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I posted with all my crazy symptoms that started several years ago. I live with extreme dizziness, severe pain, skin get's ice cold, but feels like severe sunburn. I was dx with PN years ago, but they couldn't figure out many of my other symptoms, like most told I was depressed or a nut. However, I have many obvious symptoms my GP see's.
All my problems started after elbow surgery.
It started with ear ringing, then pain spread to my groin, feet...nerve test showed PN, but other Neuros say it's not, but can't figure out abnormal nerve studies. Soon after it started they did a scan on my chest that was clear. Months later another CT, this time liver swollen, nodes swollen, spleen swollen, 3 lung nodules, ect. Followed up with scans for 3 years. Also ran a low grade fever for 2 years. Say many Doctors, Med schools, ect. Basically told I was depressed. The only thing that depressed me were Doctors.
About two years in I notice a pain in my neck in my Adams apple. You have to press on it, but if you do it hurts so bad it would pass you out if you pushed. A scan showed nothing but another swollen node, but not in that exact location. This pain in another few years went to the other side. Strange, when I press on it my ear ringing gets much louder.
My biggest problem is when I exert my skin goes ice cold to other people, but I feel burned, I get dizzier than I am.
A dentist also found a red spot on my palate, tested, just inflamation. About the size of a dime. It's been there for years, but when I have what I call a relapse and my symptoms get much worse, it grows large, almost half my palate....and is painful, Also get more pain in my right and left quadrant areas of the torso, where spleen is. Course I feel all symptoms are tied, but my terrible Neuro says see GP for that. She is terrible, but I havn't found one that will help. Most just look baffled and ask me if I'm stressed. If you go to a med school, they just look at your file and say are you stressed. None take time to look at all the test, symptoms are listen to possibly tie them together.

Through all my studies I wonder if my thyroid may be messed up. Level were a little low, but not abnormally low. Wonder if the pain in my neck is the thyroid, even though a scan doesn't show anything. Course hasn't been tested in years.
I understand Doctors say stress all the time to these things. Certainly in the beginning I caused some symptoms due to stress of what was happening, but was a stable happy person, probably the happiest in my life when this happened. I lost my job of 20 years. I started my own business and did well for 3 years until I now fall apart if I exert, so slowly my business failed. Although I told my Neuro I was so dizzy I fear of driving, had several small wrecks and once totaled my car, she didn't react. I was scared she would take my licence, but nothing, but I can't drive.
I'm desperate. I have a great wife, but we are now losing everything. She will have to move in with relatives. Hate being a failed father. If I can't find help we will lose it all...well, we will lose it now, but maybe one day can put it together.
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Avatar universal
Yes, that was one of the first things they tested for. I talked to my GP today, thinks it's one of two things, either a wierd response to a crushed elbow or I got some virus that effected my nervous system. Got good news and bad news. They cancelled most of my bill, but can't see me anymore. I hate losing him, but I was paying little to my bill, but at least they took it off the books, that's rare. I just can't beleive Unum could screw us out of all our insurance.

I know this isn't stress, but at the same time there is a lot of stress. I almost laughed when my Neuro says not to stress. How do not stress when you're forced into poverty and watch everything you've worked for vanish. In the end, I can do without things, but it's just a fact, you don't work, you have no food, shelter, ect. I guess that's just the way it suppose to be. As bad as it is, I know it's not someone elses problem to pay for it. Just hard losing it all, but I'm sure some have it worse than I do. It really is sad that people have to deal with this. I thought I did all the right things to protect myself from this when I was well, plenty of insurance, ect....but  I was mistaken...Please read the fine print on all your insurance, including your LTD.

I love my home and they foreclose next month and I can't stop it..I just can't believe it hasn't sold. I only owe 4 years on it...so close, about 70K. Has a tax value of $160K, but does need work. Guess the problem is you can find several foreclosed homes nearby the same value for the same or less money than I'm asking. I thought I could at least make 10K off of it and find something cheap to rent and have enough money to survive for a few months, but it's sat here at 83K and no ones looked at it.  

