me, I have been posting in the PD forum, because I think that most of my symptoms are most like PD. I saw two doctors within the last week and a half that both felt that my diagnosis of Fibro was incorrect. Mainly based on the tremor and cogwheel rigidity that I have. Those things are not consistent with Fibro. So, for the second time in the past year, I have gone back on PD meds. This time, the doctor gave me the best medicine there is for PD...the "Gold Standard". I have only been taking one pill a day and it is in the early morning. I have noticed that I have been less shaky and that my stiffness seems to improve when I am on the medication. It is as if a calm just sort of comes over me and the internal shakiness that I have described since the beginning of this seems to go away. By mid afternoon, my symptoms seem to get a little worse again. My thought is that gradually the doctor will increase the dose up to multiple times a day until we see more improvement. If the meds don't seem to help much, then it means that I probably don't have PD and the search for what is really going on inside of my body will continue. I am not going to give up until the right doctor finds out what is wrong with me. Hopefully, the answer will come sooner rather than later.

Thanks for your response...and hang in there!