I think my friend might have Myalgic Encephalomyelitis (cfs).
She is convinced it is MND.
This is part of her story.
To be honest I've been ill on & off for years more on than off especially near the end. I'd get so exhausted I'd collapse at work & end up in hospital for weeks at a time. Then in October/November 2007 I got flu really bad & I couldn't get rid of it then 2 weeks before Christmas I started to lose my hair by Christmas I had not one hair on my head & my hair is thicker most (really thick like my head lol).
She is now bed bound, has to use a feeding tube, is incontinent, bladder and bowel, spasms in throat so cant eat, and literally cant stand up or use her legs although she has severe nerve pain and her legs feel hot and cold.
She has been tested for Lupus and MS and both negative. She will be going back to the hospital for more tests.
I have only just started talking to her, and this screams at me M.E or even Conversion Disorder. She is 40.
I would think with her severe symptoms they could have diagnosed her with something.
She seems classic to me of someone who has M.E. to the extreme. The thing is she hasnt walked for so long she cant use her legs and they stopped physio on her.
Now she has convinced herself she has MND.
Some how with her symptoms i would have thought they would have checked for that.
What makes me sit up is the fact it all started after she had severe flu.
Pshh.. I wish I cld answer that, I was feeling sorry for myself heres my story maybe some of the labs I have had may help also, has she been checked for LYME? Their page is great!
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
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
M Pneumoniae IGG ABS huge high
M Pneumoniae IgM ABs minimal high
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?
I see my neurologist tom, and do not even know what to ask for anymore. Nutrition and suppliments have helped in addition to an Ion foot detox machine, also complementary medicne may help her feel a little better if shes not in the hospital. I am brand new on this forum, but it seems to have a lot of informed patients and the best thing to do is not loose hope and support your friend I wish i cld suggest more. Perhaps its something like I have a bunch of wierd viruses. Has she had dental work? What meds was she treated with? Maybe something did not agree with her system? Or maybe she caught something else in the hospital. I wish I could say more to help you and your friend.
That poor young woman! I have had ME since the beginning of time (feels like anyway) and I started it after a bad flu virus. In bed 24/7 for 12 years, could hardly do anything for myself. Thank G-d can now get around a bit but still have days when bed is the only place.
In the UK we have neurologists who specialise in ME. I thank G-d that I had a brilliant one. I think he works in the US too, so there must be others. Strange as it may seem, some neuros don't believe in ME, or at least dispel it as a diagnosis cos it doesn't have tests to fit a certain category.
People go through agonies before they find a doc who will make a clinical diagnosis even though all the tests have come back fine.
I cannot say anything for sure re. your friend but I do know that there are people in Prof Findlay's M.E unit who are in a bad way, being tube-fed etc.All you can do is to try to persuade your friend to find an ME friendly neuro. Tell her it's just one visit. Also , feeling so bad she has to be willing to try anything to find a diagnosis.
You're right, she does need help but what can you do? Just above and maybe speak to her doc re. the condition she thinks she has. Sorry, we're told nothing in the UK, not even our blood group, so I don't know what she thinks she has. Even if it is that, sounds like a nerve disorder, she has to be tested to eradicate or confirm. Sorry, not much help but we're all with you. Good luck.
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