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Autoimmune Disorders Community
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667611 tn?1226005294

Missing a Piece of my Puzzle

Hi! I'm a 23 yr old female looking for answers. I'll just go ahead and describe all of the symptoms I can think of, and I welcome any advice or opinions others may share! Thank you!

I've been having medical issues since around age 12. I got infectious mononucleosis caused by Epstein Barr Virus. Got a positive test result from the doctor and recovered a few weeks later. Funny though, ever since then or around that preteen, early teenage stage-I have been chronically tired and fatigued. It doesn't matter how long or little I sleep or what routine I have, regular or irregular-I am just tired, pretty much all of the time. I do have periods of days or weeks where I feel fine-like I couldn't be healthier, but I mostly feel tired. If left, I can sleep for days, only getting up to use the restroom and to take a drink of water. And I commonly have problems waking up. It's almost as if waking up and moving for the first time out of sleep is painful. It hurts to move and I just feel sooooo tired still.

I also used to get migraines as a teen that I treated with imitrex. They disappeared after a couple of years and I really haven't had another headache until now. During the past month, I've had several mild migraines, almost one everyday, that I have successfully treated with otc drugs--but I do find it odd that I just started getting them for no apparent reason. They are usually located around or behind my eyes.

Along with the above mentioned symptoms, since about the age of 17 or 18, I have also been achy. I have widespread muscle aches throughout my body-the best way I know how to describe it, is that feeling you feel a few days prior to getting a bad cold or the flu. I also have painful, achy joints, but with no swelling or visible inflammation. And I often become stiff and rigid. I used to be a lot more flexible and I try to stretch, but it hurts now. I am looking into taking beginner's yoga as I'm told this will help.

I experience Raynaud's in my fingers and less often in my toes. I feel electric shock sensations in my legs and feet which often causes twitching and frustration on my part--as no amount of massage or pouring water over the area helps. I also have muscle spams and twitchy muscles-they happen all over, but mainly affect my legs. I also experience numbness in my legs, mostly the right leg. I occasionally have blurry vision and stabbing pains in my eyes, although this is one of my least common symptoms.

Another odd thing I noticed about a year ago, is now sometimes when I stand, I feel an odd tingling/tickling in both of my legs that makes me feel as if I am about to fall. I have never fallen, but almost. The feeling disappears after a few minutes. Similar to the description of cataplexy, only it doesnt happen when I'm laughing/angry/crying etc.

I also have mental fogginess/grogginess sometimes. I feel like I can't think clearly or remember things. It's a little dissociative sometimes, like I don't feel like myself. This feeling goes away within a day or two usually.

Hmm, I've also have times when  I feel as if i am about to faint-this has been happening since I was 7 and no doctor has ever really given an explanation. I've never actually lost consciousness, but i see stars and feel like I am about to pass out--at which point I either lay down right away or sit with my head between my legs. sometimes this can last up to 10-15 minutes, but i always recover. It happens in normal situations when I am not emotionally charged. it's like my blood pressure just suddenly drops for no reason. i've also turned slightly blue during a many of these episodes.

I have also had an active CMV infection 3 years ago, a positive ANA test that I was told was "highly positive" and I have been checked for thyroid disorders, and various autoimmune diseases such as lupus and RA, but all have come back negative. I was also tested for narcolepsy about 7 or 8 years ago, with a sleep study test and the results were inconclusive. After everything, I have been told I have fibromyalgia, but was never tested for MS or any other neurological disorders--besides narcolepsy.

I'm now seeing a new neurologist at USC who ordered a bunch of bloodwork and an MRI of my brain, if my insurance approves.

But I really just want to know what's up with me. I have a good life, but work and school have been difficult for me to maintain because of how I feel physically. I have seen both a psychologist and psychiatrist and I have no problems with depression-besides the occasional blues from everyday stuff like a argument or a break-up or some such. Besides that, I am a happy girl with a good life overall that I am thankful for--but at the same time, I wonder and wonder what all of these things i feel mean. I sometimes wonder, does everyone feel like this? And for some reason I just can't deal with it? And if that is the case, then why can't I deal with it, while everyone else can?

So, if anyone has advice or an opinion, I would appreciate the input. It would be nice to hear some thoughts from people with similar experiences. It's always nice to know that one is not going mad :) Also, is there anyone out there with MS that had issues like mine prior to diagnosis? MS has been mentioned to me a few times-that very often, young women like myself are diagnosed with fibromyalgia and it's common for it to come with MS or be mistaken for MS. Anyhow, looking forward to replies! Thanks for reading this- I know it was long.

8 Responses
664341 tn?1282115950
You should check out the MS forum here on Medhelp.  Even w/out a diagnosis, you may see that there are many who can relate to your story.  I, for one, am one of them.  I have yet to be officially diagnosed with the disease, but that is what my docs are leaning towards.  I had a brain mri that confirms it, but they still want more testing! ugh!  I have experienced similar symptoms for the last year and a half now with a gradual decline since onset.  Pain, numbness, weakness, balance problems, vision problems, migraines, carpal tunnel, tingling all over, depression, are just to name a few.  NO, it is not normal to feel this way, so do not beat yourself up about it.  Actually, if you've been experiencing these symptoms as long as you have, and are still not severly depressed, then I believe that you are dealing quite well!  Ask your doctor about MS, and if you do have the brain MRI, then you will definitely get some answers.  Best of luck to you, and remember to check the MS forum.....it helps to know you are not alone!
Tiffany
667611 tn?1226005294
Thank you so much- I will definitely check out the forum. And really, thank you again for your reply. I'm so happy I found this site so I can finally talk to some other real people out there who might know what it's like. :)
572651 tn?1530999357
Hi Lowen and welcome to this forum.  Most of your symptoms sound similar to MS to me, but I'm not a medical expert.  Some of the other things make me go "hmmmm.."

