fear

oldbuttercup
By oldbuttercup Latest Reply 2011-01-28 13:29:34 -0600
Started 2011-01-15 16:23:16 -0600

Recently my diabetes has gotten worse. I went to see my doctor 3 times in the last month and wound up having to go the emergency room, which led to a night in the hospital. I have been dizzy, unsteady, had trouble focusing, talking clearly,having severe headaches, and difficulty driving. One of my bosses accused me of having an anxiety attack, and of making up my condition. I had many tests done while I was in the hospital. My CAT scan came back within normal range. My Coratid atery came back with in normal range. My blood work came back within normal range. My MRI came back in ABNORMAL RANGE. I feel angry, upset and scared of these results. I proved to myself, if not to my boss that I was not faking. Now my neurologist wants to run more tests. So far they think I have small vessel desease and occipital neurapathy. My primary doctor at this time did not rule out MS. What ever the final tests results are, at this time I don't know how long I will be ambulatoty, what kind of treatment options I face, or if i will continue to get worse.


44 replies

Graylin Bee
Graylin Bee 2011-01-22 22:58:37 -0600 Report

It is frustrating that some problems are diagnosed by first determining what they are not. Among others, many of the autoimmune diseases fall into this catagory. It is also very frustrating dealing with Drs. when they do not know the answers. I hope you get the right tests for the right diagnosis soon.

oldbuttercup
oldbuttercup 2011-01-19 14:39:34 -0600 Report

My latest fear is I am having trouble convincing my doctor and employer why I can't work right now.
Would you like to know why I can' twork right know?
I'll tell you.
Over the last few weeks even walking has been next to impossible at least sometimes almost every day, let alone standing still for short periods of time, sitting still is frequently a problem, showering and sleeping are also problems I have been facing.
I am having trouble taking care of my self, and only with the constant support and assitance of my loving wife, and by the grace of God have i made through these last few weeks.I told my employer and doctor that a 1 - 10 scale is not enough to discribe my level of pain several times a day.
The employer wants the doctor to say I can't do the simiplist things like stand or sit still . The doctor feels if I can even walk in to his office dragging my left or right foot I can work. What do I have to do? Show that I can't get out of a wheel chair without assistance?
My employer said if I can't get the right letter I should take a leave of absence. What will happen to my medical coverage if I do, and to my family. How will I keep our house?
i have the sick time saved up, but without the note worded properly my employer doesn't want to hear it.
signed,
worry wart

kdroberts
kdroberts 2011-01-19 14:48:24 -0600 Report

Can you file FMLA and put in a claim for short term disability? That would give you 3 months and you would keep your job and medical benefits.

kdroberts
kdroberts 2011-01-19 15:01:58 -0600 Report

FMLA is "Family Medical Leave Act" and you qualify for it by working for a company that qualifies. It's a federal program that gives you 12 weeks of time off per year for medical reasons, yours or somebody you are caring for. It's unpaid but your job is protected. Short term disability is a benefit offered by employers, some offer it for free, some offer it at a small cost to the employee and some don't offer it at all.

CaliKo
CaliKo 2011-01-19 15:10:40 -0600 Report

It's not federally mandated that the time off is paid, but some companies do. I've had to use it twice, one company paid my time off, the other didn't.

kdroberts
kdroberts 2011-01-19 15:17:59 -0600 Report

FMLA is federally mandated. It has no stipulation about getting paid, that's where short term disability comes in if you have it.

CaliKo
CaliKo 2011-01-19 15:28:50 -0600 Report

Right, I know, I probably didn't say it very well. I'm not disgreeing with you. I'm just saying that one company I worked for paid my FMLA time off, even though they were not required to do so, and it didn't involve short term disability. The other company I worked for did not pay my time off with FMLA. So it might be worth a question to Human Resources of whatever company oldbuttercup works for.

oldbuttercup
oldbuttercup 2011-01-22 08:27:08 -0600 Report

My employer said the letter I faxed him yesterday was ok,but I still have alot of paperwork left to fill out. The letter gives me until Feb. 20th off. My wife wants me to return to work pain free before then so we do not put ourselves in economic jeopardy.

