Aa
Introduce yourself here.
Hi everyone you can introduce yourself on this thread.
What brought you here, how long you have been waiting for a diagnosis and a little bit about yourselves.
You can read about me on the top of this page.
3 years and 1 month I have been waiting. Mariax
What brought you here, how long you have been waiting for a diagnosis and a little bit about yourselves.
You can read about me on the top of this page.
3 years and 1 month I have been waiting. Mariax
Hey yesterdayschild,
Welcome to our friendly and supportive community here.
I would recommend you copy and paste your post,
make part of your question the title of a new post and start fresh,
as this thread is too long and you may find that your post gets
less visibility from being buried at the bottom.
I will respond to your post in a couple days.
Blessings
Niko
Welcome to our friendly and supportive community here.
I would recommend you copy and paste your post,
make part of your question the title of a new post and start fresh,
as this thread is too long and you may find that your post gets
less visibility from being buried at the bottom.
I will respond to your post in a couple days.
Blessings
Niko
Hello all,
I am a newbie and found this group thanks to the suggestion of another person who has a daughter with M.S. I had posted my symptoms in another type of forum (coupons) and a very sweet lady gave me the info on this group. Reading your posts is like deja vous...Lets see I am 51, Live in Oklahoma, I have 7 children all grown except for my 5 year old twins which I adopted after fostering from the age of 4 days...I have 13 grandchildren and up until May of last year I operated a daycare home, I had to give that up because quite frankly I couldn't physically do it any more! I am a very BIG lady to top things off, not 400 lbs but not 300 either, I dieted a week ago and never cheated and gained 2 lbs, what a blow. My journey with pain began years ago, 1991 with horrible migraines, they would last up to 5 days and I would have 2 -3 episodes a month. in 1998 I had an attack in my left leg in which I had horrible pain and numbness, I couldn't walk, just putting my foot on the floor was horrible but to poke the thing I couldn't feel it..after several days of this I went to the ER and was told I had sciatica, I accepted that and contributed the bi-monthly attacks as something to live with....in the last two years I have begun to loose my strength. I am proud of the fact that I am a strong woman and can do anything from putting down carpet to working on my car if necessary, I even plumbed my house!! Now I cannot lift laundry! My son who is mentally handicapped lives on my property and he does all the manual labor for me! If I try to walk or stand for more than 10 minutes the pain in my leg and my joints brings tears, they get hot, hurt horribly and go numb..I have been waking up with my fingers all distorted and they seem locked almost backwards. I slur my speech some and seem to be biting my cheeks and sometimes my tongue in my sleep. I forget everything and sometimes can't remember who is who until I stop and think a minute. I am afraid to go anywhere on my own and now I have these little mini panic attacks where I feel everything almost spin when I have to get out. I have also noticed everything tastes weird. I did have a strain of weird tick fever 2 years ago and I feel that some of this is the fault of that but my doctor is state assigned and he could care less. I had a CAT scan (non dye) of my back and they said nothing was there, now they say I have neuropathy not sciatica....the left side of my face droops some too and they tested for Bells Palsey and said it was not that either. To top it off I was hospitalized in Nov. for 4 days with a blood clot and now I take blood thinners (Warafrin) which kicks my butt as well. I also have high blood pressure. So there is my story, any ideas? What can I do with a doctor that could care less and just breaks out the pad..I was supposed to take Neurontin but I had a psych reaction to Regland once and was afraid I'd want to off myself, I am alone most of the time with the twins who also have disabilities due to their "egg donors" drug usage. I welcome any comments because I am at a loss and I have to survive to raise these two!
