Just need to vent a little

C Craft

Well-Known Member
I am so whizzed off at the moment. If I put it to words I would be banned!! My wife has been having a terrible time in addition to all the problems she has been having with an auto immune disease. She suddenly begin having seizures at the beginning of last month. The first ones were real bad! Since then they have varied in severity! So with all the problems they decided to have her do a 3 day EEG. Since we couldn't get an appointment till the middle of next month to go over the results. I used the patient portal to reach out to the doctor and ask if he could share the results of the EEG. Perhaps they might be able to change her meds or understand more about how to treat them, etc.!

This was the neurologist's reply!! "The EEG did not demonstrate any seizures; and I understand she did have her spells during the study, so overall a good result."

Are you for *^&^%#@&^* real???? So maybe seizure may not be the correct terminology but to lessen what is going on with her to "spells" is not only a condescending attitude but at the very least shows a failure to grasp the problem and a complete lack of professionalism!! I have brief moments of one of those so called "spells" on video!
From my research, not all seizures show up on EEG's. Also the more I look into this it begins to look quite possibly "Epileptic seizures"! And I know once again the non-trained laymen is putting forth a possible diagnoses! So if I am wrong I am at least trying to figure out what is going on with my wife. Before these "spells" kill her!! I live with them everyday and they are scary to say the least. However what scares me the most is someone trying to minimize them to "spells" ! Without even the common curtesy to entertain the fact that something that is happening should not happen to anyone! To suggest that stress can cause these "spells" is a complete and total cop-out to keep from saying what needs to be said. I don't know what is causing this!! You yourself said this was beyond your expertise when you said you wanted us to go see another neurologist at the University of Southern Alabama! Now when you are faced again with something that is beyond your expertise, you demean the patient and call their problem "spells" !


I think I will stop here as if I continue I am going to blow a gasket!!
 

Chris623

Well-Known Member
C Craft,

This is my first post on the forum (as I yet don't know enough about the craft of blade-smithing to comment) but your "rant" seemed an appropriate place to start.

My late wife died 18 years ago yesterday from Pancreatic Cancer. When she first started showing symptoms, a Doctor was recommend as someone who might be able to figure out what was wrong with her. We went to the office for her appointment and she started talking with the Doctor, who kept brushing off her symptoms as if they were no more serious than mere headaches. She had 13 specific symptoms that had puzzled several of our friends who were in the field of medicine. Any way, they Doctor literally brushed her off. Didn't recommend any tests be run and added that when my wife scheduled another appointment, only come with one or two symptoms to ask about because her time was needed for more serious patients!!!!! We found another Doctor the next day who sent her in for a Cat Scan. He read the info obtained from the scan right at the procedure and told her to go straight to his office afterwards. That's when he told us she only had 90 days to live.

Find a better Doctor........someone who actually read their Hippocratic Oath. I learned a long time ago that the plaque on the wall behind the Doctor only claims they are licensed to "PRACTICE".....................but that doesn't mean they know anything.

As soon as I finish my diatribe, I'll get on my knees and send a prayer your way. I'll even send one to the Doctor. (who has no bedside manner)

God Bless you and your wife.
 

Sean Jones

Well-Known Member
Hang in there Cliff. I'm not sure what to say other than that. You are a good man who is in a tough spot. I'll send up a prayer for the both of you.
 

Von Gruff

KNIFE MAKER
And a prayer from here as well Chris. Having a family member facing unknown symptoms can be very stressful as Lyne and I know only too well. We have spent the last 6 months waiting for a specialists appointment which came about yesterday and in our case the results were very positive but it it the waiting and not knowing that is so hard to be positive through so my prayer will include you finding a doctor who will take your serious symptoms seriously. Bless you both
 

bladegrinder

Well-Known Member
Cliff, my prayers go out to you and your wife. having a doctor that either doesn't give you answers or acts like they don't have the time of day for you is unacceptable. you need to see if you can find another doctor, and when you do make sure you get ALL the test results, scans and files from any previous offices. I stormed out of a medical center one time with a stack of records and never went back because of one doctor.
on the other hand, I was wrapped up with a non profit transplant hospital for a few years and the respect and dignity provided there vs the local hospitals was like night and day.
you just need to keep at getting better answers from somewhere and, or someone else.

Now, stepping out in left field...have you tried medical marijuana?
you know it's pushing thru Florida now and a lot of people claim it helps.

Just to edit....I don't personally know anyone that has tried the pot approach for pain but it's been in the news so much lately with so many story's of it alleviating pain for so many folks it's something you should look into.
 
