Join Date: Sep 2012
Location: Chicago, IL USA
Help!... MS, EBV, etc, etc, etc?!
Hi everyone- I'm new and need advice..
I am a marathoner, and have a very slight hypothyroid (0.025mcg levothyroxine).. I was training this summer and months into training one run was particularly hard. My body just wouldnt "go". I had run 2half marathons and a duathlon in the spring and barely trained
And had no problems, so this was of concern to me. My pcp was on a mission trip to I went to see an endo, who checked all possible thyroid issues and said It was not thyroid. My CBC was fine, even with temps ranging from 96-103, extremem fatigue, muscle/joint pain, and left sided pain from neck to shoulder to arm and fingers. Almost like nerve pain.
Went to a new PCP and he checked me for everything under the sun; lupus, lyme, RA, etc etc etc... Chest xray, echo cardiogram, thyroid ultrasound... All fine. My symptoms were getting worse. Headaches, nausea, loss of appetite, stiff neck, back pain, joint pain, and still left sided neck/shoulder/arm pain and strange lines!! These lines are horizontal/diagonal ony left forearm after carrying the baby i care for or anything very heavy. They are not raised, only indented, and always the same look/pattern. No rash, etc. Many doctors have looked at my photos and have no idea...
I started getting bad brain fog when I was really tired. Go to bed at 8pm and still take a 2hr nap in the middle of the day. Then I told the doc I fell off my bike months ago so he ordered a brain MRI... Which came back abnormal, with ONE "spot" in a susicious location, so they say MS.. But ky doc said the spot is "SO early onset" that it "probably is not causing the symptoms" . My mom has Fibro and is n RN and says "its def not Fibro.."
I did just come back positive for EBV but my neuro
Said "that makes sense for the fatigue and some oter things.. But not all of it." he wants a spinal tap done to co firm MS an also wants me to see an infectious disease doc to see what she wants to "add" to the spinal
I get numbness in my pinky on my left arm, some facial numbness sometimes, and other stuff.. He did a cervical spine/neck
MRI, and nothing...
I have a bump on my lower spine that hurts when I touch it, and there is decreased sensitivity there (he pricked it and the skin around to compare). He's not concerned about the bump, but is concerned about the nerve type issues that again, are NOT affecting my right side at all.
I demanded another CBC because if I have another virus or something terrible thats assocoated w EBV (lymphoma, etc..) I
Want to dO anything in my power NOT to miss it.
So my current symptoms are: headache, sometimes shortness of breath, anxiety feeling, nausea, easy fullness/lack of appetite, stiff neck, sore back, bump on lower back on the spine, strange arm lines/indentations that come and go, fatigue, itching/rash type feeling above collar bone on left side, sore bones/joints, some mental "fog", sometimes off balance/dizzy.
Positive results: Abnormal brain MRI (one 'spot'), low but not deficient Vit D, borderline low b12 (im a vegetarian who eats healthy), high ANA, positive for EBV
Tested for: glucose, creatinine, TSH, T4(all), CRP inflamation, CBC, ANA, Anti-ds DNA, Cortisol, Lyme, Lupus, RA, and 15 demyelinating diseases including scleroderma.
So what do I do from here??... I am going to see the infectious disease doc to talk about the EBV, but my neuro still wants to do the spinal tap to confirm MS as well as see if the ID doc wants to "add anything".
Like I said, my mom has had Fibro for years and says its not the same as her symptoms, and my dad has had MS for 20years (based on MRI when he was my age) but has never had symptoms. I have many other autoimmune issues in my family- thrombocitopenia, cancers, etc...
I have also had very STRANGE menstral cycles for the past 4months.. And I have been 100% perfectly regular since I was 12. I am now getting spotting (NEVER ONCE happened prior to all this) and have short, darker, lighter cycles when it does come... I have taken 3 pregnancy tests in the past 4 months because it's THAT odd for me.