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leg numb bad er visit need to vent


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Old 03-24-2006, 09:59 AM   #1
agravy
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leg numb bad er visit need to vent

well yesterday it happened again. I was just walking along jolly as could be and the next thing I know i'm on the floor w/left leg numb can't move it at all. My Chiro works across the road from where I work so my boss loaded me up and the chiro came out to the van to check me out. He said I had no reflexes and stuck me up and down my leg a few times and said I needed to go to the er. At the er they did a head ct and said it looked fine and sent me home to follow up with my neuro within a week and a px for neurotin. Well I've left numerous messages with them and no return calls. We all no howw hard it is to get through to the neuro and how frustrating it can get. I jsut don't know what to do anymore. I feel like I am so alone in all of this. This is not all in my head, I don't care what all the reports say. I know my body and something is not right! Any advise on how to get some results or treatment I could really use some help.
Alicia

 
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Old 03-24-2006, 01:44 PM   #2
agravy
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Re: leg numb bad er visit need to vent

Just got a call back from neuro. I faxed them aletter of problems instead of leaving another message. ya'll should try that. I got much quicker results! I'm scheduled for a MRI T3 Mon. And They increased my does of neurontin. At least now I feel like some one is at least listening to me. I may not feel better physically, but emotionally WOW!!
Alicia

 
Old 03-28-2006, 06:50 AM   #3
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Re: leg numb bad er visit need to vent

Well, went for the MRI last night. Everything went fine. They just did one of the brain with & w/out contrast on the T3 machine. I hate to say this but I really hope they find something. At least then they will know this is not all in my head(lol) and will start taking me seriously. I keep thinking How many years am I going to have to suffer like this and put my family through this before the doctors can find what it is they need to find to dx and treat me? I Have made major boo boos at work with financial #'S AND MY BOSS HAS been verry understanding for his wife has ms. He & his wife were the fisrt ones to mention to me that I should considre being tested for it because I showed all the signs. His wife said it took 7 years to get a dx for her and at one point they even wanted to have her commited thinking she was crazy because they couldn't find anything wrong with any of her tests. then one day bam lessions on the brain.
alicioa

 
Old 03-28-2006, 07:37 AM   #4
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Re: leg numb bad er visit need to vent

I know exactly how you feel with wanting a dx. If you don't have MS, what the heck do you have? I am in the same boat, except I have 2 lesions, which is not enough to meet the McDonald Criteria.

What other tests have you had done?

I have only had a brain MRI. I have not had a spine MRI, LP, evoked potentials, or any of the other neurological tests everybody else is talking about.

Good news..... I called the National MS Society to ask for a referral to a local MS specialist and I have been accepted as a patient by Dr. Jody Corey-Bloom at UCSD. My 1st appointment will be on May 1st and I am hoping she will give me at the very least, one other test that might help prove that I have MS.

My mother is bugging the heck out of me in trying to get answers. She just doesn't understand that I am luckier than others on this board in that I do have "something" visible on a diagnostic test to validate all of my symptoms. My GP believes I have MS, but I wil never get a neurologist to dx without more substantial proof. Why do neurologist feel it is OK to send you home and say "I don't think you have MS, but Gee, we just don't know what you problem is".

At least if you went to your doctor with a really bad cold symptoms, fever, etc, they at least say "It's a Virus". They do not send you home and say "We don't know what you have".

I know this sounds terrible (at least to many others), but I just wanted to say that even if lesions do appear, you better hope there are at least 3, or you will still be in the same situation that you are in now.

In January, I started to have my symptoms ease up a bit and thought that I would start to focus on getting back to the "old me", but that just hasn't happened. Every day, I have persistent problems. Not to the same degree or level that I had when I had my attack, but enough that I realize there really is something wrong with me, and the answer of demeylinating disease of unknown origin just does not apply. I know and my GP knows, it is MS.

I go to bed scared every night that this will be the night that I have another attack. Sometimes I am scared (because I have upcoming plans and don't want them ruined with a relapse) and other times, I wish I would have an attack so that I can get on medication, learn to accept this disease, and get on with my life.

Best to you in you path through Limboland. I completely understand.

