41 yr. old female w/paresthesias, pain and muscle twitches

[Haileys Mom]

Hi,all. I'm a busy Mom of two little ones, as I work full time. My symptoms began on New Year's Eve day, to be exact!  But, to bring in the full picture, I must begin by saying that I had a bad sinus infection during the week of Thanksgiving. It hit me hard and I said it was almost as bad as the flu but without muscle aches or chills, fever, etc. I was treated with a Zpack (Zithromax) and felt better fairly quickly.  Then, I had a lingering cough, which my hubby said was probably post-nasal drip that was aggravating my throat. The cough had me worried, as I'm a chronic worrier since having kids. The thought of "lung cancer" was prevalent because of hearing about Dana Reeves' first symptom of lung cancer being a cough that wouldn't go away. So fast forward to being stressed out about Christmas shopping, money, marital bickering, work, and two little ones, and the fact that I got another cold and/or sinus infection on Dec. 28th. I can recall thinking that I don't get sick much but now I have just gotten a second cold. BUT, at least the start of that virus actually got rid of that annoying cough! Weird, but I haven't had it since. However, I was completely stressed out about WHY I'd gotten a second virus/infection and then two days later, I woke up feeling lousy. I knew I wasn't going in to work and called my Mom to tell her, " I can't believe how SORE and tired my arms are!"  She even seemed surprised at that. So, then my mind started racing and I thought something must be up with my immune system with getting 2 bugs so close together. I immediately felt scared about how tired, weak and sore my arms were. I felt as if my muscles were fatigued from heavy lifting. They felt sore. Then, I went back to work on New Year's Eve. I do repetitive assembly work sitting at a microscope all day in a fixed position and arms about level with my heart and my arms rest on a table while I work under the scope. Having worked there for 12 years, I am used to it. Anyway, after lunch while resuming my work, I suddenly felt my hands go tingly and numb. My arms felt like rubberbands and I went into my superviser's office and told him. He knew I had a history of anxiety and panic so he talked me down and said maybe it was the abx. I called Dr. but he said no to abx because of no rash and I'd taken it before. He said most likely the cause was underlying condition... virus/infection... and that it might be hyperventilating.
Needless to say, I was panicked the whole rest of the day and came home and hubby knew our night was shot. I spent the night in bed trembling in fear that I had some horrid disease such as ALS or MS or bad circulation, etc. Then, the next day I experienced some minor numbness in hands again but then it went away. Then, the twitching came. First it was thumb and pointer finger, then it seemed to go to my calves and thighs once in a while. Then, my arches of my right foot twitched occasionally as well as area around my right knee. Googling my symptoms made things even more scary for me and I became convinced it could be ALS. Then my right calf felt "odd" like vibrating slightly and then sometimes it felt like a band around my knee. The twitching would come and go, but I felt so scared every night when i went to bed. Actually, sleeping was good for me, as it was my only relief from worry. THe mornings became a doom and gloom type feeling because the day light and reminder of having to get up and get myself and kids ready for work in light of what I COULD have was a horrible feeling. I then asked my Dr. for Xanax and started on small dose once in a while to help me thru this. Tried taking Paxil but couldn't get past the first day on it for the nausea was so bad. I then asked for amitripilene and have been on a low dose for anxiety. I have had to wake up a half hour before I rise for the day, to swallow half a xanax so I don't have the feeling of doom in the morning and so I can functionn without worry. Long story short... I had an EMG/NCT done and it was negative (normal). The Dr. that performed it said that I did not have ALS and not to worry. Also mentioned that he has had patients with BFS and I *could* have that. No explanation for buzzing/vibrating soles of feet and/or calf.

I have been waiting to go to the neurologist for a while. My appt. isn't until end of March. So, I am praying everyday that the symptoms are not MS and that it could be some weird thing brought on by the viruses, like post-viral syndrome or benign fasciculation syndrome.

My most recent symptoms are the vibrating/buzzing feeling in feet and sometimes right calf/leg area when sitting at my desk/microscope with feet flat on ground. Sometimes a twitch here and there but not like before. They have lessened considerably to where they aren't too worrisome. But yesterday I had an odd sensation up my thigh that felt like a prolonged twitch... very odd. And, before I started taking the xanax before getting out of bed, I would notice some days I would get bad arm pains in both arms. On a weekend... Saturday... hubby and kids and I went to a steakhouse to eat and the pains got so bad that I couldn't even wait for my meal to arrive and I called my Mom to pick me up and take me to the ER. On the way over, I took a xanax and then the pain was gone by the time I got there. The ER doc said not to worry about ALS and that EMG ruled it out. THe nurse suggested anxiety because the xanax is not a pain reliever. Dr. said anxiety can cause pain. (???) All these symptoms are driving me crazy at times. Some days I feel really good and then other days the symptoms are back. Now, the symptoms I experience most are the vibrating/buzzing soles of feet and calf. And, I get pains in fingers, shins and above knee at times. Sometimes it feels like arthritic pain but I can't be sure.

