Skip to content
Lost with no hope left.
Anon_157363 posted:
I have been sitting here listening and reading alot of the posts in this site ...even sent a few my self. and everyone tells me the same thing. Go and see a M.S. specialist. That's just so easy for them to say. I won't go into all the details because I'm trying to keep this down to four thousand Characters. I just don't know if I can handle this any longer.The many Doctors, the many Misdiagnosises, and the first thing they all want to do is give you anti-depressants or happy pills I like to call them. I tell them, I just want to get better.I'm not depressed, I'm Confused, frustrated and angry that I can't function the way I used to.
I have very little balance and coordination left, I feel off balance and almost dizzy 24/7. Oh, I got to be careful when I say, Dizzy, that because they think I have Vertigo, or even Manieers when I say that word. I have been through those test's and I don't . I have been M.R.I'd Cat Scaned ,Corroted Artery Scaned and a host of blood tests that have been checked for I'll bet everything under the sun. I have had E.N.G. test's done and they did tell me that I went from a 50% loss of inner ear function two years ago , to a 61% loss of inner ear function at the beginning of this year and now to a 98% loss of inner ear function.
If I'm not mistaken, from what the E.N.T. doctor told me that this is a neurological problem and that it is progressivly getting worse not better.So a vestibular problem has been ruled out. And that I will not get the function back, It has alot to do with helping the body control balance and cooridination. and when I asked them if this continues to get worse and it goes all the way to 100% loss, What can be the out come for me.He didn't tell me, but I have a good Idea what it will be. all he said was to go see a M.S. specialist. I told him of our financial delemma and he suggested the Mayo Clinic.
I opted to stick it out with my Neurology Doctor instead. After a fist more of pills and more misdiagnosis, she finnaly said to me one day, What do you want us to do,it's not Neurological,it's not Vestibular, and it's not Pshycological.We have done all we can do.You just seem to be going down hill more and more each time I see you. So I asked her Why she hasn't done any Neurological testing, such as a contrasted M.R.I. or a lumbar puncture or an Evoked Potential test.She said thats because it's not a Neurological issue.I then asked her for a referral or to have a second opinion.
I don't think that went over to well, so I went back to the E.N.T. Doctor and he went ahead and ordered a contrasted M.R.I to be done.I went for the M.R.I and got a blood clot from the proceedure and havent heard anything about the results from the M.R.I. I think they are more worried about the blood clott now more than the M.R.I. That was about two months ago.During that time I was informed that I was Discharged from the Neurology Department and it has been determined that I do not have a neurological issue. and a refferal will not be given. I guess she didn't like me asking for a second opinion. I have so many other symptoms it's not funny and some very painful and others just annoying, the vommiting really sucks and memory and concentration and problem solving are really getting out of hand.The pins and needels and burnning sensations are really wild jsut how can a person have all of these sensations happen at the same time. But the worst thing is the sharp stabbing pains I get and at the worst time time in the middle of the night , during my most cherrished time when I get some relief from it all<Sleep>To be woken from a dead sleep in so much pain and to not be able to move until it subsides is a real bummer. try to go back to sleep after that. So now I'm on the hunt for a Good M.S. Doctor. and just maybe He or She will give me some kind of hope and some real answers to what the heck is going on with me.
mmthlvr responded:
Don't give up, you will find the right Dr. It took me 5 different dr's before I got my dx. Believe it or not my family Dr knew it was MS before any of the specialist did. I had all the tests & don't let them tell you a negative spinal tap means you don't have MS because that's not true.

If you live in Ca I have a wonderfull Dr I can recommend. I really wish you the best & hang in there.
roberlyn responded:
time for a new set of doctors, but make sure you call and get the results of the MRI with contrast. that will really help to diagnose MS if there's anything abnormal with the brain. i'm guessing since they discharged you the MRI came out normal, but they're clearly poor doctors if they didn't even give you the results.

good luck! don't give up -- search search search for a GOOD doctor who wants to help, even if it's just a general practitioner who gets the ball rolling.

jessilee_twin2 responded:
WOW !! that about left me breatless..!!! i''m jessilee...yu don't have to answer, but, were do you live?.. YES, you need new docs..and NO, don't ever let the "idiot" ones win. it was my primary who didnt give up and got me to the right neuro/MS Specilist.. read my posts on here... i've been through the ringer also , and the WAITiNG is enough to make you crazy !! please be strong and, believe it or not, there IS a Doc that actually KNOWs what your talking about, and knows what He's doing as far as MS !!
luv 2 all ... jessilee
hackwriter responded:
I agree with all the advice given. We've all had the idiot docs who told us it was all in our heads, or stress caused it, etc. The point everyone is making is don't give up and keep searching. If we can do it, you can do it.

jessilee_twin2 replied to hackwriter's response:
hackwriter, i just posted another reply to anon but it said "server busy, check back later' i have to retype all that or wll it post that original when not busy ?????????
luv 2 all ... jessilee
hackwriter replied to jessilee_twin2's response:
It does that to me a lot, but I just wait for a minute and it usually appears.

Except for when it doesn't :-)

To avoid losing it, I copy what I've written before hitting "Submit."
jessilee_twin2 replied to hackwriter's response: didn't reappear !! that was a good one too.. well, i'll try to remember it...THANKS !!!!!!!!!!!!!!!!!!!!!!!!!!!!
luv 2 all ... jessilee

Featuring Experts

Stephanie knows multiple sclerosis as a patient and as a nurse. Stephanie was diagnosed with multiple sclerosis in 2013. Shortly after being diagnosed...More

Helpful Tips

Tip for hives
My daughter suffers with hives, they have never found out what causes her hives either. We thought since I was recently diagnosed that ... More
Was this Helpful?
2 of 2 found this helpful

Related Drug Reviews

  • Drug Name User Reviews

Report Problems With Your Medications to the FDA

FDAYou are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.