am i crazy?

[arethereanynicknamesleft]

I hope there is someone out there that can possibly help me!  I am a 28 yr old female and am about at my wits end please if anyone has any suggestions please I would love to hesr them.  My story begins the middle of August this yr I was diagnossed with staph infection on my face and legs, as this started to clear up (after about a week of meds) I started to get terrible head and neck pain I have also had nerve pain in my legs feet arms and hands however it is not a shooting pain it is always in the exact same spots.  I have had a ct of brain mri of cervical spine all o come back ok.  I have done almost two months of physical therapy and I am getting nowhere the only thing thsat seems to be helping is neurontin.  this is a very condensed version of my story but please anyone with suggestions please help I have hadebetween dr appts and physical therapy over 45 appts since august 21 I need help!

[Tuckamore]

Thanks for the information. I did more research and it does indicate that a CT with contrast will show brain lesions and tumors. MRI will also diagnosis the condition. My step-father had a CT of his brain and they missed a brain tumor until they preformed a CT again but this time used contrast. He lost 6 months of treatment because they did not use contrast the first time.

Anyway I will keep looking because now I am even more curious as to why we have conflicting information.

I understand why you would question if your body has aged faster than norm but some ppl just have a few bad "parts." I have had a few "bad parts" too. Pardon the terminology.

Best Wishes, Tuck

[arethereanynicknamesleft]

tuck

thank you for all the info....over the last year they have diagnosed cfs....I did do some research on ms and some say that ebv can be a precurrsor possibly...it also says that lesions may only be picked up by mri not ct....my mri was of cervical spine only...and u are right it is very frustrating not having answers...six years ago I went thru this same frustration when my obgyn at the time finally after six years of pain and agony finally agreed that I needed the full hysterectomy I had been begging for.  I sometimes wonder if my body hasn't aged way faster than the norm....lets face it I had a full hysterectomy at 22 yrs old...

[Tuckamore]

Hello Again,

Thank you for the update and more information. It sounds like you have seen a fair number of physicians. MS would show up as lesions on a brain MRI or CT with contrast. Fatigue, weakness and shaking, uncorrdinated are often early SX of MS BUT those SX can describe a multitude of diseases.

When I searched Epstein Barr I discovered a support group for the condition. I was surprised (though I probably should not have) to learn that it can become chronic and produce a multitude of symptoms. For a person that has had this virus it can make them susceptible to other conditions such as Mono and some physicians beleive Chronic Fatigue Syndrome. When you goggle Epstein Barr it is the 5th selection on the page and says "Welcome to the Front Page-Chronic Epstein Barr.." I am not suggesting that you have the chronic form of this disease but it is a very good site and offers a lot of information. The following is an exert from the introduction page:

BEGIN QUOTE "In recent years, some doctors have even ascribed the virus to be one of the main causes of Chronic Fatigue Syndrome (CFS). However, it is most elusive and unique in its association with another disease, which has come to be known as “Chronic Epstein-Barr Virus Infection” or “Chronic Epstein-Barr Virus Disease” (CEBV). Interestingly enough, the disease was only recently recognized and is even disregarded by some doctors as pure fiction, in spite of the large amount of sufferers who have been coming forward. To them, CEBV is very real, very destructive, and potentially life threatening. It is the goal of this foundation to inform the public about the dangers of this infectious disease with the hope that eventually research into a cure or treatment alternatives can be funded." END QUOTE

I would investigate all the possibilities that are associated with EBV. I could not find a relationship between EBV and MS. Please feel free to PM me if you would just like to vent or chat. I know how frustrating the search for answers can be and many others on this forum also know that frustration. Hang in there, you are not alone. Best of luck and as always, take care, Tuck

[arethereanynicknamesleft]

hey guys thank u for all the comments!  I guess I should clarify..not onlu have I been to my family dr but a neurologist chiropractor a dr of sports medicine and a dr that practices holistic medicine.  they have never tested me for lyme disease, they have tested for west nile, epstien barr, did total blood work ups I did test positive for epstien barr over a year ago and I am staring to get curious as to ms does anyone know much about ms?

