Terminated from job

[newweg]

Hello, I am new here. I was recently terminated. I have a pons lesion and smaller lesions in deep white matter AND I worked for the radiologist who read my MRI's. One thinks I have MSA (which I do not). Last week I had a CT chest for dx Wegeners and MRI follow up for pons lesions. Report for MRI brain states history of Wegeners. Still don't know if I have Wegeners yet but docs are looking into it. Also filed HIPAA complaint one month ago when I caught 2 co workers going thru my paperwork...Thought? Yes, I am getting a lawyer, not as easy as it sounds. Anyone else experience this?:ohmy:

[mishb]

Hi newweg and welcome to this site but sorry that you have the need to come here.

I am also so sorry that you have had to put up with some absolutely lousy co-workers, what a disgrace. I'm very happy to say that my working environment and co-workers are amazing.

You can be assured of receiving the best advice in the world in regards to all things Wegs on this site.

[annekat]

Welcome to the forum. I'm sorry I don't understand the technicalities of your medical history, but if you might have Wegs, you have come to the right place. There are members here with extensive knowledge about all things related to WG and other medical and health issues. I will say that I don't know how most people with Wegs could get along without this forum.

Anne

[newweg]

Thank you!

[Dryhill]

Newweg, welcome to the forum and to such an exciting "never know what is going to happen next" disease. I am shocked that your co-workers could do such a thing and that your file is clearly available to your collegues. If you ever have any qestions and concerns do not hesitate to shout out, someone on this site will most likely be able to help you.

Jim

[newweg]

Last week I had all blood vessels break in one eye, came on quik. Just healed...An hour ago..BOOM whites r blood red:crying::ohmy:

[drz]

Last week I had all blood vessels break in one eye, came on quik. Just healed...An hour ago..BOOM whites r blood red:crying::ohmy:

See AN EYE DOCTOR QUICK TO BE SURE THERE IS NOT DAMAGE INSIDE that you can't see or feel yet!

[Al]

Obviously, we can't speak to the legal implications of your case, but it sounds really weird to have coworkers looking at your medical data. No way should that ever happen.

About the medical implications, I hope you have a very good neurologist who knows WG (many do not). WG is always a very serious matter, but in the central nervous system it is extraordinarily critical to have the services of the best you can find. Are you located close to a vasculitis center?

Al

[henrycandy]

:confused1:Hi All

New Member - WG for last 5 years -luckily appear to have been diagnosed early hence (touch wood) no major organ involvement.

However due to Gastro problem (advised not likely WG associated) over last 12 months WG is gaining momentum and subject to updated Blood Tests I look likely that kidney biopsy required and 12 months of Cyclo/Preds which i am not looking forward to.

Off work over 6 months and likely may not return - Has anyone had experience of claims under Income Protection for WG - I have had periods of remission under WG (pred/mx dosages).

Not sure how Insurance companies view WG particurarly as under correct dosage of medication one can sometimes bouts of normality as regards day to day living

Hope furum members can help

[newweg]

Thank you all. I actually saw eye doctor last Thursday, he works with Wegeners. He said all good! No idea why my eyes keep doing this. I also have a neurologist at Jefferson. He does not treat Wegs. He told me to find Rhuemologist, which I did, testing still going on. All blood work ok so far, but he just ordered new blood work. I am in New Jersey and my docs are in Philadelphia, if anyone has a good doc to recommend, let me know.
About work....I had surgery last April, totally unrelated to any of this. Because of the nature of where I work and the tremendous gossip. I did not tell what I was having done. Well, someone decided a boob job!!! That was the story. Oh yeah, I worked in medical field with all medical "professionals", sad? yes.

[annekat]

Wow. Is the "boob job" the reason they were rifling through your records? They should be the ones terminated, not you. How incredibly unprofessional and unethical as well as sad. Good luck with any legal proceedings.

I'm glad your eyes seem to have no major problems..... mine were red a lot for awhile, too, mainly in the morning when I woke up, and it would clear up with Bausch and Lomb "Opcon-A" eye drops available OTC. The problem gradually went away as my treatment progressed.