Les


 
Old 03-28-2006, 12:14 PM   #5
agravy
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Re: leg numb bad er visit need to vent

The answer to your ? of what test they have ran is what test haven't they ran. The only thing that my GP found odd, but my neuro doesn't seem concerned about was that my basic mylen protein count was elevated and I had scattered lymphocytes in my csf. My neuro said that the MRI done 7mts. ago were done on a t2 machine and the one done last night was done on a t3 machine right after an attack and that if there is anything ther such as a lession that it should show up this time.

 
Old 03-30-2006, 04:12 AM   #6
duttin
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Re: leg numb bad er visit need to vent

Agravy,

I pray you get some answers soon.I also have high elevated myelin basic protein in the spinal fluid.20 years ago they used this as a marker for MS.I had a long visit with GP yesterday and he was mad at the neuro.

The neuro has canceled my last appointments,I have one on Monday.I also have one legion of the brain.No reflex in right ankle and now very minimal in right elbow.I'm right handed and each attack has taken something away from the right side.I've had MRI's and LP.I've seen several specialist and many diseases ruled out.I ask my GP if the Myelin Basic Protein elevation is what is causing all the sensory problems,he said yes,but the neuro community don't use it ,he stated it was non-specific.The heck it is!My symptoms of numbness are quite real and very specific,especially when the reflexes are gone,they don't come back.

Some day I'm gonna write a book on the stupidity of what Drs say to patients.If they only knew how some of their words hurt patients and their disconnerning attitudes.I had a Neuro tell me it was all in my head,I replied apparently,there's a lesion there effecting my vision,its in the central nervous system,elevated MBP,causing the multiple sensory problems,its also in my ankle there's no reflexes(which I have lost in the last year)and now wear a leg brace to keep the right leg in position.Go figure.He told me I suffered from depression,stress and anxiety.Not depressed,I have a great attitude and have kept my sense of humor thru all this,not stressed and I'm on to many muscle relaxers to control the spasticity,I couldn't get excited if I wanted to.But I did tell him I was going to need anger management ,because he was slowly peeing me off.

My last attack was 12 days ago after a long hot bath,getting out of the tub I passed out,hubby was going to call the EMS,oh no he wasn't,with my nakedness hanging out,don't think so.I'm finally getting back to normal all except the slow reflex in right arm.GP was not a happy camper,since no one called him,but after seeing several DRs in the last year,ya just get tired of hearing the same old crap.He does want to do a new series of MRI's this week,but have to go thru neuro do to insurance.

I have also been left with a bladder problem,very little fore warning that I gotta go,I have banned my children from the down stairs bathroom,its definatly not a pretty site rushing for the bathroom.Right leg goes this way left leg goes another way.Needless to say there are no longer obsticles in the path of the bath room.My 14 year old son just shakes his head.Not to long a go I wet my pants on my way home from the store.Thank God my kids were not with me (teenagers) they'd tease forever.I called my mom and was telling her,she said not to be upset,I wasn't upset that I'd wet my pants I was upset I have cloth interior and its my new truck.

Lestoby my mother is concerned like yours,she always ask why can't they give you a definate answer.My GP knows I have MS,but we are all stuck with that McDonald score.I bet if he feels like us he'd change his dang gone score.I use to go to bed scared,not anymore.Its usually when I wake up,its what body part ain't gonna move today.Somedays they all say not me ,not me.

I take each day as they come,what is,is.No matter what ever comes out of this,I know how I feel.I have to go by what my body tells me.I'll keep using the maintenance drugs to control the symptoms,but oh boy if these new MRI's reveal a more defined diagnosis.I know a few specialist that gonna hear from me.

In all honesty how many of us want to feel this way,if we were not feeling these symptoms,why would we keep seeking medical advice and furthering the testing.These DRs and test are expensive and insurance only pays so much.I honestly think that the neuro community needs to listen a little more and actually listen to there patients.I know there hands are tied on the criteria's,but be honest and continue the care and stop dismissing us undiagnosed patients as if we are wacky.Explain this disease and let patients know it's a wait and see process,instead of scaring the crap out of people.No one wants MS ,but not knowing what is causing there symptoms is worse than MS itself.

