REALLY SCARED!!!!
Hi,
This is not an upbeat journal entry. I am sure no one ever reads these things so I do not even know why I put "call for help" on here. But that is what I am doing. I am getting scared now. It was easier to deal with when my symptoms were sporadic and not so debilitating. Now it seems as if things are rapidly changing for me. I have to wonder why that is. I do have bipolar disorder. Sometimes people with this mental disorder become hypochondriacs. I admit that at times in the past I have fit the bill of one. I have taken ordinary illnesses such as colds and turned them into pneumonia or when my doc told me I should have a CT scan years ago when I had fallen on my face on cement so that he could rule out a brain tumor or other brain issue I immediately started calling family members and telling them that I had a brain tumor and that the doc just did not want to scare me right off. I actually believed these things.
Then because when I was freaking out about small illnesses and making them huge in my own mind people started saying I was the girl who cried wolf. They started to call me a hypochondriac. Even my own mom. My sister quit talking to me because of it and my friends were irritated with me. So I kinda went inside myself. Then what happened is I just quit going to the doctor about weird symptoms. It didnt help that I had a neuro visit 4 years ago and he basically told me it was all in my head and there was not a single thing wrong with me. (I was having many of the same symptoms I am having now but only lighter). So I just suppressed everything. I tried to go on my merry way for years even though the symptoms were becoming more frequent and lasting longer.
My PA back in 2006 discovered that I had a severe case of Epstein Barr Virus. Apparently I had it before but had not known about it. This was the EBV coming back so it was not Mono but the more dangerous form of the virus. Kinda like getting shingles after you have had chickenpox. Shingles being more dangerous. It had taken me a year to work up the courage to see someone about the horrible problems I had been having, like sleeping for 18 hours, no strength, swollen lymph nodes, fatigue, etc... Luckily my PA was really good. He seemed to know what to look for after his first initial battery of tests eleminated a lot of other stuff. At the time he told me that I could "expect" to acquire many more immune related illnesses because the EBV had been so severe and overlooked for so long. He told me a list of things I could possibly expect and I remember the first one he said was MS. He also said RA, Lupus, Reynauds, Sjogrens, Fibro, IBs, and tons of other stuff. Well I now have been actually diagnosed with Reynauds, Sjogrens, Fibro, and IBS. Courts still out on the RA although my numbers have been increasing on that test and my doc has told me that I will end up with it, just a matter of getting the numbers high enough to medically diagnose it. I also have Cytomegaloviris now and that is chronic. That baby causes me bad headaches, neck pain and fatigue. Supposedly according to one doc when the Cyto hits the EBV likes to "come out and play". I was worried about a coupla months ago because the Cyto hit but it was not the usual symptoms. I started to feel really bad and more tired than usual. I went to my doc and told him Iwould like him to do an EBV panel to see if it had come back. He basically said that I already knew I had it and that I knew it could come back so why bother with a test? My thinking was that if I knew I had EBV again I could tell my family and try to get more rest to take better care of myself and therefore nip the EBV in the bud faster. Well, now my thinking is that it WAS the EBV and shortly after that was when these MS symptoms started getting worse. It really makes perfect sense. My immune system had to be completely worn out trying to fight now only the Cyto but also the EBV. Then I got a bladder infection, a UTI, and a stomach and then respiratory virus. My WBC probably were going crazy! They were constantly high. Then they dipped from 14,800 down to 9,200 in a matter of 2 weeks. I have no idea what that means. Its just strange for my body because I never have sharp dips in my blood cell counts in that short of time.
So then the blepharospasms that had started well over a year ago with a simple eyelid shutting in the AM when I first awoke for about 15 minutes to going over an hour, to now shooting up to 2 hours and doing it not only when I first awake but also during the day if the sun is too bright and I am not wearing shades. Also at night when I am tired (like right now the left one is completely shut and the right one is partially shut). The other night when I was answering a post to me I had a sudden case of double vision. That FREAKED me out! I did everything I could to make it go away and nothing worked. Only helped a little when I opened my eyes real wide....things would look normal for about 30 seconds and then go straight back to double vision. Also it felt like I was cross eyed. I had read that someone else had the same feeling. Vertigo has also been coming and going and that always makes my stomach feel quesy.