I am a newbie and found this group thanks to the suggestion of another person who has a daughter with M.S. I had posted my symptoms in another type of forum (coupons) and a very sweet lady gave me the info on this group. Reading your posts is like deja vous...Lets see I am 51, Live in Oklahoma, I have 7 children all grown except for my 5 year old twins which I adopted after fostering from the age of 4 days...I have 13 grandchildren and up until May of last year I operated a daycare home, I had to give that up because quite frankly I couldn't physically do it any more! I am a very BIG lady to top things off, not 400 lbs but not 300 either, I dieted a week ago and never cheated and gained 2 lbs, what a blow. My journey with pain began years ago, 1991 with horrible migraines, they would last up to 5 days and I would have 2 -3 episodes a month. in 1998 I had an attack in my left leg in which I had horrible pain and numbness, I couldn't walk, just putting my foot on the floor was horrible but to poke the thing I couldn't feel it..after several days of this I went to the ER and was told I had sciatica, I accepted that and contributed the bi-monthly attacks as something to live with....in the last two years I have begun to loose my strength. I am proud of the fact that I am a strong woman and can do anything from putting down carpet to working on my car if necessary, I even plumbed my house!! Now I cannot lift laundry! My son who is mentally handicapped lives on my property and he does all the manual labor for me! If I try to walk or stand for more than 10 minutes the pain in my leg and my joints brings tears, they get hot, hurt horribly and go numb..I have been waking up with my fingers all distorted and they seem locked almost backwards. I slur my speech some and seem to be biting my cheeks and sometimes my tongue in my sleep. I forget everything and sometimes can't remember who is who until I stop and think a minute. I am afraid to go anywhere on my own and now I have these little mini panic attacks where I feel everything almost spin when I have to get out. I have also noticed everything tastes weird. I did have a strain of weird tick fever 2 years ago and I feel that some of this is the fault of that but my doctor is state assigned and he could care less. I had a CAT scan (non dye) of my back and they said nothing was there, now they say I have neuropathy not sciatica....the left side of my face droops some too and they tested for Bells Palsey and said it was not that either. To top it off I was hospitalized in Nov. for 4 days with a blood clot and now I take blood thinners (Warafrin) which kicks my butt as well. I also have high blood pressure. So there is my story, any ideas? What can I do with a doctor that could care less and just breaks out the pad..I was supposed to take Neurontin but I had a psych reaction to Regland once and was afraid I'd want to off myself, I am alone most of the time with the twins who also have disabilities due to their "egg donors" drug usage. I welcome any comments because I am at a loss and I have to survive to raise these two!
It sounds like you and your family have really been through a lot, too. I read your page. It is awful that you are still in limbo after this many years and some very severe issues! Neurology has a long way to go before they can even begin to give anyone definitive answers. I am pessimistic with having a husband with "unexplained seizures" for over 30 years and a dad with "atypical Parkinsons"for 20 years! Your pain issues would make quality of life very difficult to manage. I am having some of that also. I sure hope that doesn't continue to get worse!
Thank you so much for your suggestions. I hadn't found anything as specific as far as other insect bite complications. I called the Dept. of Health this morning and they said that there was one possible case of Tularemia in our area this past summer. They are supposed to call me back with more specific information and testing recommendations later today.
I agree that my job is very close to slavery. I have said many times that I feel like an indentured servant, stuck in this horrible situation for the health insurance! We are the only 1st world country that runs their freight railroads in such a ridiculous fashion. I am very envious of the health care arrangements in the UK (and your wonderfully cool summers!). My husband and daughter don't really have severe medical issues. My daughter had a severe allergic reaction to a dental anesthetic which caused her heart to stop three times, but she does not have a heart problem and thankfully not even any damage resultant from that incident, but American health Insurance companies will use any excuse to refuse to insure people. My husband has had around 10 grand mal seizures over the last 33 years. They are unexplained, but well controlled, but again, the only way for him to have health insurance is under forced coverage, group insurance, not available to self employed people and not even through many company insurance plans. I would definitely move to another country for the health insurance issue alone, but I suspect that isn't an option with preexisting health conditions. When I read about CD and think about my own stress issues, health insurance and my resultant job from hell are at the top of my list! Yeah... I am definitely stressed, but CD doesn't seem to fit.
I have not had a VEP/VER. I'm not sure why, but I think I am somewhat grateful at this point. As of today, it looks like the only way I am going to be able to go back to work is to allow my company full access to my medical records. I don't want to do that on the principal of the thing. I don't really have anything to hide, but that seems like a major invasion of privacy. I think I am going to do it because there is currently a 'reserve board' position I could take for 20% pay, but full benefits. I would only have to take one "training trip" per week (at 2 am though) so I really wouldn't have to do anything but ride the train. Since at this point, I don't feel that I have an alternative but to let them look at my medical records I am at least grateful that there won't be very much information for them to snoop around in. I am just hoping that they won't put me off until my 2nd MRI in Feb. My neuro has testified against my railroad in several lawsuits and may have suspected this and that is why he waited til after the first of the year for more tests. And maybe that explains why they won't accept his letter saying that my symptoms have abated and I am safe to return to work. If I quit on a disability, they have to cover my health insurance for the current calender year +2 more, and my dependents for the current year +1. I suspect that once I get back into the sleep deprivation mode, my symptoms may come back.