Sorry to vent,I just needed to say all this.

prayers to all
toni

 
Old 03-30-2006, 06:40 AM   #7
agravy
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Re: leg numb bad er visit need to vent

When I filled my taxes this year I had $19,000 worth of medical expenses. Granted this included my insurance premiums, but still with all the tests and co-pays and medicines, etc. this is rediculous and I still don't even have a dx. Do these dr. think I enjoy throwing that money away when I could be spending it on my kids. It's not all in our heads. I'm like you, when they finally do find out what is wrong there are a few neuros that I will be faxing the report to especially the one who said that muscle spasms were not a sx of ms and that an elevated mylen basic protein level was nothing to be concerned about in relation to ms. I think he just ws wanting to dismiss ms totally and simply relate every thing to me having migraines. I'm sorry, but migraines alone can't possibly cause a person to loose feeling in their limbs for days and have now reflexes what so ever. I wonder sometimes what these dr's are thinking or if they even are.
All I can do is hope and pray that this last MRI will be able to tell the story of what is going on with this body of mine so someone will recognize and belive what i am telling them so they can start to treat me and maybe just maybe I can get back to being the mother & wife I used to be. I'm so tired of being tired all the time. Does anyone else ever feel that way. I have to go to work so I can keep insurance, but by the time I get home all i want to do is put on my pj's and lay on the couch. All I can do is pray that thay wil find the answers soon.
Alicia

 
Old 03-30-2006, 08:19 AM   #8
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Re: leg numb bad er visit need to vent

Finally, I visit the message board everyday and this morning I could'nt believe my eyes . It's just like I wrote your story myself. I know just how you feel. I thank we could be MS twins . My neo found two lesions on the right side of my brain about two years ago and I go see him every three months and get a MRI every six months and the finally answer after every visit is always the same, You could have MS . I've finally decided to go see another doctor. My appointment is April 28th. I like you, stay very sleepy all the time , a matter of fact this weekend on the way home from sisters house ( about a twenty minute drive) feel asleep in the car and when we got home my husband said "We're home " and I said " I'm just going to stay in the car and finish my nap ,about one hour later he came back out and got me up. I'm sure I'm the talk of the block. Good Luck to you and thank you so much for writting your story I couldn't have written it better myself. It's great to finally know that others feel the way I do. Your my

 
Old 03-30-2006, 08:58 AM   #9
duttin
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Re: leg numb bad er visit need to vent

Agravy,

I contacted the MS institute at the Cleveland Clinic,they are going to set me up an appointment soon.I have seen 2 specialist there already.A neurosurgeon,when my symptoms first started.Then in the last 6 weeks I seen a neuromuscular specialist to rule out ALS,myopathy and neuropathy.You'd think they would of transferred me to the MS clinic sinse my medical chart says probable MS.I don't like having to think for my Docs.But this place is awesome.I hope I can get some answers.I hate hanging out in limbo.I also want to get back to being a mom of 4 and a wife instead of being strung out on muscle relaxers and laying on the couch because body parts don't want to move.Hope you get your results soon
Prayers to you
Toni

 
Old 04-03-2006, 06:00 AM   #10
agravy
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Re: leg numb bad er visit need to vent

Well,
I went to an opthamologist on Fri and guess what. I was dx with ON. Imagine that. They did a field of vision test on me and said ii had a major blind spot in my right eye. duh! I've been saying that for 3 weeks now. I asked him if this could be migraine related and he said absolutely not and asked if i had been tested for ms. I just busted out laughing, i couldn't help it. I explained all i have been going through and he said he was going to write my neuro a letter strongly suggesting him to consider looking further into ms since ON is a precursser to MS and would fax it to his office before my appt. on fri. I'm just releived that someone is finally listening to me. When i told the eye dr that I was glad I wasn't just seeing things he said, but Alicia you are seeing things, Black spots Thank goodness for those that still can add humor to our frustration. I just hope this puts me closer to a dx so i can get the treatment i need to start feeling better and if I do have MS I can get a hold on it before it does to much damage that can't be reversed.
Let's just hope & pray this opens my neuro's eyes a little bit and he quits chaulking all my sx up to migraines. My lord, I can have the flu and cut my arm off, but just because I have the flu doesn't mean that I didn't cut my arm off know what i mean.
Alicia

 
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