Anne

[newweg]

Nothing prescribed helps eyes much. They say allergy! 2nd broken blood vessel in eye in a week. Is this common? Lids get swolled and red, evenn make up can not hide

[annekat]

Nothing prescribed helps eyes much. They say allergy! 2nd broken blood vessel in eye in a week. Is this common? Lids get swolled and red, evenn make up can not hide I don't know how common it is, but my whole eye areas were irritated and swollen, including redness and swelling in the lids, around the time of my Wegs DX. Allergies could have been involved, as it was that time of year, and I do have a history of them. But with the high dose of Pred they put me on, allergy symptoms should have been controlled, so I think it was mostly the Wegs. The B&L drops I mentioned are supposed to be for allergies, and they did help the redness, at least temporarily. I should have seen an eye doctor, but didn't. The problems around the whole eye area took at least a couple of months to resolve with Cytoxan and prednisone. I don't think mine were as extreme as some I've seen on the forum.

Anne

[Al]

Though the red eyes can happen for many different reasons, for Weggies it really is most often a sign of disease activity (a flare, that is).

Al

[newweg]

my blood work is all normal so far...Anyone have that?
Alos tingles/numbness in hand, feet and across nose

[Al]

my blood work is all normal so far...Anyone have that?
Alos tingles/numbness in hand, feet and across nose
The neuropathy is another common indicator of disease. Does your blood work include an ANCA test?

Al

[newweg]

yes normal

[newweg]

I get foggy too when I turn my head quickly. My eye lids are always swollen also. Doc worked off symptoms more than anything.

[Al]

There are some forms of vasculits that are ANCA negative, but this does not mean that there are no symptoms. The conjunctivitis and the neuropathy are a concern, but any neural aspects are due even more respect....

Al

[annekat]

It's not uncommon to have a low or negative ANCA test result and still have Wegs. Mine was very low. It took a CT scan of the lungs followed by a nasal septum biopsy to get me diagnosed.

Anne

[newweg]

the rheumologist was first to mention it based on symptoms, my neurologist says symptoms not due to brain lesions...maybe allergy. Tested neg to allergy and I dont think I have allergoes. On 10mg predisone and zertec morning and night to help fight nasal congestion. When I get stuffy, eyes and swelling get worse.

[Al]

Symptoms may not be due to brain lesions. However, vasculitis could possibly by at the source of all the noted symptoms. (I'm hoping not the brain lesions, but I think you would need a neurologist with some vasculitis expertise to sort that out.)

Al

[newweg]

how is vasculitis different

[Al]

how is vasculitis different
I'm not sure what your question is. Different than...what? Wegener's? Vasuculitis just means inflammation of blood vessels. Wegener's is one kind of vasculitis; there are many more. Some of them are generally associated with ANCA; others are not. My point in raising the issue is that many doctors are unfamiliar with vasculitis and do not consider it in making a diagnosis, even when it is the closest fit for the symptoms.

Al

[newweg]

What you said is pretty much what my rheumologist said. He said I have Vasculitis and a auto immune disorder, he put wegners as a dx for now. My neuro does not connect the brain with it. Though rare, wegs can invade the brain, I think I read in 2% of cases. How do I find a neuro who understands wegners? I have no insurance for 2 wks until cobra can kick in, I had to cancel appts and tests. Wegs neuro in Phila PA area???

[Al]

What you said is pretty much what my rheumologist said. He said I have Vasculitis and a auto immune disorder, he put wegners as a dx for now. My neuro does not connect the brain with it. Though rare, wegs can invade the brain, I think I read in 2% of cases. How do I find a neuro who understands wegners? I have no insurance for 2 wks until cobra can kick in, I had to cancel appts and tests. Wegs neuro in Phila PA area???
I'd check with Dr. Peter Merkel, at the U. Penn Medical School. He is one of the best Vasculitis docs around, and could give you the right referral, or consult with your present neurologist. Otherwise, the next closest for your is Johns Hopkins in Baltimore. They have a full vasculitis department. But you would need a referral. I know that brain involvement is rare, but not so rare that it is above suspicion. Good luck!