Tonight when I went grocery shopping, about halfway through (1 1/2 hours into the experience) I felt like my lower back and my left leg were suddenly giving out on me. I would have fallen to the ground if I did not have both hands on the cart handle. Then on 2 different times I put my left leg behind my right to kinda "twirl around" to get something and this is something I always have done, a very routine movement for me. Well when I did it tonight I also tripped forward and would have fallen if it were not for the trusty handle of the cart. I felt the left side of my inner thigh next to my groin as a very painful feeling. I found that I was beginning to limp in a peculiar way. I was literally stepping forward with my right leg and kinda "pulling" my left leg up with me. Not a regular limp at all. People were staring at me. I could feel them. When I would catch someone staring they would turn away quickly. All I wanted to do was get out of there. So what is going on with me? Does it all sound like MS? Oh yeah, I did have that "MS hug" about a week ago and that is one horrifying experience!!!! I had been having left side pain right where my floating rib is at the bottom of my ribcage for about 3 or 4 days and at times I felt it on the other side as well. I went to my doc about it and he kinda blew it off saying that he would order an x-ray of my left ribs. He didnt think there was anything wrong. I could sense that he was humoring me. He did tell me to give a fecal specimen for a C-Diff test and to plan for a colonoscopy. Well I have not done either one. That night after I saw him I was in my kitchen looking for teaspoon when suddenly just out of the blue the pain on my left side just reached out and met halfway the pain on my right side creating this very strong binding around my waist and almost simultaneously the whole thing reached around my back and so there was this "circle thing" like some kinda boa constrictor was wrapped completely around my waist. I just remember grabbing my stomach and holding it tight like I was a wounded soldier trying to keep my innards in. It actually seemed to help the pain some. Then I basically just bent over in half and then let myself collapse to the floor. Idid not cry out as I am not that kind of person. I usually suffer intense pain in silence. It was so bad it made me sweat and feel like I needed to throw up. Then it lasted like 5 minutes and then just went away.
So, after writing this very lengthy journal article all I have to say is I am also scared that they will not find a diagnosis of MS. If it is not MS (which is not curable but at least is treatable) then what else could it be? I dont even want to think of that. They will probably tell me it is all in my head again. That is my biggest truest fear. My silient fear. It consumes me at times. Huh!!!! All the time.
Well time to vamanos. Going to go with my mom to visit my aunt on Friday morning and have to have everything packed up tomorrow. Have to wake up extra early tomorrow so that my eyes can open (at least an hour) and then get my son up extra early so he can use the computer for school and then I have to have him at school by 7:30 for band sectionals. Then I have to turn right around to take my other son to school by 8:15. Busy, Busy. Need to learn to sleep better. Hard, Hard.
This is not an upbeat journal entry. I am sure no one ever reads these things so I do not even know why I put "call for help" on here. But that is what I am doing. I am getting scared now. It was easier to deal with when my symptoms were sporadic and not so debilitating. Now it seems as if things are rapidly changing for me. I have to wonder why that is. I do have bipolar disorder. Sometimes people with this mental disorder become hypochondriacs. I admit that at times in the past I have fit the bill of one. I have taken ordinary illnesses such as colds and turned them into pneumonia or when my doc told me I should have a CT scan years ago when I had fallen on my face on cement so that he could rule out a brain tumor or other brain issue I immediately started calling family members and telling them that I had a brain tumor and that the doc just did not want to scare me right off. I actually believed these things.
Then because when I was freaking out about small illnesses and making them huge in my own mind people started saying I was the girl who cried wolf. They started to call me a hypochondriac. Even my own mom. My sister quit talking to me because of it and my friends were irritated with me. So I kinda went inside myself. Then what happened is I just quit going to the doctor about weird symptoms. It didnt help that I had a neuro visit 4 years ago and he basically told me it was all in my head and there was not a single thing wrong with me. (I was having many of the same symptoms I am having now but only lighter). So I just suppressed everything. I tried to go on my merry way for years even though the symptoms were becoming more frequent and lasting longer.
My PA back in 2006 discovered that I had a severe case of Epstein Barr Virus. Apparently I had it before but had not known about it. This was the EBV coming back so it was not Mono but the more dangerous form of the virus. Kinda like getting shingles after you have had chickenpox. Shingles being more dangerous. It had taken me a year to work up the courage to see someone about the horrible problems I had been having, like sleeping for 18 hours, no strength, swollen lymph nodes, fatigue, etc... Luckily my PA was really good. He seemed to know what to look for after his first initial battery of tests eleminated a lot of other stuff. At the time he told me that I could "expect" to acquire many more immune related illnesses because the EBV had been so severe and overlooked for so long. He told me a list of things I could possibly expect and I remember the first one he said was MS. He also said RA, Lupus, Reynauds, Sjogrens, Fibro, IBs, and tons of other stuff. Well I now have been actually diagnosed with Reynauds, Sjogrens, Fibro, and IBS. Courts still out on the RA although my numbers have been increasing on that test and my doc has told me that I will end up with it, just a matter of getting the numbers high enough to medically diagnose it. I also have Cytomegaloviris now and that is chronic. That baby causes me bad headaches, neck pain and fatigue. Supposedly according to one doc when the Cyto hits the EBV likes to "come out and play". I was worried about a coupla months ago because the Cyto hit but it was not the usual symptoms. I started to feel really bad and more tired than usual. I went to my doc and told him Iwould like him to do an EBV panel to see if it had come back. He basically said that I already knew I had it and that I knew it could come back so why bother with a test? My thinking was that if I knew I had EBV again I could tell my family and try to get more rest to take better care of myself and therefore nip the EBV in the bud faster. Well, now my thinking is that it WAS the EBV and shortly after that was when these MS symptoms started getting worse. It really makes perfect sense. My immune system had to be completely worn out trying to fight now only the Cyto but also the EBV. Then I got a bladder infection, a UTI, and a stomach and then respiratory virus. My WBC probably were going crazy! They were constantly high. Then they dipped from 14,800 down to 9,200 in a matter of 2 weeks. I have no idea what that means. Its just strange for my body because I never have sharp dips in my blood cell counts in that short of time.