My CBC came out all normal except Sed rate is high at 51. Tests for ANA , lupus, RA all negative.

I hope someone can help me or give me some hope that I'm ok!! Thank you. I want to stay positive for my kids and family. I have to be healthy and strong for them and for me too.

[Haileys Mom]

I forgot to add that on some days the muscles were sore to the touch (localized pain)

[Stef1971]

I was diagnosed with post viral syndrome a couple of weeks ago.  It sounds so similar to what you are experiencing and it is very scary to have so many neurological symptoms.  I too was worried that I had some horrible disease.  Mine started with pneumonia in November followed by asthmatic bronchitis.  While I was still sick with the bronchitis I started experiencing all kinds of odd symptoms that were hard to explain since they seemed to vary day by day and even hour by hour.  I started with feeling like something was crawling in my back (I assume muscle spasms) and then my muscles would twitch.  Sometimes my arms, legs even my back and stomach.  Then I felt extreme weakness in both my arms and sometimes in my legs.  Sometimes it felt like my arms were glued to the bed.  I was so tired too.  The symptoms would travel.  Sometimes they were in my arms, sometimes my legs, sometimes just one arm or leg.  I would feel a burning or almost a cold sensation go through my muscles too.  At times I completely lost my appetite.  My fingers would go numb and my hands and feet tingle.  Sometimes my fingers were so stiff it felt like they didn't work right and they would get tired just holding a pen.  My vision felt off for awhile (although I went to an eye doctor and they said my eyes were great and they do feel better now).  It was actually the eye doctor that first mentioned post viral.  I saw a rheumatologist and they said I had fribromyalgia (which was something I already thought I had before I have even gotten sick because I have experienced years of achiness).  They ordered aquatic physical therapy for me.  I then saw a neurologist who said that she could find nothing neurologically wrong with me.  She assessed me in her office and said that she did not even need to order further testing.  She said that the post viral can take awhile to go away, there is no time line on how long it will last.  She told me to try to relieve any stress that I may have and she even recommened bath salts that help relieve muscle pain and stress.  She asked me if I had ever had mono (I did) because she said that post viral is more commom in people who have had mono or Epstein Barr.  She said that the post viral is your body reacting.  I didn't really fully understand, reacting to what.  I have 3 young children at home and it's really hard to be a mom when you feel so bad.  Some days are bad and some are good.  I wish that there was more information out there for us.  It is really scary.  I hope that your neuro appt goes well.

[Haileys Mom]

Thanks for your reply! I'm so sorry you had to go thru pneumonia and the bronchitis. What a rough time you were through. It really helps to know there are things that can explain odd symptoms. That was interesting how your eye doctor was the one who mentioned PVS first. And, it's a good thing your eyes are in such great shape! I wish I didn't have to wear contacts but I am nearsighted so they are a must ;)  You are a real trooper with all you went through and then with some neurological things... wow! I agree that it's so hard when you have children. You try to keep your "game face" on but inside you are so frustrated and worried, as well as tired.

I'm grateful for people like you who respond. It helps me in ways I can't really explain. Just reaching out to people in times of need takes the edge off a bit and I thank you again.

I hope you continue to feel much better!! Take care.

[Stef1971]

I am sorry for everything that you are going through too.  It is really scary and so easy to worry when you know that you are not yourself.  It is so hard waiting for that neuro appt. too.  My doctor cancelled mine on the day I was scheduled (family emergency) and even though I then only had to wait 2 more days to be rescheduled, it is so hard waiting.  Even now, that the doctor told me not to worry and that it was post viral, sometimes without having had an MRI I still find myself worrying.  I have to keep reminding myself that I have been to a few different specialists and my primary care doctor many times, and everyone keeps saying that this will go away, they just don't know exactly when.  I have to keep telling myself that I am fine.
I hope that you are feeling a little better knowing that weird symptoms do not mean the end of the world.  I hope that you will get a simple explanation from the neuro and that it is indeed something that will eventually go away.  Be hopeful and try to think positive.  It's so hard, going through this, I know.  It's something you don't think could happen, to get a virus and then be so sick afterwards.  Write anytime and I am thinking of you.

[ginak]

I have been going through everything that both of you have been going through since July of 2008. It started off with a rash and a virus. It went from that to a sinus like infection, aches and pains in muscles and joints, numbness, tingling, and muscle twitches all over, eye floaters and blurriness. I have had 2 brain mris, 1 cervical mri, bone scan, EMG/NCS, spinal tap (high myelin protein), and have gone to 13 doctors. All I have so far are high EBV titers ( all 3 numbers), low Vitamin D, 2 ct scans of the abdomen, EGD on yesterday, and just took an Igenix lyme test. I also know that I have a low CD57, which is indicative of chronic lyme disease. I have no idea what I have. I have never heard of anything post viral going on this long. I want answers and don't have them. I would certainly advise you both to make sure that you get full and complete workups. If you have to go to 1000 doctors before you get answers, do so because your health is not worth it!