X Thanks Again X,
Valerie
Thank you so much for your suggestions. I hadn't found anything as specific as far as other insect bite complications. I called the Dept. of Health this morning and they said that there was one possible case of Tularemia in our area this past summer. They are supposed to call me back with more specific information and testing recommendations later today.
I agree that my job is very close to slavery. I have said many times that I feel like an indentured servant, stuck in this horrible situation for the health insurance! We are the only 1st world country that runs their freight railroads in such a ridiculous fashion. I am very envious of the health care arrangements in the UK (and your wonderfully cool summers!). My husband and daughter don't really have severe medical issues. My daughter had a severe allergic reaction to a dental anesthetic which caused her heart to stop three times, but she does not have a heart problem and thankfully not even any damage resultant from that incident, but American health Insurance companies will use any excuse to refuse to insure people. My husband has had around 10 grand mal seizures over the last 33 years. They are unexplained, but well controlled, but again, the only way for him to have health insurance is under forced coverage, group insurance, not available to self employed people and not even through many company insurance plans. I would definitely move to another country for the health insurance issue alone, but I suspect that isn't an option with preexisting health conditions. When I read about CD and think about my own stress issues, health insurance and my resultant job from hell are at the top of my list! Yeah... I am definitely stressed, but CD doesn't seem to fit.
I have not had a VEP/VER. I'm not sure why, but I think I am somewhat grateful at this point. As of today, it looks like the only way I am going to be able to go back to work is to allow my company full access to my medical records. I don't want to do that on the principal of the thing. I don't really have anything to hide, but that seems like a major invasion of privacy. I think I am going to do it because there is currently a 'reserve board' position I could take for 20% pay, but full benefits. I would only have to take one "training trip" per week (at 2 am though) so I really wouldn't have to do anything but ride the train. Since at this point, I don't feel that I have an alternative but to let them look at my medical records I am at least grateful that there won't be very much information for them to snoop around in. I am just hoping that they won't put me off until my 2nd MRI in Feb. My neuro has testified against my railroad in several lawsuits and may have suspected this and that is why he waited til after the first of the year for more tests. And maybe that explains why they won't accept his letter saying that my symptoms have abated and I am safe to return to work. If I quit on a disability, they have to cover my health insurance for the current calender year +2 more, and my dependents for the current year +1. I suspect that once I get back into the sleep deprivation mode, my symptoms may come back.
X Thanks Again X,
Valerie
Welcome Valkyrie568 to our little community here.
Could you copy and paste your post with a title
(part of your question could be the title) as a regular new post.
It will be much easier for members to access and read,
as this is a very long thread and your post, easy to miss!
I will post my reply later.
Blessings.
Niko
Could you copy and paste your post with a title
(part of your question could be the title) as a regular new post.
It will be much easier for members to access and read,
as this is a very long thread and your post, easy to miss!
I will post my reply later.
Blessings.
Niko
Welcome to the board.
Wow you have been through the mill havent you. I take it you also have health problems with your husband and daughter?
Just looking quickly at your post did you ever have a VER/VEP test done for Optical Neuritis? I had this shutter going down on the vision when i was on holiday in Brazil. It happened again when i got home. eventually i did have a VEP test and it was found i did have optical neuritis at the time, which can be onset of MS or even other auto immune diseases. Your eye symptoms sound classic for ON even way back in 2004.
As to insect bites in Wyoming I found this straight away lol:
http://jama.ama-assn.org/content/293/14/1721.full
I noticed that Tularemia can affect the eyes.
Hives is an allergic reaction to the bite so if you have already an auto immune problem going on being bitten by something could have been one of the straws that broke the camels back if you get my drift. Just one more thing for your system to fight and if you have compromised immune system already it could have resulted in the hives reaction.