PetiePal
PetiePal 2011-01-17 12:54:19 -0600 Report

You're in our thoughts and prayers. My sister-in-law has MS and that's tough enough on its own without having Diabetes complicating things. Try to keep positive and not too concerned with the "what ifs" until you have concrete things to go on.

oldbuttercup
oldbuttercup 2011-01-22 08:37:14 -0600 Report

During yesterday's visit to my primary doctor, she said she doesn't think it is probable that I have MS due to the pathology of the spots on the fronatal lobe of my brain. She said usually the spots are more pronounced and there are more of them in MS. That doesn't mean to me I will sue her if it does turn out to be MS. It was just nicer to hear a possible encouraging piece of news from a doctor instead of "DON'T WORRY ABOUT IT".
I also found out during this visit that I don't have lupus. My doctor did order yet another test (another MRI) and a refferal to a neurosurgeon in addition to the doctors I am already seeing.
A nurse that I know from work said that shots in my back in addition to the ones in my head may help with my pain management, at least on a temporary basis.

CaliKo
CaliKo 2011-01-28 12:41:33 -0600 Report

Yes, one thing I've learned about MS is, when it is active, (and if it were responsible for current symptoms) the lesions "light up like a Christmas tree" (you don't want to hear that phrase from a radiologist) when the MRI is done with contrast dye. So, its still an opinion, but hopefully from a doctor that is experienced at looking at lots of MRIs. It's nice to start get some of the things you don't want ruled out, or at less viewed as not likely. I hope they get your condition figured out soon and get you some treatment that gives you relief.

MewElla
MewElla 2011-01-28 08:08:04 -0600 Report

Great news, I know this lifted a burden off your shoulders. Hope today is a good day for you. God Bless You.

jayabee52
jayabee52 2011-01-22 09:25:27 -0600 Report

I don't know about MS, but my briide had Lupis (SLE). She was afraid she had it and her Dr at that time told her didn't see it. As it turned out she DID have Lupis. She had gotten a different Dr, one who was familiar with Lupis, and knew what blood tests to use to make the Dx. She ended up being misdiagnosed for several years. (That was before I knew her)

CaliKo
CaliKo 2011-01-16 22:14:02 -0600 Report

I can sympathize with you. After almost a year of testing, I was diagnosed with MS. As I'm sure you are learning, it's not a simple diagnosis. And it is scary when your MRI is not normal and you are told you have spots on your brain. I think that stressful year and all those nights curling up with a bowl of ice cream contributed to the diabetes diagnosis 3 months later. What a year. That was September and December 2008. Just take it a day at a time and try not to worry too much, it certainly doesn't help. It may not be MS, but if it is, you can talk to me if you want to. Good luck.

oldbuttercup
oldbuttercup 2011-01-17 15:29:07 -0600 Report

Today's Dr visit.
"Do I have MS or not?"
"The three spots on your brain are nothing to worry about, they are age related, and not the cause of your symptoms ".
"You are worrying about things that are not important right now".
"I do not know what is causing your headaches,causing you to get dizzy, and why you have trouble ambulating".
" I am ordering a brain wave test in addition to the nerve conduction test".
He recommended shots to the back of my head for the pain, and low dose aspirin once a day.
He was irritated by my questions and said if I did not trust him to go find another Dr. I am making my symtoms worse by worrying too much. When I asked him directly do I have MS or not he did not give me a direct answer. He did when I told him that his partner ruled out stroke and brain tumors. Basically my wife and I got the impression he thought I was a pain in the neck and he could not get me out of his office fast enough. After his visit today I had some trouble walking. My limp was worse. I used a cart in Walmart. When I got out of the car, at home, and tried to walk up the stairs my left leg was vey stiff. I had trouble making it up the steps. When I made it into the house I had a lot of trouble dragging myself down the hall, I had to hold onto the wall to make it to a chair. I almost collapsed. After about 20 minutes I was able to walk a little better. I am still limping, but not as badly.
Oh my primary called and said I have arthritis in my neck in addition to my lower spine, the pain in my neck may be contributing to my headaches.
So why do I drag my legs sometimes and walk like I suffered a stroke?
None of the Drs know yet and need to keep running test and rule out more conditions.
I guess I am worrying too much over nothing. Maybe being angry about the way I felt I was treated in the Drs. office did agrivate my condition. Just call me a worry wart.