Al

[newweg]

Thank you, I will call Dr. Merkel's office! Maybe rhuemologist will refer me th John Hopkins, I see him in 3-4 weeks.

[Dryhill]

:confused1:Hi All

New Member - WG for last 5 years -luckily appear to have been diagnosed early hence (touch wood) no major organ involvement.

However due to Gastro problem (advised not likely WG associated) over last 12 months WG is gaining momentum and subject to updated Blood Tests I look likely that kidney biopsy required and 12 months of Cyclo/Preds which i am not looking forward to.

Off work over 6 months and likely may not return - Has anyone had experience of claims under Income Protection for WG - I have had periods of remission under WG (pred/mx dosages).

Not sure how Insurance companies view WG particurarly as under correct dosage of medication one can sometimes bouts of normality as regards day to day living

Hope furum members can help

Hi henrycandy,

Welcome to the forum. As to your question I am about to pm you.

Jim

[LisaMarie]

So sad...I am a nurse in a small rural hospital and we are like family...I know the places in the city would not accomadate my every 3 months trips to Mayo and KU...o am very blessed...your co workers violated HIPPA as well as ethics...I hope they get fired along with your boss who Fired u....even in nos fault states. They cannot fire u because you are sick

[newweg]

Not everyone is as kind as you. I am happy that most ex co workers are upset, shocked and supportive. I am not defined by my illness or my job. I have treated everyone I encounter with respect.
I always will. Thank you all for your comments and support.

[Sangye]

Thank you, I will call Dr. Merkel's office! Maybe rhuemologist will refer me th John Hopkins, I see him in 3-4 weeks.
CNS involvement with Wegs is not common but is extremely serious and difficult to treat. You can't wait to treat it. You also definitely cannot leave it up to a garden variety rheumatologist to manage. I go to JHU and am fairly certain you don't require a rheumy to refer you (ie, any type of MD is fine). You can call them to verify this. Assuming that is the case, please move quickly on submitting your info to them as described in their website (http://www.hopkinsvasculitis.org/about/appointments/). With the possibility of Wegs in the CNS they will get you in faster than normal.

[HopeinTN]

What are the main reason/sysmpons to suspect CNS involvement?

[newweg]

Thanks Sangye and to HopeinTN....I have a pons lesion amd many deep white matter lesions that were not there 6 yrs ago (my last MRI brain).

[HopeinTN]

Oh ok. I'm a newbie and just like to keep up on terminology and the likes. I hope it goes ok and you get the answers you need. I wish you the best.

[newweg]

Called all my doctors. Rheumologist needs to make referral or at least they won't. I can't get ahold of him, will try again tomorrow. JHopkins will not make appt without all tests AND doctors notes...Will keep on trying!

[Al]

Called all my doctors. Rheumologist needs to make referral or at least they won't. I can't get ahold of him, will try again tomorrow. JHopkins will not make appt without all tests AND doctors notes...Will keep on trying!

Hang in there--this is important!

Al

[newweg]

I will, just don't think I will get what I want until end of March when I have face to face with rheumologist. I think most doctors are reluctant to send me because I do not have a 'clear' dx of anything. Facts are I have facial vasculitis and brain lesions! My case is difficult and no one wants to admit they have no idea. The rheum is my best shot but I might need to wait! JH will not make appointment until all documents are received. I do believe the brain is involved. About 6 yrs ago I had facial and hand swelling, I got work up and doc said you might develop an auto immune someday (this was when I had clean MRI). Symptons went away and looking back were there but sutle, not that noticable...Symptons worse and now brain lesions! I know there is connection.

[Al]

I will, just don't think I will get what I want until end of March when I have face to face with rheumologist. I think most doctors are reluctant to send me because I do not have a 'clear' dx of anything. Facts are I have facial vasculitis and brain lesions! My case is difficult and no one wants to admit they have no idea. The rheum is my best shot but I might need to wait! JH will not make appointment until all documents are received. I do believe the brain is involved. About 6 yrs ago I had facial and hand swelling, I got work up and doc said you might develop an auto immune someday (this was when I had clean MRI). Symptons went away and looking back were there but sutle, not that noticable...Symptons worse and now brain lesions! I know there is connection.