[Tuckamore]

Hi Any,...And Big Mike

I am sorry I did not read your post thoroughly when I responded this morning. I don't know how I missed the staph infection but I did. At any rate I am sorry that you are having so many post-infection issues.

I assume you had MRSA as Big Mike did. What a horrible story Mike. I am very sorry for your traumatic experience. I wouldn't shave either.

I think Jaybay has offered you some good advice. I would certainly want to know why you are having nerve pain. Did the staph damage your nerves? That is extremely rare but it does occur. And nerves do take time to heal. I would ask more questions of my physician. Jaybay is correct that Neurontin is a very good medication for nerve pain but pain medications should also ease the pain. A close family member has a brachial plexus injury (nerve) and she is receiving both Neurontin and a strong opiate, without both medications her pain is unbearable.

Good luck to you. Please keep in touch and let us know how you are doing. We are here for you. Take Care, Tuck

[bigmikesalive]

From lurker land I'm blown away by this post because I have expereinced MRSA for 2 years. It went from my left side under my arm to my inner right leg to my inner left leg to my left under arm to my face wher it displaced my jaw and blew my ears out and closed my eyes, and them procceded to do it all again,

Oh do I feel for you 2, besides being scarred becasue everytime I went to the hospital they put on the white suits and put red tape across the doors so no one could come in, oh do I feel for both of you because you know what serious pain we all were in.

I don't share many of my life this much as a rule butt this I fear comoning back so bad that I fear to shave and never ever shave my face all the way down, and fear that smell in my nose that proceeds every infection. I take 3 showers a day to this day.

At it's worst it takes over 25 needles to go around the celluloses ( lidocaine ) and it's so painful that my doctors where stunned that I never passed out, when they cut into my body to put the drains in, which would close constantly and they would have to do it all over again.

It got so bad I had my own room in the hospital for 2 years, oh my heart goes out to you because this is real BAD and I mean BBAADD pain.

Take care of yourselfs, and as you know there is nothing you can do to stop it from returning untill your body kicks it out, I'm in tears just from writing this to you, this is real fear for me, lucky I see a shrink 2 times a week hahahaha.

When it was in my face 3 times I agree with you it should have been at halloween because know one could recignize me, and it didn't help in trying to get a lttle somthin somthin from ladies.

Take care of your selfs

Big Mike

ps I look a lot better now ladies hahahahahaha

[Jaybay]

Neurontin is a specific pain management medication for nerve pain.  Since the neurontin is helping, that tells me you probably have experienced nerve damage from the staph infection.  I agree that you probably should at least consult a pain management physician, but don't be surprised if there isn't much more to be done that continue with the neurontin.  The physical therapy likely won't help your pain, but will help keep you moving.  

What flavor of specialists are you currently working with?  If you haven't consulted a neurologist, that might be a good approach to take since your problem is nerve related.  In my personal experience, nerve pain causes some of the worst pain a body can experience, and only time - a LOT of time - will tell if those damaged nerves will regenerate enough to get back to normal, or close to it.  

Do you mind my asking what caused the staph infection to begin with?  The reason I ask is because I had facial and orbital cellulitis earlier this year.  It started with a stupid zit right between my eyes and spread from there.  I don't usually get break outs at my age, but know enough to leave these things alone when they crop up. The infection spread to both eyes and the pressure on my brain caused horrific headaches.  Too bad it didn't happen at Halloween - I was pretty scary looking with big, purple swollen eyelids.  :-\

Anyway, after massive amounts of antibiotics, the staph infection was gone but the headaches lasted a few more weeks.  The doctor said there was still enough swelling behind my eyes that caused the headaches, and that I narrowly avoided meningitis.  Glad he didn't tell me that at the time!

[Tuckamore]

Hello and welcome to MedHelp. I am sorry I haven't a lot of time to respond to your post. I'll have more time later and will return. But have you been tested at least three times for Lyme's Disease? It is a possibility with your symptoms.

Again sorry I have an appointment but I will return later to respond in more detail. Take care, Tuck

[jollyman069]

maybe you ought to go to a pain mangement clinic.. i have chronic back pain from herniated disc and went 11 yrs through dr's and physicall therpy none really helped and finally got a family dr that said hey you need a pain specialist.. now i am not completly out of pain but it is under control and i can now have a almost normal life