CaliKo
CaliKo 2011-01-18 12:52:39 -0600 Report

You shouldn't have to put up with that kind of attitude from your doctor. Anyone having symptoms as you are would be wanting some answers. Unfortunately the answers don't always come quickly. I'm assuming this is a neurologist and probably even a radiologist looked at the MRI? I'm guessing the doctor didn't answer the question about whether or not you have MS because it is inconclusive at this time. It takes more than just an MRI to diagnosis MS. It is correct to go through the other tests and look for other explanations for what you are experiencing. Often an MS diagnosis is one of exclusion, after they rule out everything else it can be. I'm glad they ruled out strokes and tumors, that's a big relief. I have been told that migraines can cause spots in the brain similar to MS spots. It's not that you are worrying too much over nothing, its more a matter of patience, and making sure the doctor is looking at all the possibilities. If you have any doubts, or continue to feel like the doctor is dismissive towards you, remember you have the choice to go to a different doctor. Good luck and please keep me updated.

oldbuttercup
oldbuttercup 2011-01-18 18:02:56 -0600 Report

Thank you for your detailed reply. allow me to respond to some of the questions and statments you posted.
Yes the Doctor I am writing about is a neurologist, and a radiologist looked at the MRI. The first neurologist pretty much told me that the radiologists were stupid and didn't know what they were looking at. She stated that the radiologists are look for problems that aren't they, because they get paid by the problem. Both neurologists partners did not tell me that they did not know if I had MS or not because of inconclusive tests.
The first one told me I had to speak to her partner, because she was just a consultant. They could have told me they don't know instead of don't worry about it. I tried to tell him that I read that some conditions mimic MS, such as occipital neurapathy. He appeared to become angry at me and said if I didn't like his answers I should find another doctor. Because of my answers to some of the doctor's questions he does not feel I have migraines. I'm not saying my life would be over if I have MS, I just want to know yes or no, not completely blow me off and say don't worry about it.
My wife told me that in her nursing books it states it is not as easy for a doctor to sever the relationship with the patient as one may think. A patient can walk away anytime they want, but a doctor must follow appropiate guidelines if they want to end the patient - doctor relationship. They have to continue to treat the patient until an adequate replacement is found, inform the patient why the relationship is being severed and provide all records of treatemnts, and tests to the new doctor. Maybe he knew this and wants me to be the one to quit seeing him. I just want to know what I have, how serious I am right now, and will I get worse without tratment, or maybe even with treatment.
Thanks again!

CaliKo
CaliKo 2011-01-18 21:12:13 -0600 Report

Sounds like you are on top of it. That's interesting about the process the doctors have to go through, I didn't know that. Some doctors like it when their patients are researching and asking questions, I'm sorry yours seems defensive. I hope you get answers and proper treatment soon. And a new doctor if necessary. Please keep us posted and let me know if I can help.

oldbuttercup
oldbuttercup 2011-01-17 09:49:40 -0600 Report

Thank you for your kind words of support. I hope that since your diagnosis that your stress level has decreased and that your treatment has shown some level of success.

CaliKo
CaliKo 2011-01-17 10:12:20 -0600 Report

I'm doing very well two years later, thank you. I have an effective MS therapy that has kept further symptoms at bay so far, and my diabetes is under good control with diet and exercise. I hope you get your condition properly diagnosed soon and get some effective treatment. Good luck.

