OH MY GOD!!!!

[airyona]

So 4weeks ago I seen a neurologist about a lesion in my pons. Am having left sided numbness, pins and needles in my feet, muscles in legs hurt so bad by evening I can barely walk, urinating frequently, constipated, vertigo, just to name a few of my systems. To top it off I have this strange pain in the front of the right side of my neck, hurts worse when I cough, sneeze, talk, swallow or look left. I get a string of pain going down into my left clavicle.


Lesion is 3mm, neuro said its kind of small and isnt sure ms or not? MRA, MRI of thoracic(he wouldn't order cervical mri, said there was no need to)sed rate, ana, ssb,anticoagliation, and few others I cant remember. Also wanted me to see rheumatologist.


The rhematologist did what I feel was a very through exam and stated he felt there was nothing rheumatological going on here and that if any of the test came back pos., he would call to see me again.

Had these test done 3weeks ago, left message Friday and Tuesday this week. finaly got a call today from his secretary stating all the test were neg. and that he could not find anything neuralogical wrong with me.

Oh, yesterday was feeling frustrated with no call back from neuro and scheduled appointment with different neur.

To top it all off the weekend this all started when on 3 week leave from work because of vertigo and vomiting and nausea. Been back for 3 weeks, working 8hrs instead of 12. Legs hurt horribly bad by the time I leave. pins and needles in my feet where I can no longer stand still. Still want to keep working, its the only part of my life as I once knew it that I have left.

Found out that my Sup. had called the hospital where I was seen and they wouldn't give him any information so he thinks I am making it all up. Hes is telling everyone this. My paper work was given directly to hr so he didn't get to see it. Haven't told anyone what I am going through just tell them I dont want to talk about it.

I am not the type of person to go around moaning and groaning and complaining. I do what I have to do and I make it. I have literly had people look at me and say "you look fine, aren't you fine? why cant you work 12hrs. I have two more weeks to work 8hrs and with out a diagnosis they are going to fire me.


Up until 6 weeks ago when this started I had pretty much let drs convince me that I am crazy and that they are all right, these things(been dealing with extreme fatigue, dizziness and nausea, and the pain in my legs for over 2yrs)are all in my head

[deborah0904]

Am I understanding that the hospital did release your personal health information?  This is against the law!  The individual who released this should be reported.  

I'm sorry you are going through so much.  

[lbradley35]

Send me a private email and I want to give you my 800#. I work with people with disabilities and know some of the laws. Since you are in MO and I'm in AR I can give you direct phone numbers of who you should be talking to and what you need to do to protect yourself.

Lori

[airyona]

I have called the EEOC and the dept of labor, trying to find out if there was something that can protect my job during diagnosis, trying to find out exactly what my Drs. note needs to say. They just said theres nothing more that I can do, other than requesting a accomidation, which I've done.

If you know of something more that I could do I would love to know about it. I'm not sure how to get you my e-mail address or even my number.


I live in MO, near St. Louis, there is a Dr that has just opened a MS clinic in August. I have a appointment with him Nov 25. I have read his informational sheet, he has state awards as well as national awards for his work with ms and research. I have high hopes that he is going to be able to help me. He is a strong advocate for early treatment.


I have plans on addressing the issue with my supervisor when I can do it with my Manager present. She is ahead of 3different departments for 3 diffeerent hospitals.I will write a note and bring it with me, I'm just not sure exactly how to go about it. My supervisor is acting like a child that has a icescream under his nose and I won't let him have.(i have not shared information with him), actually my kids don't even act like hes acting.

[lbradley35]

Airyona,

I don't know if you are aware that people with MS (myself included do often have Thyroid problems). That could possibly be a problem with your throat. Every state has an organization call Disability Rights - these are lawyers and disability advocate that will help you, even fight disability cases for you.I 'm going to give you the link to the national organization. This link will take you into the national directory so you will be able to find out the information for your state. I would suggest calling them if you think your doctor has denied you proper care, and it sounds like he has!

http://www.ndrn.org/aboutus/pwd.htm  

(Disability Right National Directory)

My friend runs the local Disability Rights organization in my state, so I do know what they can do to help you.

I suggest you listen to the other members concerning documentation, or even tape recording your visits with the doctor. The more documentation you have the strong the case is for the Disability Rights lawyers.

If you would like to talk more about it....just send me a note and I would glad to talk with you about it or I can email you my 800#. I work in the disability field and work with Disability Rights on a regular basis. I hope this helps.

[Quixotic1]

Okay, since you have another month I would like to see you write a letter to HR mentioning the threat to you job and the rumor that you are faking.  This will at least be notice to them that someone in the company is stepping out of bounds.  It's called documentation that needs to be there AHEAD of any action on their part.  If you wait until they fire you, any letter will seem just a manipulation to save the job - essentially "sour grapes."

The letter doesn't have to be strong or challenging, just documenting the way you are being treated.

Even go to the HR people and try to work out with them some way to make it another month - without telling them that is what you are doing.  

