EBV and neurological symptoms

[ginak]

Hello All,

I know that very few people post on this forum, but since I have been dealing with this for the last 10 months, I wanted to know if many of you have or are having a ton of neurological symptoms with the EBV dx. I am currently having a ton of neuro symptoms. After 20 physicians, an alternative doctor, and countless tests, I am a little discouraged. I don't seem to have a "classic presentation of EBV, meaning no enlarged lymph nodes or flu-like symptoms. My symptoms include:
1. LIGHT MIGRATORY TINGLING IN DIFFERENT PARTS OF THE BODY
2. NUMBNESS IN HANDS WHEN WAKING UP IN THE MORNING.
3. OCCASIONAL PAIN IN MY LEFT SHOULDER.
4. PAIN AT THE BOTTOM OF BOTH FEET WHEN WAKING IN THE MORNINGS.
5. RIGHT SHOULDER STARTING TO ACHE, LOWER BACK PAIN
6. RASH ON NECK THAT WAS PRESENT PRIOR TO ALL OF THIS.
7. FLOATERS STILL IN RIGHT EYE
8. INTERNAL TREMOR
9. TINNITUS IN LEFT EAR AND PULSATILE TINNITUS IN RIGHT EAR
10. LATEST SYMPTOM-FEELINGS OF HEAT AND COLDNESS IN BOTH EXTREMITIES, BUT MOSTLY ON THE LEFT SIDE.

Just an FYI, I have had a full work-up for MS and as of today, I have a clinical dx of lyme disease. I don't feel very secure in this dx and just wanted to hear from others who may be dealing with EBV and may have some of the same type of symptoms.

[happyguy12]

i have every symptom you have and no meds also i have tingling in the groin area white tongue went to 2 id doctors no help and ive had it for a year now. ebv causes mind problems i almost got suicidal.

[ginak]

Thank you for your words of encouragement. I have been going through this for 10 months now. I wish I could say that I felt that things were getting better, but I don't. The tremors and the numbness and occasional tingling drive me crazy. Also, the constant buzzing in my left foot doesn't seem to go away much at all. I just pray that this is not something else more serious. I honestly don't know anymore. Thanks for taking the time to respond.

[margypops]

Sorry mistake I dont have this ,, sorry for the intrusion guys ....back to square 1

[margypops]

Oh crumbs this sounds like me, the Doctor just told me he didnt think I had Lyme or low Throid...he said Mono or Epstein barr, I never heard of them.. I just read the above post....will it just go away, he didnt offer any medication...

[9DodgeFan]

Hi ginak (and others).  I don't know how much this will help, hopefully at least a little.  It's been over a year since I was diagnosed with EBV (May 2008).  It has taken quite a while, but I feel like I'm finally getting my life back.  I no longer have any tingling or trembling (I did for a little while after first getting mono).  Of all the symptoms you listed, I guess the only one I have is the lower back pain/soreness.  So I'm definitely not a doctor, but maybe your body needs a little more time?  I'm not really sure where I'm going with this; I guess I just wanted to give you all a little encouragement.  To jlhp, I hope your IDS visit goes well.  I saw a very good IDS who knew what I was up against, and although he didn't prescribe anything, he gave me tips for trying to become active again (I'm WAY out of shape now, so I need to work on that!).  Anyway, I hope everything goes well for all of you!

[jlhp]

I was dianosed with ebv 3 months ago and i still can't seem to get my energy back. I feel flushed at times and have lost my appetite. I also went to a neurologist for weakness in my arms and legs. Nothing was found. My blood work has also proved unhelpful. My primary wanted to put me on an anti-depressent and told me im fatigued and we may never know why. I too feel depressed like i'm losing my mind and its all in my head. I told him no on the meds, that if someone could explain what is wrong id be fine! Im going to an infectiuos disease specialist tomorrow as my last hope.

[Cheri21157]

Hi, I have a lot of the same symptoms that you do and no dx. I have seen a neuro who specializes in ms and he doesn't really think I have that, all my bloodwork has come back normal. I am waiting for my results from my lyme test. All I know is that I am getting very depressed and going crazy with feeling this way with no answers. If I were to have ebv would it come on fast and strong and last this long - I have been feeling this way for 3 months now?

[ginak]

I am glad everything went well. I hope you get some answers as well. What's interesting is that your mris are normal. If you dr finds an abnormal reading on your mri, would he really be able to dx anything? That is the thing with lps. Sometimes they can reveal quality information and many times they just dont. I had one and it didn't reveal enough for me to be dx'd with anything so it still left me in a state of confusion. I hope this is not the same for you.

[Padro46]

G
Hope you are doing ok--LP was done as planned on Tuesday--Now awaiting results-Did really have any problems, Of course I have been lightheaded for 18 months now so would not know if it was the LP or not.  Hope you get some answers along with myself  Padro

[lvfrogs]

I agree. When I contracted this 4 years ago, I was in almost perfect health, never went to the doctor. Since that time, I have had pulmonary problems, cardiology problems, the CFS, neurological issues, gastro issues and gyn issues. NONE of which I had before the EBV, so I know it has affected my body in many ways. Finding doctors who can help and believe is the hardest part. Good luck and let me know what happens with you!

[ginak]

Thank you for taking the time to respond to the post. I think there is a lot more to this disease and many people don't realize all of the symptoms that can be associated with EBV.

[lvfrogs]

I don't know if this will help or not. I do not have flu-like symptoms either, but I do have some of the same symptoms as you do.  Tingling, numbness, pain in left shoulder, floaters and I have had weird feelings of heat.

I thought the numbness and tingling was due to low potassium, but not totally sure yet. I did start on potassium supplements and it isn't as bad as it was.

I hope someone else will come along with more answers!