SugarFreeZ
SugarFreeZ 2011-01-16 12:19:37 -0600 Report

Have your doctor check your thyroid that causes alot of your symptoms, and so does menieres disease. I happen to have both problems . Its worth checking out since most doctors dont randomly check these things. GLuck

oldbuttercup
oldbuttercup 2011-01-15 20:52:27 -0600 Report

Thank you all for your encouraging replys. Right now I am on diet and excercise for my diabetes. I used to be on glipicide, but my blood sugar used to go down in to the 40's. I take enalapril for my blood pressure, and lovistatin for my cholestrol. The neuroligist suggested tylenol for my severe head pain. It helps a little bit.
It sounds like some of you also have had a very difficult time. I wish all of you the best and the least amount of suffering. i will include you wonderful group of people in my prayers.
Again thank you for such a warm welcome into your group.
God bless all of you!

Dr Gary
Dr GaryCA 2011-01-15 18:51:15 -0600 Report

Hi!

I am sorry to hear about what you are going through right now. There are very few things in life that are more difficult to deal with than a medical diagnosis, with alll of the uncertainty that comes along with it. To have been diagnosed, and dealling with the ongoing challenges, only to learn of a potential additional diagnosis, is even more difficult.

It is normal to be fearful and anxiious, and even to ask, "Why me?" I suspect that you are also feeling helpless as you wait to be scheduled for addiitional tests. You can only know what you can know at this point. But still, I am sure that you can't help but imagine different outcomes, some worse than others, as you expressed in your note.

During this hard time, I would reallly encourage you to get as much support as you possibly can. Reach out to friends and family members, let them know how your are feeling. They may be experiencing fears and anxiety of their own. You may be able to support each other. You might need to remind them that you understand that they have their own fears, and may also be feeling helpless, and that all you need them to is listen right now.

This would also be a good time to reach out to an objective listener, a counselor or a member of the clergy, who can listen and be supportive. Also, if you feel that your fears or anxiety are becoming overwhelming, and are interfering with your ability to function day to day, including at work, then I would encourage you to seek out a mental health professional right away.

Don't go through this alone!

My thoughts are with you! Pllease stay in touch with your friends on Diabetic Connect! Keep us posted!

oldbuttercup
oldbuttercup 2011-01-15 21:10:33 -0600 Report

Thank you Dr Gary
My personal rock is my beautiful supportive and understanding wife.
I know that lately I have been more of a pain in her keaster, but she is still being very wonderful to me.
God bless her!

squog master
squog master 2011-01-16 19:44:05 -0600 Report

A personal rock is a great to have. My brother has been mine through the last 18 months. I think I can honestly say that if I didn't have him I probably would have died. Those of us who have a personal rock can count ourselves fortunate.

squog master
squog master 2011-01-17 15:27:15 -0600 Report

I had 3 wonderful big brothers! Our oldest brother passed away in 2006. One lives in FL but I got a lot of phone support from him also. My middle brother lives 2 hrs away. While in the rehab center ( 8 months) he was there almost every weekend. After I got out he still came every weekend til I got stronger & could do for myself again. When my Mom passed in 1994 my brothers made sure I "taken care of" before hand. They went to Mom as her health was failing & told her to put the house in my name so I had a place to live when she died, that if I hadn't been there to take care of her they would not have had her for as long as they did. One friend put it best. She said, "Your parents did something right."

jayabee52
jayabee52 2011-01-15 18:09:42 -0600 Report

I understand the feeling of uncertainty you face, 'cause I've been there too, a couple of times in my life. I had some TIAs ("ministrokes") in 2005, which caused many of the sympoms you mention. I had to give up my work as a Home Health CNA because of needing to be steady on my feet for transferring patients.

Sne when I had to go on dialysis, due to a kidney infection, I thought my life was over and for a time considered not going back to dialysis and let the End stage renal disease take me. Had i done that I would have missed a lot. I had been divorced out of a 25 year marriage, and thought I had no chance for another relationship.

But I didn't throw in the towel on my life and continued on dialysis. After about 10 mos on dialysis, the infection got resolved (which doesn't happen often) I met a wonderful lady online & we hit it off. Eventually we married, and I gained a whole new circle of family & friends who love me very much even after she passed in July 2010.