Just tough luck. I just hope my wife and son can find a better life as much as it kills me not to have them. It's a much worse pain that what my body feels, but I would rather them be OK than go through this. After she moved out, I found one of her scribble journals and she  often wrote in..One thing broke my heart.
it said.. " What happened to that man I once knew, so strong, so confident, the man I fell in love with."

I miss him too.......
Helpful - 0
Avatar universal
This may be a long shot but have you been tested for Lyme's?  Years ago, my daughter had odd symptoms including some that were neurological.  Testing for lymes is not very accurate and she never tested postive but after seeing all kinds of doctors in two different states, they decided that lymes was the most likely cause.  They treated her for 2 weeks with IV antibiotics and she got better.  She came down again a number of months later with some similar symptoms, tested negative but they still treated her for Lyme's, this time with pills.  The only reason the original treatment was IV was because the brain was involved (she had lesions in her cerebellum) and its easier for IV drugs to get to the brain than tablets/pills.

When she was going thru this and I was reading the internet, I discovered a theory that many people treated for MS actually have Lymes.  True or not?  Who knows when the tests for it are not very reliable.
Helpful - 0
Avatar universal
Thanks....I don't know about RSD. I've talked to a few that have it and they said they had the cold skin that burned, many to the point of suicide and many have. Mayo mentioned it, but I couldn't go back. I guess Neuro's differ on it. I've talked to two up here and mine doesn't believe it exist, the other says it effect just the spot of the injury, but all the info on the net doesn't agree. I guess it's just another disease process that most don't accept or understand.Seems that most that get RSD go through years of torture before someone believes them or they get lucky and find the right Doctor. I think that could possibly be it, because some say the pain is so bad you can't shower, wear clothes that touch skin, ect...and that's how it feels. For the last year or so, my wife got where she was scared to touch me, because I would cringe....just doesn't make sense.

My biggest hope is when they foreclose that it will take them months before they put me out...I've talked with several that have stayed in their homes many months before.

I really don't care what happens to me, I just want my wife and son to be OK.  It's really sad that so many in America are left to rot on the vine.
Helpful - 0
230262 tn?1316645934
gosh, I feel so helpless and wish I could do something for you. I will keep you in my prayers.  Is there any way you can apply for state medicaid??  I know that wont help your situation with the house being foreclosed but at least you would have medical insurance again and maybe finally find a doctor that could help. I sure wish Dr. HOUSE was a real life doctor, he surely could figure it out.

btw Im sure youve been tested for it but there is some disease/syndrome that causes some of your symptoms- particularly the cold skin/pain...i cant think of the name...reflex sympathy syndrome or something like that?? Maybe someones already mentioned it to you. I sometimes miss posts so..  
Just know that someone here in Ohio is praying for you and I hope things get better for you soon. You dont deserve this.
Helpful - 0
Avatar universal
I think I had a string of just bad luck from Doctors. I decided to go to Chapel Hill after Mayo, but nothing came of that. I guess what makes me mad is they say I created in my head. I told them to put me on a treadmill or let me walk around for awhile so they could feel my body and was told that wasn't a test. I think Mayo may have hit on something. The one Neuro did some reflex test poking certain areas in my body that caused a severe chill reaction. He would talk to the intern and say see that....I can't remember what test is was called, except they paint you with powder and heat it up and scan and it shows skin reaction.

I got so frustrated with Doctors that I just quit trying after Chapel Hill. I made the appt and the Neuro there just scanned through my files and said he would send his opinion to my Neuro. I told him she didn't send me, that I made the appt. He then sent me to Psychological Tests to determine if I was making it up. I met with her twice and she said why stress was a factor, I wasn't making it up. I actually had a spell while seeing her when my skin went cold and she felt it. These visits were years ago and then it may take hours for my skin to go cold, now it happens rather quickly. My GP believes me, but he says it's just a case of no answers. I told him somehow I had to find a Doctor that could put the symptoms together instead of wanting to treat them as something different. He just thinks something happened from the fall, since it all started after that.