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C Craft

Well-Known Member
Guys I do appreciate the comments and prayers! I think what irritates me the most is we trust our doctors to the right thing for us and our loved ones. So if you are over your head, say that. I won't think less of you for telling me, you don't know!! However when you try to talk down to me like I don't understand the problem. Well,...…….. I am man enough to admit when I don't understand, …………………. are you.

You see my wife's initial illness could have been helped if the Neougolgist that was treating her at the time had been good enough, not arrogant and opened his eyes and mind. Transvers Myelitis if caught early enough can be stopped or in some cases completely turned around with massive does of IV steroids! However it was 9 months later before we go a true diagnosis! At that point all you can do is too treat the problems that TM creates! The diagnoses was made from an MRI that was done the second day my wife was in the hospital!!
Not only did the Neougolgist bungle the diagnose, he continued to try and treat my wife for migraines and went so far as too suggest this was all in her head!! We asked if maybe an expert at a larger hospital might be able to help. He sent us to UAB at Birmingham! When we returned for our next visit. He had not yet received the results from UAB. When he asked us what they had said, I told him that she had been diagnosed with TM! His response was, oh I doubt that.
That is when I stood up and took my wife by the arm and told her and him we are done. I no longer need your services. We walked out, mid visit!!

So forgive me if I see the same thing happening here. If you are seriously trying to tell me she had a spell, you need to go back to the books, because the last time I looked a "spell" is not anywhere in the annals of medical terminology!! That is what they use to say about crazy ole Aunt Alice. You know ole crazy Aunt Alice had one of her spells!!!! I am sorry I don't find that amusing at all when it is applied to my wife!!
 

Chris Railey

KNIFE MAKER
Cliff as always I am praying for you and your wife. If I get started about doctors I will more than likely get us both kicked out of here. I will just say this...I treat doctors as I treat car mechanics. The second time they say “I don’t know”...I find a new one. The two jobs are very similiar if you think about it...diagnose and treat that is it. I am blessed to have a great mechanic still looking for a doctor.
 

Drew Riley

Well-Known Member
Not that it's my business, but I'm curious if she had what YOU saw as a seizure during her 3 day test?
 

C Craft

Well-Known Member
Drew, she had three of them and possibly four. I have got to where in the last two months I rarely leave the house!!

Each time she had a seizure, I hit the little plunger button, to mark it on the EEG. The one I am not sure about she had during the night. My wife has not been able to sleep in a bed now in about 10yrs. She sleeps in her recliner. She had a seizure that must have started about 11:30 that night and went on for over an hour. I think that may be the one I recorded part of on my phone. Anyway after these seizures she is totally exhausted and usually she will fall asleep for anywhere from and hour to three or more hours!! When I realized she was about to have a seizure, I walked her to her recliner!

She had the seizure and then went to sleep in her recliner. Since I have been having neuropathy pain in my calves and the bottoms of my feet, for about the past 3-4yrs. . I can't sleep in my recliner anymore. So I gave it up about 1:30 AM and finally got into bed about and tried to go to sleep. About 2:00 AM I still had not drifted off and my feet and legs were driving me nuts. I got up and took some medication and went back to bed about 2:30. She was still asleep in her recliner!!

When I got up the next morning, the first thing she asked me was do you know why I was asleep in your chair. I stood there a second, and told her when I went to bed you were still asleep in your own chair!! She said I woke up about 4:15 in your chair. My theory is she got up and had another seizure. She felt it coming on and got to the nearest chair. My recliner.

The seizures are different from the first ones she experienced. During the first ones she had head to toe involuntary movement. However she would often stay on her feet. Although her body and head, arms and legs continued to dance uncontrollably! She never closed her eyes and she was totally aware of what was going on. She would even briefly respond to me.

The one's she is having now her legs begin to buckle. The very first one of the recent seizures she had I found her backed up to the door to the garage. Her legs were about to buckle and I knew I had to get her sitting down!! Her eyes roll back in her head and they never open again to the tail end of the seizure! She can hear me I have determined at some point in the seizure. I have asked her if she needed water, as the breathing it intense and it dries her mouth out! I can tell the difference between the movements of the seizure and her responding to me! I always give her just a sip of water with a straw between my fingers. So I can feel the cold and pinch the straw off with my fingers, if I need to keep her from getting too much! Sometimes I have to instruct her how to use the straw as she will just let it lay there and she seems to forget how to suck on a straw!!