I understand. On the other hand, simply because no one knows what your eventual DX will be is no reason to futz around. As Sangye points out, whenever the central nervous system is involved, there really is no time to waste. 1) Did you point out to the JHU scheduler that the brain is possibly involved? 2) If your rheumy demurs, how about any other doc? Your GP, even? 3) Did you try Dr. Merkel's office? 4) "Facial vasculitis"? Who termed it that? If it was the rheumy, he must realize that a specific DX is not needed to know that what you have is in a certain class of diseases, any of which could be bad (i.e., organ threatening), and treatment should begin quickly. And, for that matter, even more important to use the expertise of a vasculitis specialist ASAP. 5) Do you have anyone to help you sort this out--a friend or family member who is willing to be a strong advocate? We will do what we can to help you through this, but someone on the scene is so much better. Overcoming the medical issues takes a lot of doing. I very much hope that you can speed up this process!

Al

[newweg]

My doctors all point to one another. Two weeks ago my rheumy said vascilitis of some kind he wrote a script for a CT chest and dx: wegeners granulomis. When I called neuoro and told him all we have chatted about, he said the rheumy's notes states sinusitis! He also insists the brain lesions are just there for no reason!! It is frustrating. I am still waiting for call back from rheumy. Family doc who first said you have some type of vasculitis told me to contact neuro. I get the run around. I did tell JHU scheduler all, she said all documents need to be received and reviewed before appt! My husband left in December...he can not deal with any of this. Believe me I know you are right!.

[newweg]

Dr Merkel is in Boston not HUP. I have contacted my doctors and requested records be sent to John Hopkins.

[Al]

My doctors all point to one another. Two weeks ago my rheumy said vascilitis of some kind he wrote a script for a CT chest and dx: wegeners granulomis. When I called neuoro and told him all we have chatted about, he said the rheumy's notes states sinusitis! He also insists the brain lesions are just there for no reason!! It is frustrating. I am still waiting for call back from rheumy. Family doc who first said you have some type of vasculitis told me to contact neuro. I get the run around. I did tell JHU scheduler all, she said all documents need to be received and reviewed before appt! My husband left in December...he can not deal with any of this. Believe me I know you are right!.

i know this is frustrating. Let me put it this way. When you are remodeling your house, you have five or six contractors around to do the plumbing, the electricity, the drywall, and so on. Most of the time, you have a general manager to keep them all scheduled and not working at cross purposes, though sometimes, as the homeowner, you can take on the project management yourself if you are comfortable with that role. But if the general contractor is not doing the job, you may have to fire him or her and find a new one. The same is true in medicine. Particularly with a complex disease, you need a project manager. Most sick people cannot completely perform this role; in the first place, they do not know enough about the medical issues, and secondly, they are, frankly, sick. However, in the modern specialist system of medicine, there is no doctor that will take the time to know your case as intimately as you do yourself. This is why a true advocate can be a major help, to keep the doctor(s) working on your behalf. I am very sorry to hear that your husband decided that he could not handle the situation. You need all the help you can get.

As for the rheumy, who in my analogy should be your project manager, your relationship to him is that you are paying him to work for you. If he is not doing the job, you need to replace him. Here's another thought: You need your car to drive to work; otherwise, you cannot earn your living. You have owned your car long enough that you know when something is wrong. When you hear the brakes grinding, you take it to the mechanic, who says, "Gee, I can't find what makes it do that. Bring it back when it totally fails." Yeah? I think you would find another mechanic immediately. The "no reason" for brain anomalies is not acceptable. True, they may not fit any pattern that the neurologist knows about, but that is not the same as "no reason". Of course, I don't know either what is actually going on, but given your other evidence, the working hypothesis really should be that anomalies are interconnected until proven otherwise; anything else just delays therapy. If your neural issues are, in fact, a part of your vasculitis, it is imperative to know this now, not when the brakes fail.

