Need your input: I am not asking for a... - My MSAA Community

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Need your input

Lovetogolf profile image
13 Replies

I am not asking for a medical opinion. I am hoping to get this soon after studying the Epstein Barr virus, MS and my symptoms. Have any of you been diagnosed with the Epstein Barr virus? Do any of you have tinnitus, iritis, vertigo and tendons? I started to have numbness in the back of my neck, shoulders and arms for over the past week that won't go away.

Any input would greatly appreciated. I am trying to determine what is going on with my health. I have been to 4 different doctors and had multiple blood tests. I am going again next week to see if they will test me for the Epstein Barr virus.

Thank you in advance,

Wayne

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Lovetogolf
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13 Replies
falalalala profile image
falalalala

An acquaintance of mine was diagnosed with Epstein Barr virus shorty after getting vaccinated.

She suffered some paralysis in her limbs along with numbness in her extremities and was hospitalized for a bit.

Last I heard, she was on her way to recovery.

I hope you get answers soon.

Lovetogolf profile image
Lovetogolf in reply to falalalala

Appreciate the input. Thank you.

Frances_B profile image
Frances_B in reply to falalalala

Are you sure you mean EBV? The symptoms you have mentioned that your acquaintance had are those of Guilliam Barre Syndrome, not EBV. There have been some incredibly rare cases of GBS which were thought to have been triggered by vaccinations - and I'm not doing a conspiracy theory thing here. If EBV was caught by someone or reactivated by something it would produce glandular and sore throat symptoms etc (as per the link in my other comment), not paralysis and numbness.

kdali profile image
kdali in reply to Frances_B

It happened to me as well. EBV status was checked during a GBS rule out post vaccination, despite my absence of cold symptoms.

falalalala profile image
falalalala in reply to Frances_B

HS! You are right.

Thanks for the correction!

It was guillain-barre-syndrome.

Strangely enough, she was the second person I've met with that problem.

DM0329 profile image
DM0329

I had mono (EBV virus) when I was sixteen years old. I had a lot of ear infections as a child too (got many tubes in my ears) but as a child I had a lot of ringing in my ears as well. And, I was seeing a ENT Specialist, but I was 9-10 yo and it was in the 1970's. My ears checkfd out fine.

But, I was dx with MS over Memorial Day Weekend in 1994, when I just turned age 26. There were NO tx options then, but I saw a general neurologist (I was sent to him to rule out MS by my PCP).

At that time, my mother was dx with breast cancer (mom had many other health issues too). I recall coming home from work each night and getting in a hot bubble bath to cry. Needless to say, before MRI's were invented, a "hot bath test" was used to be used to rule out MS dx!

Prior to my MS dx, I had been having vision problems at work. I worked at an insurance company located in a strip mall, and popped into a near-by optometrist to have my eyes checked. I passed the eye color test, etc. It was suggested that I get my blood checked.

I called my PCP's office. At that time, they recommended that I see an ophthalmologist. However, a few days later (now remember I am experiencing emotional stress with my mother's breast cancer dx) and taking hot baths each night.

Within a few days, I called the PCP again saying that my sx have gotten worse. I'm thinking about going to the emergency room. They made a more immediate appointment. I told the doctor that I was experiencing problems with my vision. It was almost like double vision, but I was also having vertigo and balance issues.

He examined me for what felt like forever (he was checking the movement of my eyes). He found that my LEFT eye wasn't moving to the LEFT side as it should. At that time, he said he was referring me to a neurologist because he felt that there may be something wrong with my brain or brain stem, and to rule out MS. At that time, I said, well the right side of my face was numb a few weeks ago, like a shot of nonvaccine. But, now it's not.

I had classic multiple sclerosis symptoms. It was an easy dx. And, the neurologist felt strongly in his dx. I had "a few white spots" on my MRI in 1994. And had a positive Babinski response on my left side.

In 1997, I started self-injecting Avonex. After twenty five years, I retired early due to the MS fatigue and cognitive dysfunction mostly. In 2022, after menopause, I wanted to change my tx (my MRIs have been stable since 2003),

Due to the global pandemic and my stable MRIs, I decided on Aubagio. I love the ease of a daily pill. But, not so much the side effects. Unfortunately, I'm one of the 15% of folks who is having substantial hair thinning/loss. But, hair is so over rated anyway! LOL

Best of luck as you search for answers. I hope you can get in to see a neurologist soon. Yep; MS sucks. But, there are many treatment options today! Be patient and persistent!