Magoo has helped us in the past with questions like this.  And Momzilla has quite a bit of HR knowledge.

How quickly can you see another neurologist?  It seems clear to me -and I supect to the rheumatologist - that you have spinal cord disease.

Quix

[Lulu54]

Well here's hoping you can hang in there until Dec. 12 to get your full year in.  This treatment is ethically wrong if not legally wrong.  The law I believe is on your side.

Is anyone out there with experience in law that can help with this one?  
Try to pace yourself,
Lulu

[airyona]

Well unfortunately my 12months is Dec. 12, I've worked enough hours but not long enough. I have called the EEOC and the Dept of labor, basicaly they have stated that until I am fired there is not much I can do unless I file a complaint right now. I'm trying to give them the chance to do the right thing. Of course my issues come right after a girl I work with worked 8hr shifts for 4months before she went on maternity leave. I've spoken with her and all she had to do was bring a note from her dr. No FMLA or nothing else was required.

My neuro exam was a joke, he did tap on my knees, not sure but since I kicked him in the shins I'd say it was a litle bit hyper. I had no ankle reflex, and no babinskis(sorry I know thats spelled wrong). my foot did absoultly nothing with both of those. He did nothing to my arms or hand except stick a safety pin in several different spots on my hands. I knew he was sticking me but it did not hurt at all. Exam too about 10mins, part of that was having me walk down the hall.

The rheumatologist commented on how tight the muscles in my legs were and that there is some kind of test to measure spascity?


I said this on the first post several weeks ago but again this site has helped me so much, even though I haven't written in much I get on here almost every day, its such a help to know that I'm not alone. Like so many have already said, I've seen and read many other sites but there is not another like this one

[sllowe]

Yea! To Quix's response.  I can't add much more to that because she said a mouthful.

What a crock!

You do need some help with this. It is illegal, and in some states the laws are really strong where this is concerned.

My gosh! I'm sorry you are going through this on top of everything else.
ttys,
Shell

[Quixotic1]

OMG! is right!  First I have to comment on the fact that your supervisor attemtped to invade your privacy by requesting medical information about you without your permission.  Others will know for sure, but I think this is forbidden behavior.  It is very close to harrassment and a complaint to HR is definitely in order.   If your supervisor needs to know if you have a legitimate doctor's excuse, then he can talk to them.  To spread rumors that you are malingering is outrageous and constitutes both slander and creating a hostile workplace.

Since you already have the "heads up" about potentially losing your job if there is no diagnosis,then you need to take strong steps to preserve your employment.  I hope others with specific knowledge also jump in here, because you do have rights (if you are in the United States) and there are ways to keep employers at bay, but you may need to take the first steps.

One thing you can do is consult a disability rights attorney.  Many have a free or reasonable first consultation fee.  Another thing is to take FMLA - leave under the Family and Medical Leave Act.  This leave is without pay, but preserves your employment for up to 12 weeks.  Also you do not have to take all of the leave at once.  Many people use it for shortened hours (due to fatigue), and time off for doctors and tests.  The employer is held from firing you while you are on it and there are strong anti-retaliation provisions for "punishing you for being on it."    To put the company on notification that you are taking FMLA, you can go to the official government website and download the form.

http://www.dol.gov/esa/whd/fmla/

You can write a letter to HR stating your intention to exercise your rights under the FMLA and then deliver the form to your doctor to be filled out.  For instance, you can (if approved by the doc) take 2 hours off each day, until the hours add up to the max of 12 weeks allowed each year.  To qualify for FMLA you must have worked for the employer for at least 12 months and have worked at least 1,250 hours during those twelve months.  The employer must have 50 or more employees (full and parttime).  But go to that site for the exact rules.

The only reason that I can see for not ordering a cervical cord MRI is that some of the cord is seen on the images they took of the pons area and that he ordered the thoracic MRI to include the lower cervical cord.  Since many of your symptoms strongly suggest spincal cord disease - such as numbness on one whole side and difficulties urinating.  Besides, having found a lesion in the brainstem (pons) a conscientious neuro would want to know where else lesions might be found!!

If you have tendon reflexes (where they tap on your elbows, knees, and ankles with the little hammer) that are too brisk - called hyperactive reflexes - then that also points to lesions in the spinal cord.  If the neurologist doesn't seem to be very interested, he likely isn't.  You are right to look to see a different one.

We all understand how awful it is to feel so bad and be so fatigued, but have people tell you you look "just fine."  It's frustrating and demeaning to have people judge you on the basis of being able to walk upright.

Well, you may need to take some steps quickly to preserve your employment.  Let us know how large your company is and how long you've worked there.  You can "invoke" the FMLA even before you need the leave, just to put your employer "on notice."

I hope this has helped.  Also let us know if there were any parts to your neuro exam whcih were abnormal.  The first consultation neuro exam should be VERY thorough.  It takes upwards of 30 to 45 minutes and covers you head to toe.  If the first neuro didn't do such an exam, then he didn't look very hard for a "neurological" problem.

Good to see you back with us.

Quix