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I have no diagnosed. I have had 2 emg's, mri from brain to tail bone, x-rays, blood work, muscle biopsy and no diagnosed. I go to an als specialist and she says she doesnt think als. Just something in my body. OK.

I had C-DIFF and it was nasty. I was sooo sick with a newborn. I could not eat and I went to the bathroom 20x a day! I was on IV for a week each time. I was on really strong antiobiotics and some can have neuropothies.

You were tested for Epstien-barr? (EBV) I have that and mycoplasma something. and I tested + for HSV-1. So I have alot of viruses in my system.

MY twitching is worse at night or morning. I had terrrible joint pain in JAn. It was in my hands,feet, anke, knee, hands, wrists. and then the twitching and weakness.

I am going to PT, so will see if it gets me back on track.

Viruses can attack your cns. I researched the HSV-1 and it can live in the nerves. I tested 2 and half times the acceptable amount, who knows....
 
April- That is very interesting. How is your energy now...improving much? If an ALS specialist doesnt think you have it, that is probably good news, right? Although I can imagine that you are very frustrated with not being able to find out what is going on. What is C-Diff, I didnt follow you there? I was tested for EBV, came back neg. I had CVM antibodies, but most people do so that didnt mean much. What about Fybromyagia? Were you tested for that? My GP told me today that he might put me on medication for that but he didnt even do the 18 point test! I didnt know there was medicine for that? I think I am going to hold off on any mediaction until I see the nero on the 26th of this month.

CB in Ohio
 
I don't indend to hijack this thread, but I did want to ask a quick question or two of April. You may have answered this in a past thread (and probably mine :p), but for some reason your two infections jumped out at me reading through. There are some similarities in our symptoms, and the start of this long winding road for me was cellulitis and a blood infection about 18 + or - months ago. Quickly:

1. What types of infections where they? Did they ID the bacteria?

2. What anti-biotics did they give you?

My blood infection was gram positive staph. It was treated with IV Vancomycin and two courses of Levaquin. It was only much later that I found out Levaquin has a nasty rap its potential to damage the nervous system.

Thank you,

Robert
 
Hi CB, i have been on this forum and i have been seeing a neurologists for over a year.... I highly suggest you stop viewing this site until you have seen a neurologist or had an EMG.... Not because i dont have concern for you but as you can see many of us are in limbo or took years to be diagnosed and you are not even on the neurology track yet. This site may make you hurried and the doctors are in no hurry to diagnose ALS. Three years ago i went to the ER because of repeated chest pain and neck squeezing which i thought were from swollen lymph nodes and possible heart problem. Turns out doc says it is costochondritis, so for years as i would have chest pain and rib pain i thought nothing of it....... Fast forward now, i am just now having breathing difficulties. This is a drop in the bucket of what i have. I have left wrist drop/and ankle drop. Not bad enough that i cannot use them but bad enough to see, and have problems from. I STILL dont have a diagnosis, so please do not get too involved in this site until you are told that it could may well be ALS.... Best Wishes, Sammantha
 
viruses

Awileba, thought i would write and let you know that i have had reactivated Epstein Barr virus for a long time but the ALS doc says it would not cause muscle wasting or brisk reflexes with no NCV findings....... His superior who i am going to see is named Dr. Morganlander and i looked up his name and he published a paper on how the Epstein Barr Virus affects the peripheral nerves. He wrote it in the 90's, so i am going to ask his opinion on it. I dont have my appointment yet because of the holidays... Hope you are doing well, Sammantha
 
wow!

I had C-diff. It is a bacteria that over takes your colon. It was one of the worst they had seen. It turned into psuedo-membranous colitits! I never had a bad stomach. ANYWAY, they treated me with IV flagl (the worst for neuropthies) and heavy does of vancomycin. I was vanco for 4 months, 250mg 4x a day. I stopped flagl, on the c-diff web site alot of people complained about it and it causes alot of problems. THe last time I was in with the pnuemonia they gave me levaquin and I had stop taking it, it was so bad.

I also while in hospital tested + for many viruses and some that 'could' live in your nerves.

who knows, maybe it is the illness and antiobiotics? One could hope!
 
just a note Robert,

I was on both flagl and vanco at the same time! heavy duty!

c-diff is short for clostrdium difficile, I did not spell right.
it lives in your colon and most people catch in the hosp or from antiobiotic use. I think I cought mine in the hosp with my daughter.
 
Thank you April. When I read how many times in recent years the FDA mandatory drug info has been changed for Levaquin (and many times specifically regarding its ability to impact the nervous system), I got worried. My neuro said that an adverse reaction to antibiotics would have been significant and pronounced from the get go, would do its damage, and not be progressive. Still, I remain courious from the autoimmune perspective.

Robert
 
Wright- can you look this over?

Wright- you seem to have a lot of knowledge in regards to these nero disorders and illnesses. Can you please look over my profile and give me some feedback? Is my nero Dr. going about this correctly? Does my conditon look like ANYTHING that comes to mind? Do the VERY DRY eyes mean anything? I would be very grateful!

CB in Ohio
 
sometimes we have things and maybe they mean something and maybe they dont. I had a period of dry eyes in the spring when i was sick and took eye drops and all. It only lasted for 2 months and went away! so, sometimes things come and go, this has probable always happen to us but we never looked so closley at little things before.
 
April- You are very correct with that statement. I find myself looking in the mirror for any sign of anything wrong. The eye thing is something that is so bad that I know I have never experienced it before. I did see that MS has that as a symtom? Does ALS have that as a symptom?
 
no, I dont think that it is a sign of als. I think that it is more of a sign on auto immune. Have you seen a rhuemy?
 
no, I dont think that it is a sign of als. I think that it is more of a sign on auto immune. Have you seen a rhuemy?

I have dry eyes 8-9 months ago also If I close they start itching. I had an eye inflamation(I forgot what was the name) at Jan 08. I do not have ASL diagnosed yet but I have eye problems since of the begining of my hell . I have blurred vision , light sensitive... but who knows I may have both ALS and other disaster(autoimune)
 
I have not seen a rhuemy. Should I see 2 specialists at once (Nero and Rhuemy)?
 
Hi CB....I would just like to make a helpful comment about your dry eyes. I am not an eye rubber. When I had a recent appointment with my Ophthalmologist, he told me that the ducts around my eyes were clogged, and probably causing me to have dry eyes.

He said that I needed to massage 'gently' around my eyes daily to keep the ducts open. He also gave me drops.

Maybe this will help a little. :)
 
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