MS, Optic Neuritis?NeuropathyNMO, Suggested FINALLY?!

[sickntired4years]

Please anyone someone help I am lsing my medical coverage soon and need some answers. I went from being 160 lbs to 115 and have had 5 oral surgeries, before I have another one I need answers please!

I lived in a rural community and four years ago, I had a dental filling done imroperly, yes a dental filling started a snowball thats a avalnche. Failed root canal, cyst improperly removed, with no antibiotics at the time. Then Avelox, shot of Rochephin, then 72 hrs later horrible fever and sickness, treated with collidial silver. I trusted the wrong Dr. now, 5 oral surgeries later, am in need of another one. Bone graft in the jawbone and being told I need a major jaw reconstruction. I will give the cliff notes version. Been through many specialties and have so many issues I'll tell you what I can remember.

Have had PICC lines and I.v meds. Envanz (emitriptin)? Vorcanazole, rocephin 14 days piggy back, EVERY class of oral antibiotics except Vincya. Also, I have a neighbor who is VERY ill worse than me cancer survivor. She rcv. Vincaymycin for supposed "endocardidtis" Both of us are being jerked around, pushed off, left for dead. WE HAVN'T DIED, THANK GOD I AM ON A Mission.

SO, currently I have diagnosed with and suffer from:

atypical Trigeminal nuralgia, Cronic EBV, Kidney Issues (recently) following a, VERY HIGH IGM level, amenima (that has come and gone,for myself and my friend) TMJ ( previous), damage to 5 cranial nerves, optic neuropathy, was told possible endocardidits, taccychardia, Celiac disease, had to have endometrial biopsy? a to why, shortness of breath, Unilateral edema, yes, been told its impossible foot and handswole up like a balloon, pain and swelling in lymphs, tingling and numbness in limbs, extreme fatigue, doccumented heptomegly of liver and spleen, um...sweilling of the face and neck, frequent puss like lesions in my throat( cultured not strep, bacterial and viral negative) dizzyness, falling out, damage to heart valves, many negative tests but no answers. I can NOT gain weight, night sweats, intermitten fevers, weight loss of over 30 lbs, with no sucess of weight gain regardless of nutition good and bad. Black eye ( on the side of my face that has issues) cronic sinuisitis, cysts on breast, ovaries( friend) kidney myself, abnormal high and low blood pressure., memory loss, loss peferal vision, demylenizaion of optic nerve, hemifascial spasms, memrory loss, loss of congative abaility, suspected stroke, small superficial blood clot, B-12 deficency, HPV ( stage 1 ) colpo, cleared ?, Bone biopsy of one extracted tooth site reflected empty osseous lucuane, surrounded by granulation tissue, Pereferal blood smear results: anemia orgion uncertain, favors decreased bone marrow production...dru/toxin exposure/infection/neoplasia, nutritional deficiecny( i have great nutrtiton and take suppliments) chronic disease...wbc unremarkable, rbc has minimal anisopokiliocytosis w/ occasional elliptocytes, teardrop and polychromatic cells. Positive Mirobiology in mouth!! Also, in other pts in area C. freundii clpx Gram Negativie Bacilli Strep Pneumo. Suggested by microbiologist Optical neuritis, suspected, optical neuropathy.....
Vision issues include but not litmited to : color desaturation, diplopia, loss of vision completely, loss of perefiral vision, light senstivity, loss of myelin around optic nerve, some white stuff on it at one point,
Pepto strep.....anerobic bacteria Actincomycosis Isrealei, Atypical T.B.
osteophytosis on nfectious disease dr report, COXSACKIE A7-IGG high A-9 high a 16 high A 24 high, M PNEUMONIAE IGG ABS HIGH
COXSACKIE A7 IGG HIGH
COX............. A9 IGG HIGH
COX..............A16 IGG HIGH
COX..............A 24 HIGH
IGM'S NORMAL
I understabnd this now

M Pneumoniae IGG ABS huge high
M Pneumoniae IgM ABs minimal high


Negatives:
HIV, Hep A B C, Major General Oncology, nothing on blood cultures, Nuclear medicine, Normal TSH, 1 positive homonogenous ANA, other negatives, Herpes STD neg. Some fungalcultures, Rheumatoid Negthen slight positive,Esr usually low/normal, CRP usuallly low one or two normal, RPR non reactive, COXSAKIE IGM Neg quite a few more.......NO DR CAN TELL ME WHATS UP?

I am young, sickly, and am desperate for help

May be more can not think well please anyone can you help?

So today @ my Neuro it was suggested that they have suspected NMO, and it seems to fit somewhat they have suspected MS, but said no thats not it...

[sickntired4years]

I agree, however, my care is not that great. I was told about this NMO (devics) that my nero drs have suspected that for some time. Apparently the little info I have about it is....something lke a sister to MS. Similar symptoms and issues. demylenization of my optic nerve and other nerves. optic neuritis and nerupoathy have been thrown around. I am losing feeling in my right arm and leg and now sometimes I cannot feel temps in that leg. I do not know much about it yet. However, it makes sense. I hope it is not NMO or Devics but it fits all my external symptoms. I am also having loss of reflexes in that leg and weakened strength.
From what I know Devics used to hit hard and cause almost instant parylisis, mine seems to be a relapsing and remitting type. I do still believe that somehere at some point there was or is infection that cld have triggered it. I do not know much about it. I am new to these forums. What is the best way to find out from people w/ Devics and NMO? Is it all about how you ask the ? and phrase it?
I do trust this neurologist who finally told me they have been thinking that it is NMO and I do not know where to go from there. My EEG test was not preformed properly and have started having back pains recently. Very bad and uncomfortable, I attended a MS conference when they began discussing MS diagnosis, which I met a pt who had suspected optic neurtitis and went 5 yrs thinking she was ok. She has no lesions on her brain or upper cervical MRI, it was not until they did a MRI of her entire spine that they found lesions, and was diagnosed. I have started to better my nurtition and just do not know where to go next with this.
My Dr. basically I'm am not able to say definetly wheteher it is or not due to incloclusive EEg tests and other things
....Thank You for your response no matter how short or long it helps! I do pray I get better care . I am fighting for the right to still be seen as a patient period along with many others.

[sllowe]

Sickntired,

I'm sorry to be short since you gave us so much information. However, if the doctors say no MS, then you have to trust there is good cause for that statement.  Much of what you gave us here would be all the more reason why it's something else.

Wishing you well with your journey and hope you have thorough doctors who work on getting you well again. You deserve good care and I hope you find it.