So then the blepharospasms that had started well over a year ago with a simple eyelid shutting in the AM when I first awoke for about 15 minutes to going over an hour, to now shooting up to 2 hours and doing it not only when I first awake but also during the day if the sun is too bright and I am not wearing shades. Also at night when I am tired (like right now the left one is completely shut and the right one is partially shut). The other night when I was answering a post to me I had a sudden case of double vision. That FREAKED me out! I did everything I could to make it go away and nothing worked. Only helped a little when I opened my eyes real wide....things would look normal for about 30 seconds and then go straight back to double vision. Also it felt like I was cross eyed. I had read that someone else had the same feeling. Vertigo has also been coming and going and that always makes my stomach feel quesy.
Tonight when I went grocery shopping, about halfway through (1 1/2 hours into the experience) I felt like my lower back and my left leg were suddenly giving out on me. I would have fallen to the ground if I did not have both hands on the cart handle. Then on 2 different times I put my left leg behind my right to kinda "twirl around" to get something and this is something I always have done, a very routine movement for me. Well when I did it tonight I also tripped forward and would have fallen if it were not for the trusty handle of the cart. I felt the left side of my inner thigh next to my groin as a very painful feeling. I found that I was beginning to limp in a peculiar way. I was literally stepping forward with my right leg and kinda "pulling" my left leg up with me. Not a regular limp at all. People were staring at me. I could feel them. When I would catch someone staring they would turn away quickly. All I wanted to do was get out of there. So what is going on with me? Does it all sound like MS? Oh yeah, I did have that "MS hug" about a week ago and that is one horrifying experience!!!! I had been having left side pain right where my floating rib is at the bottom of my ribcage for about 3 or 4 days and at times I felt it on the other side as well. I went to my doc about it and he kinda blew it off saying that he would order an x-ray of my left ribs. He didnt think there was anything wrong. I could sense that he was humoring me. He did tell me to give a fecal specimen for a C-Diff test and to plan for a colonoscopy. Well I have not done either one. That night after I saw him I was in my kitchen looking for teaspoon when suddenly just out of the blue the pain on my left side just reached out and met halfway the pain on my right side creating this very strong binding around my waist and almost simultaneously the whole thing reached around my back and so there was this "circle thing" like some kinda boa constrictor was wrapped completely around my waist. I just remember grabbing my stomach and holding it tight like I was a wounded soldier trying to keep my innards in. It actually seemed to help the pain some. Then I basically just bent over in half and then let myself collapse to the floor. Idid not cry out as I am not that kind of person. I usually suffer intense pain in silence. It was so bad it made me sweat and feel like I needed to throw up. Then it lasted like 5 minutes and then just went away.
So, after writing this very lengthy journal article all I have to say is I am also scared that they will not find a diagnosis of MS. If it is not MS (which is not curable but at least is treatable) then what else could it be? I dont even want to think of that. They will probably tell me it is all in my head again. That is my biggest truest fear. My silient fear. It consumes me at times. Huh!!!! All the time.
Well time to vamanos. Going to go with my mom to visit my aunt on Friday morning and have to have everything packed up tomorrow. Have to wake up extra early tomorrow so that my eyes can open (at least an hour) and then get my son up extra early so he can use the computer for school and then I have to have him at school by 7:30 for band sectionals. Then I have to turn right around to take my other son to school by 8:15. Busy, Busy. Need to learn to sleep better. Hard, Hard.
Replies
Hope you get this figured out soon. It sounds like MS to me. The sooner you start treatment, the sooner you can slow progression.
Gentle hugs, Linda
Wow, I \'get it\' and hope we all are doing better soon.
((hugs))
:-) Patricia