I do not know how long I have been a member here, but I never introduced myself initially. I am not much of a chatter. I read while my mind is clear, and move on. I ask questions of course when I can't find the information or when my mind can't comprehend what I have been reading. HA, if anyone knows that I guess that would be you all. So I guess today I am in the mood to tell ya about me. Hopefully it isn't to long for ya...
I was only recently diagnosed in november of 2015. In 2014 I lost feeling in my right arm. Well I am not a person to go to the doctor for everything. Gave it a day and it didn't go away. I hit google and decided I must have just pinched a nerve by how I was sitting while on the computer. I said well I will go and get in a hot bath. Ewwww the pain when I was in that tub, ewwww the pain when I got out. I then told my husband I got a problem and something is really wrong. I hit google again this time to see what was triggered by heat. Each time I googled I would see Multiple Sclerosis. I had a friend who had MS, and I kept thinking, no no no, can't be. I started reading about it, and I could put a check mark by all types of symptoms for the disease. That had me worried and depressed.
I ended up going to the doctor, he convinced me I didn't have MS, and to come back for a nerve study. I did that, and the nerve study showed I had neuropathy, doc put me on gabapentin at a low dosage. It helped but only took the edge off. He increased it, and it continued to help. He sent me to a neuro. Well that neuro sent me for a MRI. The radiologist marked 5 non specific on my brain. That neuro said I didn't show anything that looked like MS. That neuro didn't even look at the images, just the report from the radiologist.
In the meantime I went back to my regular doctor. It spread down to my toes on my right side. It was now on the right side of my face. Pain in my back. He did an ultrasound on my back. Gave me a steroid injection at that time. Noticed something on my back, but wouldn't say what, but he then thought it was rheumatoid. So I go to a rheumatologist. Rheumatologist did x-rays on my hands, hip, shoulder, feet. Did more blood work. Get a phone call that I had a high RA factor to come back in. I did this, I told the rheumatologist that I believe if I have rheumatoid that I have MS also, cause it is split right down the pain and problems are split right down the middle. He said that didn't sound like rheumatoid. I told him about the neuro that I had already been seeing. He then remembered a neurologist that he went to school with, who specialized in Multiple Sclerosis. He recommended me going to see him. So of course I had my present neuro to make the recommendation.
Since I had one mri in 2014 on my brain and neck. I had to wait an entire year before having another MRI. I took the images to the new neuro, he said the images were poor, but the radiologist missed several lesions. He said it looks everything like MS.
By this time my speech was slurring, my cognitive was out of wack. My spasms were crazy. I was in serious pain. The new neuro upped my gabapentin, put me on baclofen, and also gave me tramadol. Over the course of the time we had to wait for insurance to finally approve. My symptoms kept getting worse.
Finally I had the new MRI, 10 lesions on my brain. Several lesions on my spinal cord. He then started me on copaxone. He also noticed that I have had a long history of symptoms. One of my eyes looks lazy, small. That started every bit of 20 years ago. I was not born like that. It continues to get worse. He believes that was the start. I also had a small case of "bells palsy" 14 years ago. The new neuro says that was not bells palsy cause I had numbness. Actually the bells started with me thinking I hadn't rinsed out a cup and it still contained soap in it. My tongue started to go numb, and over the course of several days my entire right side of my face went numb. It all makes sense now since my right side is my main side of issue today.
So sorry this is so long. I just know if anyone gets it, and can relate it would be you all.
Anywho the copaxone did not work for me. At first I had some difficulty almost as it knocked me out on the floor and a major zombie like. That went away. The injections got easier. Then after 4 months the site reactions started to really get crazy bad. First night on copaxone I wet the bed. I didn't do that again for awhile. Then I started wetting the bed about the same time the reactions started. Then I started defecating on myself. I called the doc and said I don't care what you do to me I am not taking this mess anymore, haha. They agreed but they thought I needed to come in.
Well in the meantime I had an "accidental" MRI. Oh me my neuro's office scheduled the wrong MRI well and no one realized it till after I had the MRI besides me... anywho long story short on that one. The "accidental" mri showed a new lesion, only 3 months after starting the copaxone. So the doc totally agreed I needed to switch meds.
I go back in August to discuss the new meds. She gave me several options. Believe I have it narrowed down to Avonex. I don't like the idea of shooting it into your muslce, but considering all the others, to me it is the least scary. I am a major anti gmo, anti synthetic, blah blah. I would actually prefer to be on no meds cause I don't believe I am in relapsing remitting. I honestly believe I am already in secondary. My right side is still numb to this day. I have not got back any of the feeling, and I keep slowly getting worse. I sleep so much, and right now I want to go back to sleep and I slept every bit of 12 to 13 hours last night. I am in constant pain. Blah, ya know the scoop no need for me to dwell on it.