My thought is that the GP should step in and bring the parties around, since the rheumy seems to be standing aside. However, you can also take matters into your own hands to a large extent. Your medical records are yours, and you have a right to all of them. It may take some legwork, but you can ask for copies of everything. Many records will be on paper; CT scans and the like will be on DVD. If I were you I would gather them all up, make copies for myself, take the bundle down to the Fedex office, and fire it off to JHU with a note of referral from your GP, or any other doc you can beat up for this service. Remember: You are the customer. Any runaround is not acceptable.

I am sorry that I cannot personally make it to New Jersey to help you organize all this, but one of the services that we on the forum can provide is to nag and push and, to the extent we can, hold your hand. Good luck on this!

Al

[Al]

Dr Merkel is in Boston not HUP. I have contacted my doctors and requested records be sent to John Hopkins.

Ah--sorry. There was a recent news announcement that Dr. Merkel was moving to Penn, and, in fact, he is currently listed as part of Rheumatology there. Perhaps he has not make the actual move yet.

Al

[newweg]

I still have requested all records go to JHU. My eye doctor wants $250 to do this. I asked for waiver and waiting to hear. I went to 3 offices and signed release waivers and will get rest in mail. remember, at this moment I am unemployed and no health insurance! cobra will not take affect for 2 weeks. So I am just pushing through. My GP will not 'step on Jeff docs toes". My rheumy is sending referral note, (at least they said they would.) All I can do is sign waivers at this moment and request records. Mayb when I get Cobra all will be at JHU and I can make appt. I have read a lot and although not a doctor, I find it hard to beieve this is not all connected. I mentioned earlier I feel like water in my head, if I turn head fast I am almost off balance and foggy. Everyone thought inner ear infection, rheumy thought eye pressure...all wrong!!!

[Sangye]

Newweg, the reason JHU won't make an appt until they receive everything is that they spend quite a bit of time reviewing what you send. At your first visit the doctor will already know your case in great detail. It's wonderful, but waiting for that process to finish is not wonderful.

Like the others said, be persistent. Don't wait for your local docs to do the right thing-- they might or might not. Let them know that while you appreciate their full schedules, you also realize you may have a serious disease with one of the most severe complications and that time is of the essence. Let them know that JHU will not even schedule you until all records are received and a lengthy review is made. Don't assume that they know that.

[Al]

Doctors and hospitals are allowed to charge a "reasonable" fee for copying records. This is usually much less than a dollar per page. $250 sounds like a lot. I am not completely familiar with how COBRA works, though, to the best of my knowledge, it takes effect immediately upon cessation of your employer's plan, even though you get 60 days to submit your application. The whole point is for there to be no hole in the coverage. COBRA does not apply if you are fired for "gross insubordination", which I assume is not the case here.

To have these legal issues on top of the medical ones is too much!

Al

[newweg]

The stress is unbelievable! Thank you all for your support. When I had eye issue as first symptom last year everyone blew it off, head aches and eye swelling, blew it off, tingles and numbness in extremeties, blew it off. They SEE a brain lesion on my pons and tons of smaller ones in the deep white matter and..OH! maybe something is wrong! I am pushing through but overwhelmed is an understatement! Thanks all! I do appreciate comments and ideas.

[newweg]

COBRA will take a few weeks, however between now and then any medical issues is cash up front and then you get re-imbersed. I can't do that. Maybe I should move to Canada :)

[Al]

COBRA will take a few weeks, however between now and then any medical issues is cash up front and then you get re-imbersed. I can't do that. Maybe I should move to Canada :)
Pluses and minuses about the Canadian system. Nothing is perfect when politics gets involved (and Canadian politicians are at least as wacky as those in the States), but I do like that fact that, in Canada, your ailment doesn't automatically bankrupt you, even if it is extremely expensive to deal with.

Al

[KathyB]

Welcome, newweg! Sounds like you are having a very challenging time. The folks on this forum are thoughtful, intelligent listeners who also provide a great depth of expertise and wisdom. Most importantly, you will learn to be an advocate for yourself -- critical to managing your illness and symptoms. I hope you find answers and relief soon!