It is always possible to have more than one immuno disease  going on, such as fibro and ms.  I'm sure some more knowledgeable folks will be along to give their two cents worth.  What's up next for  you with the doctors ?  

No, feeling like this is not normal so don't give up looking for answers until you are satisfied.

Welcome again! Lulu
667611 tn?1226005294
Thank you Lulu! :)

As for my docs, right now they are wanting me to have an MRI of my brain. This is wear I take a deep sigh....as they said that they would first have to ask my insurance and that when my insurance said it was okay, they would call and then I could get the MRI. I saw the doc Tues 10/28 and have not heard back as of yet. I don't know how long these things usually take, but I hope they call back with the go-ahead. Or else, I'm not really sure what to do, as there is absolutely no way I can afford an MRI out of pocket. But, I have my fingers crossed and am thinking good thoughts! :)

My neurologist was also particularly interested in the fact that I had an active CMV infection that caused mono-like sickness. I was very sick for 2 weeks and was in and out of the hospital. It was 3 years ago, about a week after a breast reduction surgery. I thought it was normal to have lowered immunity after surgery, but she requested that I attain a copy of the bloodwork and test results and seemed very interested.

I also had a bunch of bloodwork done the day I went to the doctor. I'm going back in Dec.

Avatar universal
I have Fibromyalgia.  I've never had an MRI of my brain, so I'm not sure about MS.  I do know they mimic each other.  You may have Fibromyalgia.  Your symptoms are exactly like mine.  I am 24 and I was diagnosed almost 3 years ago.
Avatar universal
Hi.

I'll be very curious what you come up with.  My 15 year old daughter is experiencing many of the same symptoms you describe:  the severe fatigue that never cleared up after mono, dizziness, numbness, tingling, headaches.. in her case she also has episodes of blurry vision & now--spontaneously!--she has developed a giant bunion on one foot.  Drs spent all summer testing her for stuff, especially MS, but never came to any conclusions.  This past week she got a positive ANA test, so now she'll see a rheumatologist for first time.  But as I read descriptions of lupus and ra, etc, they don't seem to match her symptoms nearly as well as MS did.  So I'm very confused.

Please keep in touch--maybe we can help each other!

dazedmom
728965 tn?1266373645
I know it's been awhile since you posted.... but you are me! I know exactly what you are going through. The positive ANA, mono, narcolepsy, they think I have Fibromyalgia. But I've had all the brain scans and ****, don't have MS. Thank the Lord above. I have a feeling however that a positive ANA test can mean nothing at times. I have obsessed over the fact that I had a positive ANA, and they will not test again.

Maybe someday they will figure something out about the things that Mono leads to. I wouldn't be surprised one day if it came out that Mono didn't cause some Autoimmune Disorders itself. There has to be some kind of link. If we have the same things, others have to also.
500238 tn?1255131214
Uggg, I hate mono.  My woes also seem to have begun with mono.  However, I initially thought the mono caused the problems but am now wondering if it was not already occurring very mildly and catching mono was the final blow.  In March of 2008 was when I found out I had mono.  Two family members fully recovered and I was left with severe arthritis in my hands and feet, back pain, urinary tract infections, fatigue, GERD, all that fun stuff.  It's now January 2009 and the only time I have relief is when I am on Medrol (a steroid) which you can only take so much of per year or pain killers.  I have done a lot of research and did test positive in October for thyroid peroxidase antibodies, meaning most likely that I have Hashimoto's thyroiditis, an autoimmune disorder.  I also became anemic and have had Raynaud's phenomenon for months now for which I will soon be seeing a vascular surgeon.
Viruses are suspect in many of the autoimmune disorders, including cancer.  Multiple Sclerosis is believed to be triggered by more than one factor and one of those considered to contribute is the EB virus that causes mono.  Basically if you have a genetic predisposition to MS as well as many of the other autoimmune diseases and are unlucky enough to be exposed to the other environmental factors that may contribute, you are then given the unfortunate gift of now having the full blown disease.  
I hate to say it, but if I were you I would ask about paying a certain amount per month to pay off the MRI and have it done.  If your doctor was wise he would base the MRI on some generic reason because insurance loves to use the possible MS against you to deny further treatment should you end up with MS.  Having family members who are involved with insurance, you as a patient have many more rights than your insurance would like you to know.  If they can avoid having you tested for something they will, but they also fear being involved in a lawsuit should you press the issue and will very often concede to letting you have it done.  Insurance companies will often deny because they know the patient won't press the issue, but they have no legal right to continue to deny when it is based on sound medical advice and can even be held liable for refusing to allow a test and having a patient suffer consequences as a result of that decision.  Now is the best time to review your insurance policy and really know what you bought.  There are just as many loopholes for you the patient to get your way as there are for the insurance company to attempt to get their way.  When you hit a brick wall, ask to speak to an underwriter regarding the problem.  If you continue to hit a brick wall, call your state department of insurance and make a complaint.  
I also want to add that sometimes we think the insurance companies run by the people or public are great for us as the insured.  Be aware that many of those companies while they can be good in paying for your health, also have no watchdog and because of the way they are set up they are not required to hold to many of the state insurance standards which makes it very difficult for you as a consumer to then fix a problem because the people you have to speak to in order to complain or fix the problem are the very same people who work for your insurance company, just like the HMOs.  One of the biggest problems is that we now have insurance companies who are managing themselves and when a consumer has a problem and are given a "grievance hearing" to try to work out the problem, the insurance company in many cases gets to have half of that grievance committee be from their company.  Can you imagine if our justice system worked the same way?  It would be like putting a serial killers family on half of the jury.  You think you would trust the outcome?
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