My goodness your job. I thought they got rid of slavery years ago. Your hours of work are intolerable for anyone to cope with. Its ridiculous. Especially when working in such a dangerous job. It would never be allowed in the UK...there would be an uprising lol.
Epstein Barr (mono) has been linked with MS, and many other auto immune diseases. So the chances are your vist by this virus could have easily woken up something that was just laying there waiting......
I would certainly persue Lymes and any other zoonotic disease that could be triggered by an insect bite.
Also i would have thought a VEP/VER would have been essential to see if you did have optical neuritis......
I will look around and do some more research.
I cant get over your job lol......its no wonder you have something going on.
Big hugs. Maria
Wow you have been through the mill havent you. I take it you also have health problems with your husband and daughter?
Just looking quickly at your post did you ever have a VER/VEP test done for Optical Neuritis? I had this shutter going down on the vision when i was on holiday in Brazil. It happened again when i got home. eventually i did have a VEP test and it was found i did have optical neuritis at the time, which can be onset of MS or even other auto immune diseases. Your eye symptoms sound classic for ON even way back in 2004.
As to insect bites in Wyoming I found this straight away lol:
http://jama.ama-assn.org/content/293/14/1721.full
I noticed that Tularemia can affect the eyes.
Hives is an allergic reaction to the bite so if you have already an auto immune problem going on being bitten by something could have been one of the straws that broke the camels back if you get my drift. Just one more thing for your system to fight and if you have compromised immune system already it could have resulted in the hives reaction.
My goodness your job. I thought they got rid of slavery years ago. Your hours of work are intolerable for anyone to cope with. Its ridiculous. Especially when working in such a dangerous job. It would never be allowed in the UK...there would be an uprising lol.
Epstein Barr (mono) has been linked with MS, and many other auto immune diseases. So the chances are your vist by this virus could have easily woken up something that was just laying there waiting......
I would certainly persue Lymes and any other zoonotic disease that could be triggered by an insect bite.
Also i would have thought a VEP/VER would have been essential to see if you did have optical neuritis......
I will look around and do some more research.
I cant get over your job lol......its no wonder you have something going on.
Big hugs. Maria
I am so glad to have found this group. Limbo-land is a tough place to be!
I have had some odd things going on for awhile now, but I have a horrible job where I am on call 24/7 literally, so I have been attributing most of the strange symptoms to sleep deprivation. I have worked as a railroad freight conductor for the last 7 years and the hours are insane! I get a call telling me that I have 2 hours to report to work, and I have no way of knowing if I will be there for 6 hours or 15 hours. Fortunately, the FRA has started fining the railroads if they keep you for more than 12 hours so that doesn't happen often anymore. My waking hours can flip flop from day to night every other day so I pretty much live in a constant state of jet lag.
Starting in August, shortly after I got some sort of insect bite which caused me to have huge hives over most of my body, things got decidedly worse. At first my main issues were extreme fatigue, concentration issues and coordination issues. The hives were long lasting and I took two 10 day courses of Prednisone for the hives followed by 2 months of Allegra allergy medication, which is also a steroid. By October, the hives had finally gone away so I quit the steroid use.
One night while being stuck in a train traffic jam for a few hours,and more tired than usual, I took a cat nap and when I woke up, I could only see out of one eye; it was like the other one had a patch over it or something! It only lasted a few minutes, thankfully, but it was very scary and I reacted strongly enough that the two guys I was working with noticed something was wrong. Later that shift, I had to walk about 500 ft. on the loose rock along the track, I honestly looked like I was drunk or something! I kept turning my ankles when a rock would shift unexpectedly and could not walk in a straight line. On my walk back, I was able to concentrate, look carefully at the terrain, and use a tool used to set brakes on the cars like a walking stick, and I thought I walked like a sober person. However, I made enough of a spectacle of myself that I had to take a random drug test and am still off work until I can prove "fitness for duty". I have a hard time trying to assert that I am fit for duty, when I am well aware of how dangerous my job is. A loss of balance, or even slow reactions could easily get me killed. However, if I don't return to work, my whole family will be without health insurance. My husband is self employed and both he and my youngest daughter are 'un-insurable'. Even though I don't yet have a diagnoses, I probably am now, too.