Blessings! 🙂👍🙏

Lovetogolf profile image
Lovetogolf in reply to DM0329

Thank you for providing me with your story. I hope to finally get answers in the upcoming weeks.

kdali profile image
kdali

I had a nasty case of mono, but most people get exposed to EBV in childhood and never know it from any other cold.

I've had numbness on the back of my body, sometimes with vertigo if Lhermitte's sign is really strong, and vision issues are usually my first warning sign.

Lovetogolf profile image
Lovetogolf in reply to kdali

Appreciate your reply. The Lhermitte sign sounds like the tingling burning sensation that I feel down my neck into my shoulders and down my arms. I hope to have an answer in the upcoming weeks.

kdali profile image
kdali in reply to Lovetogolf

Are there symptoms increased when you bend your chin down to your chest? Many things can cause the sign. I'm not sure about a burning sensation with it, maybe others have this, but I don't, it's more electrical...and when it's really going, I can "hear" it in the ear that sometimes gets tinnitus, which sounds bonkers so I don't mention it 🤣 Sounds like standing under power lines in a big city. Yup, bonkers. Anyway, since I had this sign, I had to be ruled out for a spine tumor and a neurosurgeon was the one checking me out at that time. I'm not sure how getting EBV labs done would help you with this.

goatgal profile image
goatgal

The link between EBV and MS is still theoretical so I'm not sure that a test for the virus will provide the answers you seek. When I self referred to a neurologist after decades of bizarre symptoms of short duration, I was diagnosed with MS (blood work, MRIs, LP all confirmed it)...but the blood work also tested for all the tick borne diseases because many of them have weird symptoms. If you haven't seen a neurologist, that should be on your list of consultations. I hope you don't have MS, but keep us posted.

RoyceNewton profile image
RoyceNewton

G'day, I am sorry to tell you that your search will provide no conclusive results. During my 20+ years I have seen numerous scientists study this and they have come to no firm conclusion for or against.this is one of the many enigmas in our illness. Keep searching if YOU must but, expect failure that way that way it will not disappoint YOU to much.

I have found taking an attitude of, "this is meant to test me, a secret test for somebody but a test nevertheless.

"Good luck and be strong,

Royce

Frances_B profile image
Frances_B

None of the symptoms you have listed are those of a current EBV infection. Note that around 95% of the adult population will test positive for EBV antibodies, meaning that they have had an EBV infection at some time in the past. Many people get it as young children and it's never picked up as EBV, but just thought to be another childhood sniffle/flu-y thing, or it can even be completely asymptomatic. It is a virus that once caught can lie dormant in a person's body and be reactivated at some time in the future.

my.clevelandclinic.org/heal...

There has been research which shows a very strong link between EBV and MS but overall it is agreed by experts that there are other multiple factors which must happen or be triggered in some sort of specific sequence for MS to be an outcome. If EBV alone caused MS then 95% of the population ought to have MS and that just isn't the case - it's about 1 in a 1,000 people get MS.

What do you hope to achieve by being tested for EBV when none of the symptoms you name are those of an EBV infection? The only thing it might tell you is whether you had an infection at some time in your past, but that has no relevance to the symptoms you have listed.

I'm also guessing that because you have posted in a forum for people with Multiple Sclerosis you might be thinking that you have MS - if your doctors suspect that you might have MS they would send you for an MRI scan (and not an EBV test which won't prove anything except maybe a past EBV infection). However, the symptoms of tinnitus, vertigo and numbness can all be caused by many other things. For example, vertigo may be related to MS, but is more likely to be Benign Paroxysmal Positional Vertigo - which is very common and easily treated by a knowledgeable physiotherapist. Or it could be a long lasting low-grade ear infection which just keeps hanging around. Also, numbness in the area you mention can have many different causes e.g. muscular tensions, pinched nerves or "squashed" discs, and they certainly don't have anything to do with EBV. The other problems of tendinitis and iritis that you mention are not going to be related to MS.

I hope the "studying" you've been doing is not swotting up on any books written by that charlatan who calls himself the "Medical Medium" - his theories do not stand up to any sort of proper scrutiny, and his fawning sycophants seem to be people who think that celebrity endorsements constitute proper recommendations. His writing has just enough of a tiny germ of relevance and smidgen of "science" so as to sound plausible, but despite his ridiculous claims about being some sort of "sensing being" his main purpose is to separate people from portions of their bank balance and having it take up residence in his bank accounts. (And that's the extremely polite version of what I think of his conman's garbage!)

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