However when these seizures are over she is exhausted and will go to sleep When she wakes, she remember nothing about that time period!! I suspect these may have been going on longer than I knew. She told me one time she would go to do something in another room and then she would find herself there, hours later and could not explain what happened to the time! Something different about these is when and if she is able to verbally respond to she seems to be in a different time period! The first time I realized this, she was crying as if she was very upset. I asked her if she was hurting and she responded to me, "the baby". I first said darling we don't have any babies right now! She again says the baby is crying, he is hungry. Then in a minute she says again Mitch is hungry, our son is 38 yrs. old! Trying to appease her, I said he is OK I gave him a bottle. She raises her voice and says NO! He needs vegetables and cereal!! That is why he is crying!! I just told her, I will take care of it and please just rest!! She never responded to me for the next five hours. She slept most of that time!! This has happened twice and the other time she was asking about the baby. It was our one grandson this time. He is now 9 yrs. of age. Not a baby!!

So yes, I have seen the seizures, the good the bad and the really ugly! Maybe this will help to explain why I was wizzed off at the choice of the word, "spells"!!
 
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Drew Riley

Well-Known Member
Wow. Well, I certainly hope they are able to take a much deeper look at the test results and gain some sort of insight. I know what it's like to watch your spouse suffer from severe medical problems, as well as to see the results (or perhaps the lack thereof) of doctors overlooking or missing things.
Thoughts and prayers to you and your wife.
 

C Craft

Well-Known Member
Guys, as I stated before I appreciate all the good thoughts, well wishes, and prayers. I am usually a very private person. I received a message tonight that I was looking for pity, (the message not from this forum)!

So I informed them I was not looking for pity but for Divine intervention for my wife! However I would settle for someone to have that ah ha moment! When reading of my wife's plight they realize they may actually know something that could help!! I mean you never know maybe we got a doctor that loves to make knives, a nurse a former medic, someone who has experienced it, anyone that may have that one piece of info that ties this all together!!

No friend, I am not looking for pity, just insight!! Damn, this world and the people who make it up, get stranger by the day!!
 

Smallshop

KNIFE MAKER
Praying for you as the Lord brings you to mind in the days to come. SO sorry to hear of the bungling from the docs....this has been much of my experience also. Cliff don't forget to spend time in the Word....it's sometimes the only comfort we get in tough times.
 

C Craft

Well-Known Member
OK, so here is the update. I took the high road. However I stressed in no uncertain terms the use of "spells" was demeaning, dismissive, and a down right dangerous approach to something as serious as this was. He actually apologized for his choice of words! Wow that had to hurt!

He then went on to explain that the readings of the 3 day EEG did not meet the scientific parameters of a seizure! However it did not mean that there was not something happening!! So we are at an impasse, or more commonly called a Mexican standoff!!

Patient portals have a limit on the amount of words you can use in a response. So cutting you are arrogant @$$ $*()*^ who doesn't know his head from *^^$# ()*&^$@ down to.

I am not finding your attitude acceptable. While the EEG may not show the electrical activity in the brain consistent with the word seizure, there is something life changing at the least and quite possibly life threating! This seemed to get his attention! In a way I hate to loose him as there are few doctors that have treated TM. The underlying cause of my wife's entire problems. The fact that he trained under the man who diagnosed my wife's TM at Birmingham UAB. That fact doesn't hurt his position when deciding on working with him or dumping him either!!

I have thought about moving to Birmingham, although the city does not appeal to this ole country boy at all. Birmingham UAB has one of three clinics in the entire world that can treat the entire patient. A TM patient can get primary care, eye, specialists in a dozen fields and it is all under one roof!! So if we can not figure this out, the ole country boy may have to give in too the need for better care!!

Or as my wife would say I didn't go all redneck on him, just showed him my farmers tan!!! Ha Ha!!
 
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KenH

Well-Known Member
Boy, this is a real bummer for you 'n wife - and the whole family is wrapped up in a medical issue like this. I didn't get a chance to see this post before I left town Friday morning and just now getting back to it. As always, you KNOW my Prayers are focused on you and your wife. I know the medical issues BOTH of ya'll have.

He then went on to explain that the readings of the 3 day EEG did not meet the scientific parameters of a seizure! However it did not mean that there was not something happening!!
Well, at least it does seem like he's saying just because the EEG didn't show, that doesn't mean something isn't going on. They just don't know what. I can understand the fleeting thought of moving to B'ham for the UAB facilities, but boy would that be a bummer to be required to live in B'ham!!!
 
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