I have had a couple of appointments with a neurologist who has done a great job getting my husband's seizure disorder well controlled. In talking with him about my medical history I discovered that I have had some suspicious symptoms that go back all the way to '04 including the complete loss of sight in my right eye after first waking up. I have also had slurred speech and periodic clumsiness that are greatly affected by my level of fatigue and a complete intolerance to heat. I had visible swelling and inflammation of my right eye during the exam and after doing the eye movement tests, etc, it was very painful for a couple of weeks. Turning my eye to the side felt like I was being stabbed in the eye. I have also had a very hard time dealing with chaotic noise for the last few years. Modern movies with their imposing sound tracks drive me out of the living room. My family chose a sports bar for lunch last year and the multiple TV's going at once was too much for me. I had to leave before our food came. It is truly irritating, but it also actually makes my ears hurt. Strange.
The loss of vision thing happened two more times between my initial appt. and my MRI. The last time I was able to turn a light off and on repeatedly and confirm my suspicions that it is basically caused by my pupil being 'stuck' in a pinpoint position and unable to dilate for night vision. I could see okay with the light on, but when I shut it off I couldn't see a thing. I am a semi-professional photographer and it reminds me of a defective camera lens. It doesn't last more than a few minutes which apparently is not MS like, but my vision during this worst bout was blurry for over a month and I normally have 20/15 vision and I had a lot of trouble with suddenly forgetting words that I normally use. Another new issue during this time was being easily upset. I don't know how to describe it really but for example while driving to work, I was passing a semi-truck on a bridge on the interstate when he blew a tire. The tread came flying out from under his trailer right at me. I couldn't swerve as I was on a bridge, but as it is rural Wyoming, there was no traffic behind me so I was able to slam on the brakes and slow down enough that it hit my bumper and undercarriage as opposed to my windshield. I pulled over to see what damage was done and called my husband shaking and almost crying and he had to walk me through inspecting my car and calm me down enough to drive. Thanks to great skid plates there was no damage, but freaking out like that IS NOT ME! I have raced cars and boats and had plenty of near misses, but I have never gotten that upset! Even in the midst of it, I knew I was overreacting for ME.
I have also been to see my PA two times in the last few years thinking I was just starting to get a bladder infection, but no sign of infection was found either time. I have noticed this more than once but felt foolish enough that I elected to wait and see and it would eventually go away on it's own.
The neuro ordered an MRI w/ contrast of my brain and that came back normal. I am supposed to go back in Feb. for another MRI but he never said anything about an MRI of my spine. He decided not to do a lumbar puncture until after seeing what my next MRI looks like.
After doing some research into what else this could be, I am concerned that no one tested me for Lyme's disease or something similar. There are no known cases in Wyoming but there are over 100 other tick borne pathogens and I have seen 3 different doctors since my unknown insect bite and subsequent hives and no one thought that was worth checking out. Also, I had Mono in '02 at 34 years old and have been prone to frequent unexplained low grade fevers ever since.
If anyone has any suggestions I would be most appreciative of your input! It sounds like a lot of you have been stuck in limbo-land for a very long time and done a lot of research.
I apologize for such a long post!
I have had some odd things going on for awhile now, but I have a horrible job where I am on call 24/7 literally, so I have been attributing most of the strange symptoms to sleep deprivation. I have worked as a railroad freight conductor for the last 7 years and the hours are insane! I get a call telling me that I have 2 hours to report to work, and I have no way of knowing if I will be there for 6 hours or 15 hours. Fortunately, the FRA has started fining the railroads if they keep you for more than 12 hours so that doesn't happen often anymore. My waking hours can flip flop from day to night every other day so I pretty much live in a constant state of jet lag.
Starting in August, shortly after I got some sort of insect bite which caused me to have huge hives over most of my body, things got decidedly worse. At first my main issues were extreme fatigue, concentration issues and coordination issues. The hives were long lasting and I took two 10 day courses of Prednisone for the hives followed by 2 months of Allegra allergy medication, which is also a steroid. By October, the hives had finally gone away so I quit the steroid use.