Anyway, I'm screwed now. I ran out of money 5 months ago and lost my ability to afford med insurance. I bought it through my company that went under and couldn't afford it. It was that or house payments, which I'm now 5 months behind. Now my Neuro won't see me...I'm just told to go the hospital. I did once during a bad spell, but in the end got another appt with a Neuro...which I can't see because of no insurance.

They wanted to put me on disability...told just my nerve test could do that. Problem is I lived off my savings for the better part of a year and didn't pay myself. I had LTD that I had paid for for over 20 years, but they pay based on your last quarter....I have no last quarter. I was shocked. So I had no salary to determine it, so can't draw it after paying for it so long. I just figured when I needed it they would go back to your last proof of income. Because I didn't ask for it, I lost it. So I thought unemployment. Same problem, no last quarter...I'm 46, have worked full time hours since 14 and never drawn and couldn't draw it...Obvious, my stupidity, I just didn't know.

My wife moved with my son. Not out of hate, although it's been hard. She believes me. She feels me and see's my body do wierd stuff all the time. But they have to eat, ect. and moved in with her parents. Her mom is rather pissed at me, just says go get a job. Can't drive and can't function if I exert. I've never been lazy. I didn't become the head of a Company the last 10 years I worked there before they let me go due to my illnes. Even then I made more money for a few years after working for myself  until my body just totally went. I forced myself to work in extreme pain and dysfunction for years.

My home will be foreclosed on Jan. 1. I'm trying to sell it. I owe 4 years on it. The housing market is terrible. We have several foreclosed homes in our area still sitting for about the same amount. Still, I can't believe someone hasn't jumped on it. I was just asking 80K what I owe, tax value is 150K, but it doe's need a lot of work... I'm just praying the sheriff doesn't come put me on the street. I have no family or place to go. My wifes parents are all but broke. I was paying a lot of their bills. They can barely eat. We were never rich, but lived a nice average middle class life and now I live in utter poverty. I do have stuff I sell to eat, but that's running out. My hope is they may takes months before they kick me out.
I just want my wife and son taken care of. She won't divorce me, says she loves me and somehow we'll get back together...I hope so, I just don't see how. I would rather she moved on. They deserve better. I can't provide, so they need someone that will.

Well, enough ranting. It is what it is. Just can't believe I got here or how. I do know if I got my body back or some help I could make good money again...just don't know how to get it. I couldn't with insurance, certainlyly not without.
Helpful - 0
547368 tn?1440541785
Wow! I know they are busy but I have never heard of that type of treatment. We live about 4-5 hours from a Mayo Clinic (Minnesota). Our neighbor and long time friend is has been followed and treated there for a fairly rare condition over the last three years. From day one they always schedule his testing over one or two consecutive days.

I am sorry that you did not have a good experience. They saved our friends life and keep him functioning and comfortable. It may be beneficial to call again, explain your last experience and see if they have better scheduling at this time.
Helpful - 0
230262 tn?1316645934
=(  Im sorry your visit at Mayo was so bad. I feel very frustrated for you. I really feel for you and wish you could get adequate treatment! I hope someone here or on another one of these forums can help you. Do you read other formus here? Im wondering if anyone else has these same mysterious symptoms that has a diagnosis (a correct one, i mean)? Sometimes you stumble across things like that by accident. Keep reading and posting, and hang in there.
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Avatar universal
I actually went to Mayo my second year into it. I didn't have much money, but scheduled two weeks down there. It was probably my most frustration endeavor.

As many know, you can wait without an appt in stand by. It doesn't mean you'll get seen, but you might get lucky before your appt. I tried it and left. I was in too much pain. My wife called them and told them and a lady in that dept told me to come back and they would work me in. So I went back. I waited 4 more hours and was then told they couldn't see me...it was like..why tell me to come back.