Please don't give up!

God's richest blessings to you and yours!

James

oldbuttercup
oldbuttercup 2011-01-15 21:01:32 -0600 Report

A personal reply to you Jayabee your story sounds very encouraging and insparational. I am very sorry to here about the loss of your wife.

jayabee52
jayabee52 2011-01-22 12:32:23 -0600 Report

Thanks you for your kind words.

She was a very special lady. She had a lot of what we laughingly called "medical challenges". Even though she became blind @ age 14 (was not disabetic at the time) she graduated with a MSW degree & took and passed her CA LCSW certification her first time through (some sighted people have trouble with that). She was an exceptional lady in many ways. She was diabetic which was brought on by her congestive heart failure (so I'm told) She had a lot more medical problems. I won't list every one of them but some of them were very painful, but she rarely had a cross word for anyone, including me, which is remarkable since we were together 24/7. In fact the afternoon she passed her gastro Dr learned of her passing (o7/23/2010) and called me to convey his condolences and to sing her praises. He said of all his patients she was his absolute favorite, because no matter how bad she was feeling she always asked about his and his family's welfare, and would ask about his chileren by name. She would often think to bring him a joke to share or some little humorous gift. Many of her medical team felt much the same way,

I am thankful she let me into her life. because she had a lot of heartache on the romantic front too. But she did, and I am the better for it. I'm told by her closest friends that her life was better because of me. It was a short "ride" (as I suspected it might be) but I'm glad I took it.

I miss her tremendously..

Thank you for your kind words and reading my remembrance of her.

James

BandonBob
BandonBob 2011-01-22 13:37:42 -0600 Report

I like your reply. I can relate to all of it so well. My late wife had polio when she was six and even though she wasn't expected to live conquered it all and became a teacher. AFter we married things went well untill she was about 40. Then she started having the symptoms of the polio coming back. For probably 10 years we chased a diagnosis and doctors ruled out all sorts of things but could not ell us what was wrong. Finally in the early 90s they started talking about post-polio syndrome which turned out to be what was going on. As thin gs progressed she lost her ability to walk on her own, then to dress herself and finally became unable to do anything for herself. At the same time her hearing and sight began to go. In the case of her sight the doctors again couldn't find out why as her eyes were physically fine. They said post polio could not be the problem but finally after ruling everything out they decided it was indeed polio related. Finally she passed away from the effects of post-polio syndrome. In the 40 years we were married never once did I hear her complain about getting a raw deal. She even told me that she was happy she had gotten the polio rather than her little brother because it was easier for her to handle in the world than it would have been for him. Like your wife she was very special with a greta spirit that saw her through everything. She is my inspiration and the reason I am a fanatic about watching the diabetes because I could never let her down. YOu definitely have my sympathy for your loss.

Harlen
Harlen 2011-01-15 17:47:23 -0600 Report

I am sorry your going thru this.
What are you taking for D? and how much?
We will be there for you if you need us
Best wishes
Harlen

oldbuttercup
oldbuttercup 2011-01-15 21:03:35 -0600 Report

thank you Harlen.
best wishes to you to.

roshy
roshy 2011-01-22 11:41:12 -0600 Report

Where do all these un empathic doctors come from!! he sounds like a big egotistical 'a' hole to me!!! I had the same problem with my GP too!!
last year i suffered a massive DKA and the usual happened, i went to the GPs office sat there crying for a half hour and all he could say was it was my fault for not controlling it the way i should have and for being essentualy upset about the whole thing!!!

well i felt like it was something to be upset about, i spent a whole week in icu ( i was on my own at the time down the country!)thinking id never see my family again and my time was up at the age of 22!!!

I finialy had enough of his in humane attituide and said,

' well if you had to stick a needle in your arse 4 times a day , i bet youd get sad too!'

(haha! i wont even tell you his response)

These doctors should think twice before they speak to their patients in a demining judgemental attitude! Its unfair and dangerous sometimes to the patient!! plus they get paid way too much and should have the decency to watch their bedside manner!