Hello, I know this will be long. Iwill try to make it as short as possible. I have been having many symptoms for many years. I have never known what they are and sometimes even I believe I am a hypochondriac. The doctors I see treat me as one. Back in August of '10 I had some sort of acute hypertension spell. Went to the ER and spent the night. Did all kinds of tests but they turned out fine. Finally had to go to a Nephrologist and with my test results I found out that I was in some sort of renal stage 2. The doctor acted as if this was no big deal, even though stage 5 is renal stage failure. During this 6 weeks of testing he had me at home doing nothing but laying in bed. I was allowed no activity except to go to the bathroom. During this time my own MOM cried to me on the phone that even she had believed that I was faking everything. That hurt.

But that is really not what this is about. A very good PA discovered through a MonoSpot test that I had a very severe case of Epstein Barr Virus. He told me I must have had it for at least a year or more. I knew this to be correct because I had been doing student teaching and was feverish and out of it everyday, unable to concentrate and very dizzy. It hurt to walk around and I felt like I weighed a ton. Finally I almost fainted and I had to quit student teaching. I took a year break at home to recoup and I was sick during that whole time with a low grade fever every day and spending around 16-18 hours in bed everyday. Lucky I am married because my husband was there to care for our children and me. Only he could see how sick I was and he finally believed me himself.

The PA told me that because the EBV was a 2nd episode, meaning I must have had Mono sometime during my life, I would probably end up with a lot of immune related illnesses. He told me what they were and he mentioned MS. Well since that time I have developed Raynauds Phenomenom, Sjogrens Syndrome, IBS, Chronic Cytomegalovirus, Some sort of different types of Herpes viruses and the EBV, although not chronic is supposedly at a constant level where "it will come out and play" (as the other doctors put it) when the Cyto comes back. I was told to lead a restful life, avoid stress, find a stress free career--IF I even had to consider a career, enjoy a balanced diet-eating every 2 hours-and make sure I avoided any places or people that could have infections since my immune system was now so compromised. Well, guys, as I am sure you have all found out its pretty darned hard to follow all that advise. To me that sounds like what Heaven must be. Real life is stress, McDonalds with the boys, breaking up fights with my boys and yelling at my husband for being to harsh with them, trying my hardest to find SOME sort of career and spending tons of money for the training. I have been officially looking for work for 7 months now. I have a BS in Criminal Justice, An AA in Criminal Justice, 2 minors in literature and psychology, 21 hours post-graduate work, a EC-4th grade teaching certificate, and most recently I procured the dignified title of "Nationally Registered and Certified Medical Assistant"--this put us $16,000 in the big hole.

OK sorry, totally off subject. Heres all my symptoms. This little meanies come and go as they wish and with little or no warning. I have what resembles arthritis, although I have been diagnosed with fibro and CFS. Recently my shoulders have started tightening and that seems to be a symptom of Lymes Disease. When I wake in the AM my left eyelid will sometimes not lift up. This has happened several times but this past week it wouldnt open up a crack for a whole hour. No matter how hard I tried. While this was going on I took a needle and poked all over the left side of my face and felt nothing but pressure. The right side is a different story. That hurt! My left ear is always ringing, always stuffy, sometimes I will wake with blood on my pillow from this ear. ****** I have these horrible headaches that I have never had before. They hurt like a migraine but there not. The whole top of my head, like the scalp and the skull and the sides also around the crown, by my temples and especially in the very back where that little hollow is that connects with your neck---that sucker feels like it is imploding sometimes! I literally spend hours with my massager, massaging my head and behind my ears and my face also-----yeah thats another thing I basically live with chronic sinusitis now. I have taken Ceftin 200mg twice a day for 10 days and it didnt touch it. I was given flonase and a decongestent along with my Neti pot and nothing helped. I just massage now and sometimes there is a little drainage.

I go through periods where I am so fatigued it takes all I can do to get out of bed and get the boys to school. Other times like now, I cant sleep at all even though my doctor has me on Ambien. I have been surviving on about 3-4 hours of sleep a day for over a week now and thats not good since I also have bipolar. I am stable since I have had it for 12 years but not sleeping will bring out the party girl who likes to spend the money. So I really have to watch myself and of course that adds much to the stress level. Oh!! Along with the headache my neck aches all the time. I have a good pillow so I know its not that. But I can gently roll it and it just crackles and pops and will not stop. There is constant crackle and popping in my head as well. I think thats sinus but Im not sure.

Now here is the strange cognitive stuff. Well, some of it might be other stuff but I will lump it all together. My toes will do their own little dance or exercising,depending on how you view it. I like to think of it as dancing so that I dont freak out as much. You see they do it all on their own. My mind is not asking them to do it they just go on and have their own little party. They will bend down and then stretch up as far as they can go, they like to try and climb over each other. All I can do is watch. I command them with my mind to stop and even tell them out loud to stop but just like my kids they refuse to listen to me. Of course this leads to my feet aching which isnt good because I suffered a severe strain on my right foot and 2 rather large fractures on my left foot when I feel and busted my head at my school. My OLD doctor (who will not be seeing me again!) had them x-rayed and said they were just bad strains. I wanted a boot and he said a wrap would be enough. I went to a Podiatrist 6 weeks later because I could still not drive my standard and he x-rayed them and actually showed me the fractures. They were already healing but they were huge! Now I will probably have messed up feet for life.