The morning of my visit I got a call from someone that I could hardly understand wanting to cancel my neurology visit that day and see me in 3 weeks. I raved I was from 3 states away..so she saw me. Course you see a med first year intern...that was the one that tried to cancel me. Finally the lead Neuro came in and wanted to do MRI's, CT's, bloodwork, and some test where they paint you with powder, heat you up, ect. I had many recent MRI's, CT's and blood work..He still wanted these test, so I agreed. Something came up when the intern said the man that does the powder test was out. I told the Doctor I probably couldn't come back, had two weeks. He promised me then they would work all my test in those two weeks.

So, you go wait for your schedule...after two hours I didn't have one and ask, was told they would get back. I actually fell asleep and woke up. I was in the room by myself and a lady was cleaning up and asked me what I was doing...waiting. She went back to the PC and said I would have to come back in the morning for it. I did...They had test spread out over 3 months, like one every other week. I would lost my job then and begged, told her the Doctor promised....Nothing, I just went home.

One suspected RSD. I saw two other Neuros near to discuss it, one at that time hadn't heard of it, my current one said it doesn't exist now.

Then later I got a $7000.00 bill. Ins paid $4000. I argued the rest down to $1000. How could a bill be that high. I saw two interns and two Doctors, about 3 hours of talk, no test.
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Avatar universal
Ha ha, I relate to your "doctor" adventures.  I had doctors accuse me of drug seeking behaviors, even though I was underweight and literally grey with pain.  I didn't know it might have helped a bit but I had a doctor offer me an anti-depressant, but nothing else with it - I should have taken it as it might have helped me not feel so suicidal.  I had another one offer me Valium and a referral to a psychiatrist, which I told him to shove.....Jeez, it is different for a woman, one, and a minority - well, goddess help you; you are an hysteric manifesting drug seeking behavior.  My goddess, they nearly ruined me with that stuff, but I did eventually find a decent guy.
Helpful - 0
547368 tn?1440541785
I hear your desperate search for answers. I sincerely wish I had one for you. I understand your frustration. My heart goes out to you.

I've never heard of depression or anxiety causing, "liver swollen, nodes swollen, spleen swollen, 3 lung nodules, etc....low grade fevers.." I think the suggestion to have a consult at one of the Mayo Clinics is a good one. Please give them a call.

Let me add that you are not a "failed father." These are circumstances beyond your control. You have failed at nothing. I know this may sound like a lot of bunk to you but you have lost nothing important.

Some years ago I had a MVA that by all medical accounts I should not have survived. My husband and family were called together several times to say their goodbyes. I was hospitalized for near 6 months. After requiring the jaws of life to free me from my little sports car the ambulance took me to ER where my wedding ring and 3 diamond rings were cut from my fingers. Several days later my distraught husband took them from his pocket and laid them on the dresser. Long story short we were burglarized and among other things my rings were stole, including my precious inscribed wedding band. When my condition improved a bit my husband informed me of the incident with tears in his eyes and head hung low. From my hospital bed I reached out my hand to him and asked if anyone was hurt during the burglary, no was the answer....."but you've lost all your rings."  I said, "Than I have lost nothing." I comforted him saying, "They were only things, it will be ok."  

Sometimes it takes tragedy to realize what is important in this world. Love, life, children and soul-mates are not replaceable, most everything else is. I am sorry for your financial condition, it's tough I know, I've been there. But you still posses what's important in this life. Don't look back, look forward. We are here for you if you'll accept our comfort and empathy.  

I wish you peace,
Tuck
Helpful - 0
230262 tn?1316645934
Im so sorry you are going through this. Have you ever considered going to one of the Mayo Clinics? Arent they supposed to help people who have complex/difficult conditions and work as a team to diagnose and treat you? Try going to mayoclinic.com and read their website.
I sure hope you can get some answers and finally get treatment so you can start feeling better again. Please keep us posted, or just vent whenever you want to
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