One night while being stuck in a train traffic jam for a few hours,and more tired than usual, I took a cat nap and when I woke up, I could only see out of one eye; it was like the other one had a patch over it or something! It only lasted a few minutes, thankfully, but it was very scary and I reacted strongly enough that the two guys I was working with noticed something was wrong. Later that shift, I had to walk about 500 ft. on the loose rock along the track, I honestly looked like I was drunk or something! I kept turning my ankles when a rock would shift unexpectedly and could not walk in a straight line. On my walk back, I was able to concentrate, look carefully at the terrain, and use a tool used to set brakes on the cars like a walking stick, and I thought I walked like a sober person. However, I made enough of a spectacle of myself that I had to take a random drug test and am still off work until I can prove "fitness for duty". I have a hard time trying to assert that I am fit for duty, when I am well aware of how dangerous my job is. A loss of balance, or even slow reactions could easily get me killed. However, if I don't return to work, my whole family will be without health insurance. My husband is self employed and both he and my youngest daughter are 'un-insurable'. Even though I don't yet have a diagnoses, I probably am now, too.
I have had a couple of appointments with a neurologist who has done a great job getting my husband's seizure disorder well controlled. In talking with him about my medical history I discovered that I have had some suspicious symptoms that go back all the way to '04 including the complete loss of sight in my right eye after first waking up. I have also had slurred speech and periodic clumsiness that are greatly affected by my level of fatigue and a complete intolerance to heat. I had visible swelling and inflammation of my right eye during the exam and after doing the eye movement tests, etc, it was very painful for a couple of weeks. Turning my eye to the side felt like I was being stabbed in the eye. I have also had a very hard time dealing with chaotic noise for the last few years. Modern movies with their imposing sound tracks drive me out of the living room. My family chose a sports bar for lunch last year and the multiple TV's going at once was too much for me. I had to leave before our food came. It is truly irritating, but it also actually makes my ears hurt. Strange.
The loss of vision thing happened two more times between my initial appt. and my MRI. The last time I was able to turn a light off and on repeatedly and confirm my suspicions that it is basically caused by my pupil being 'stuck' in a pinpoint position and unable to dilate for night vision. I could see okay with the light on, but when I shut it off I couldn't see a thing. I am a semi-professional photographer and it reminds me of a defective camera lens. It doesn't last more than a few minutes which apparently is not MS like, but my vision during this worst bout was blurry for over a month and I normally have 20/15 vision and I had a lot of trouble with suddenly forgetting words that I normally use. Another new issue during this time was being easily upset. I don't know how to describe it really but for example while driving to work, I was passing a semi-truck on a bridge on the interstate when he blew a tire. The tread came flying out from under his trailer right at me. I couldn't swerve as I was on a bridge, but as it is rural Wyoming, there was no traffic behind me so I was able to slam on the brakes and slow down enough that it hit my bumper and undercarriage as opposed to my windshield. I pulled over to see what damage was done and called my husband shaking and almost crying and he had to walk me through inspecting my car and calm me down enough to drive. Thanks to great skid plates there was no damage, but freaking out like that IS NOT ME! I have raced cars and boats and had plenty of near misses, but I have never gotten that upset! Even in the midst of it, I knew I was overreacting for ME.
I have also been to see my PA two times in the last few years thinking I was just starting to get a bladder infection, but no sign of infection was found either time. I have noticed this more than once but felt foolish enough that I elected to wait and see and it would eventually go away on it's own.
The neuro ordered an MRI w/ contrast of my brain and that came back normal. I am supposed to go back in Feb. for another MRI but he never said anything about an MRI of my spine. He decided not to do a lumbar puncture until after seeing what my next MRI looks like.
After doing some research into what else this could be, I am concerned that no one tested me for Lyme's disease or something similar. There are no known cases in Wyoming but there are over 100 other tick borne pathogens and I have seen 3 different doctors since my unknown insect bite and subsequent hives and no one thought that was worth checking out. Also, I had Mono in '02 at 34 years old and have been prone to frequent unexplained low grade fevers ever since.
If anyone has any suggestions I would be most appreciative of your input! It sounds like a lot of you have been stuck in limbo-land for a very long time and done a lot of research.
I apologize for such a long post!
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Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