So on with the cognitive issues (really sorry this is so long) I have had very poor concentration for years now, I go through spells where I am fine and then suddenly I revert back again. I have problems finding the right word(s) to put in a sentence. I will forget the name of everyday items like my purse or the butter. I am serious about that, my family is used to me saying "Has anyone seen my watchamacallit" and if we are all going out they will know I mean my purse. Or I will say "wheres that yellow stuff for Aidan's noodles" and of course they know I mean butter. Its almost like they have learned a sort of sign language with me. Its all very frustrating. I am actually a very intelligent person but if I go to the store to get just 3 things I have to make a mental picture of those 3 things doing something silly together in order to remember what I need to get. I also went through a spell where my speech was slurred. Not too bad but kinda like one sounds when they first wake up in the AM.

I recently had some pretty bad bowel problems. I had diarrhea one AM after eating toast and it was nothing but mucus or fat and very oily. This went on about 6 times that day. A couple of times there was blood wrapped up in the stuff. In one day I lost 7 pounds. That has never happened to me before. I have been steadily losing weight since and I would say I have lost probably about 11 pounds in 3 weeks and I am actually trying to eat better, whereas before I skipped a lot of meals so my boys would have more to eat. Anyway, I had been having pain around my left side where the floating rib is. My doc checked it out and flat out told me there was nothing there but a rib. He ordered x-rays of the left lower side of my ribs. I wanted to laugh in his face. He didnt care one bit. I had told him that I had been to the clinic a week before with the sinus and she said I had a severe left ear infection with blood in my ear. She said I had a severe sinus infection. I asked him if he didnt want to check out my ear since it was still hurting and he said "No, the blood tests will tell the tale." Well, when I had seen the PA at the clinic my WBC was 14,000 and his test came back at 9,500, so they were happy and told me to bring in a stool sample for C-diff, get my x-ray and make an appt. for a colonoscopy. ***************All during this time I was having problems with HUGE lymph nodes, under my jaw near my ear (especially the left side....everything is wrong with my left side). When the PA had seen me she said right away that she could tell my lymph node was extremely swollen. She also felt one under my left arm. Once again these lymph node episodes come and go as they please. Never know if I am going to wake up with one or not.

OK, if you have stayed this long you are probably ready to fall asleep so I will hurry and finish. My left eye is always blurry. I am in danger of glaucoma in that eye and have to be checked every 6 months. The pressure was high one time and was normal the next. I have these swollen and very inflammed looking bumps all along my spine and that was diagnosed as Myalgia and Myositis. Told to see a bone doctor but havent so far. I saw a Neurologist about 4 years ago and he put me through the tests and then he said that he thought I shouldnt do so much research because it was going to my head too much. He was very arrogant and rude. Since then my right fingers will go all the way down and touch my palm, my left fingers go halfway and thats it.There is hardly any pressure in my left hand, right hand a little more. My knee reflex on right side and ankle is ok--not great but ok. My knee on my left side is barely noticeable and the ankle reflex is gone. I trip and fall a whole lot and have to literally look at the ground as I walk. I can not walk up and down stairs normally, I lead with my right foot all the way instead of letting them take turns leading up and down. It looks strange but feels safer to me. I had a strange episode two nites ago where my left side started hurting real bad, it traveled to my back and across to the right side within a matter of about 30 seconds. so severe i bent over and thought I was gonna faint. I was sweating from that so bad it was actually dropping on me. I looked this up and the first thing that came up was "MS Hug" in the "About Guide". I read it and it sounded exactly like what happened to me. This horrible pain subsided but was then a dull pain where I could barely walk and definitely could not turn or twist to the left for 2 days. I woke up after that and I felt perfectly fine.


PLEASE HELP ME SOMEBODY!!! I dont know what to do anymore. Its been so many years of constant symptoms and everyone thinks I am crying wolf. I am so afraid I will just kill over in my kitchen one day because everyone will just assume its no big deal. I dont know who to turn to because when you try to see other doctors they treat you rude either because they think your faking, or because you have too many symptoms and that just wont work with their insurance, or because they think your out "doctor shopping"----(so arrogant....arent we putting food in their mouths and paying for their wife to play tennis in the country club?) Just some one tell me what to do . Thats all just spell out what I need to do. If you think I should travel to some other state where people will actually treat me like a human please please tell me. I cant stand this anymore. It s killing me cuz all I do is lay in bed and I want so bad to have a life. I have spent more time in bed in the last 12 years then I have in my whole lifetime. My boys when they were little used to draw pix of the family and they would draw a pic of mom laying in bed. I feel like a failure. Basically I am a failure. The tests always come out perfect. I had a CAT scan for my busted head and there were no scars apparently. I have not had an MRI, but how do you tell an arrogant dr. that you want an MRI. I am so sorry this is so long but I am at my wits end. This has to be resolved. I just cant go on this way anymore.


Thank you and God bless you. Here is an Irish blessing for you........

May God's glory bless you
As he shields you with his gentle hand
Keeping you cool and refreshed
Guiding you always
Loving you forever
May His face shine upon you
Bringing you strength
Reminding you with a whisper....
You are Perfect...
You are His child....