Blah I think these kind of places are good. People need people. I read often, sorry i do not comment a lot. Know though I do read the post. I am lurking in the background watching.
I was only recently diagnosed in november of 2015. In 2014 I lost feeling in my right arm. Well I am not a person to go to the doctor for everything. Gave it a day and it didn't go away. I hit google and decided I must have just pinched a nerve by how I was sitting while on the computer. I said well I will go and get in a hot bath. Ewwww the pain when I was in that tub, ewwww the pain when I got out. I then told my husband I got a problem and something is really wrong. I hit google again this time to see what was triggered by heat. Each time I googled I would see Multiple Sclerosis. I had a friend who had MS, and I kept thinking, no no no, can't be. I started reading about it, and I could put a check mark by all types of symptoms for the disease. That had me worried and depressed.
I ended up going to the doctor, he convinced me I didn't have MS, and to come back for a nerve study. I did that, and the nerve study showed I had neuropathy, doc put me on gabapentin at a low dosage. It helped but only took the edge off. He increased it, and it continued to help. He sent me to a neuro. Well that neuro sent me for a MRI. The radiologist marked 5 non specific on my brain. That neuro said I didn't show anything that looked like MS. That neuro didn't even look at the images, just the report from the radiologist.
In the meantime I went back to my regular doctor. It spread down to my toes on my right side. It was now on the right side of my face. Pain in my back. He did an ultrasound on my back. Gave me a steroid injection at that time. Noticed something on my back, but wouldn't say what, but he then thought it was rheumatoid. So I go to a rheumatologist. Rheumatologist did x-rays on my hands, hip, shoulder, feet. Did more blood work. Get a phone call that I had a high RA factor to come back in. I did this, I told the rheumatologist that I believe if I have rheumatoid that I have MS also, cause it is split right down the pain and problems are split right down the middle. He said that didn't sound like rheumatoid. I told him about the neuro that I had already been seeing. He then remembered a neurologist that he went to school with, who specialized in Multiple Sclerosis. He recommended me going to see him. So of course I had my present neuro to make the recommendation.
Since I had one mri in 2014 on my brain and neck. I had to wait an entire year before having another MRI. I took the images to the new neuro, he said the images were poor, but the radiologist missed several lesions. He said it looks everything like MS.
By this time my speech was slurring, my cognitive was out of wack. My spasms were crazy. I was in serious pain. The new neuro upped my gabapentin, put me on baclofen, and also gave me tramadol. Over the course of the time we had to wait for insurance to finally approve. My symptoms kept getting worse.
Finally I had the new MRI, 10 lesions on my brain. Several lesions on my spinal cord. He then started me on copaxone. He also noticed that I have had a long history of symptoms. One of my eyes looks lazy, small. That started every bit of 20 years ago. I was not born like that. It continues to get worse. He believes that was the start. I also had a small case of "bells palsy" 14 years ago. The new neuro says that was not bells palsy cause I had numbness. Actually the bells started with me thinking I hadn't rinsed out a cup and it still contained soap in it. My tongue started to go numb, and over the course of several days my entire right side of my face went numb. It all makes sense now since my right side is my main side of issue today.
So sorry this is so long. I just know if anyone gets it, and can relate it would be you all.
Anywho the copaxone did not work for me. At first I had some difficulty almost as it knocked me out on the floor and a major zombie like. That went away. The injections got easier. Then after 4 months the site reactions started to really get crazy bad. First night on copaxone I wet the bed. I didn't do that again for awhile. Then I started wetting the bed about the same time the reactions started. Then I started defecating on myself. I called the doc and said I don't care what you do to me I am not taking this mess anymore, haha. They agreed but they thought I needed to come in.
Well in the meantime I had an "accidental" MRI. Oh me my neuro's office scheduled the wrong MRI well and no one realized it till after I had the MRI besides me... anywho long story short on that one. The "accidental" mri showed a new lesion, only 3 months after starting the copaxone. So the doc totally agreed I needed to switch meds.
I go back in August to discuss the new meds. She gave me several options. Believe I have it narrowed down to Avonex. I don't like the idea of shooting it into your muslce, but considering all the others, to me it is the least scary. I am a major anti gmo, anti synthetic, blah blah. I would actually prefer to be on no meds cause I don't believe I am in relapsing remitting. I honestly believe I am already in secondary. My right side is still numb to this day. I have not got back any of the feeling, and I keep slowly getting worse. I sleep so much, and right now I want to go back to sleep and I slept every bit of 12 to 13 hours last night. I am in constant pain. Blah, ya know the scoop no need for me to dwell on it.
Blah I think these kind of places are good. People need people. I read often, sorry i do not comment a lot. Know though I do read the post. I am lurking in the background watching.
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