View Full Version : Help at last
08-13-2010, 09:27 AM
Hi, my husband has finaly seen the neurologist again for the 2nd time having dismissed us the first time thinking it was stress and psyhciatric problems, after having 4 months off work he returned only 3 weeks ago, but his symptoms have got worse. He has agreed to an eeg, he said it was to measure his brain waves? and a contrast MRI but he never said what that was for. My husband has a babinski reflex fascuclations,muscle loss slurred speech clumsiness tripping etc but the worst is the personality change, at my step fathers funeral on wednesday when we came out of the church he went to urinate round the side of the church much to the horror of my mum and the funeral ushers? Our GP thinks he has some sort of progressive motor neuron disease, but the neurologist has said nothing just ordered the tests and given us a date to return in 8 weeks, My husband still thinks he is fit and well and constantly blames me saying i see things that are not there, what can i expect now, does any one know what the contrast MRI is looking for? and does anyone else have problems with reasoning and denial? Thanks Princessbeverley
08-13-2010, 10:17 AM
How are you?I am so glad to hear your update.An MRI with contrast is usually done to show more definition.The brain is often the later things they check.I thought he had already had a brain scan, because he seems to have had every other test.You know, a brain abnormality of any kind will cause and can cause about ANYTHING in your body(and your brain) to function improperly.They have some information on the brain but don't know a lot about the majority.(like 99%, except that it controls everything).It is the most complex organ.I hope your GP ordered it from an outpatient center.Mine cost $500, as opposed to up to $4000 in some hospitals, here in the US. That was the second test I insisted on having.MS will show up, sometimes but sometimes not at all a stroke(depending on when, kind,size,damage )could show up,dementia(some common forms, not all)will present as atrophic,ALS will not present(although I read one journal that said it does in the very late stages),lesions and tumors present. A lot of things can show up.Sometimes a neuroradiologist can only report what he sees and can consider what it might be by the area it's found and what that area it's found in controls.
PM me when you have a chance to breathe.
08-14-2010, 07:38 AM
Hi, charlotte thanks for your message, yes he did have a ct brain scan in feb which was all ok but now they want this contrast MRI, his blood tests are ok but is due to have tham done again in about 4 weeks. here in England we do not pay for our medical needs so the tests are free, paid by our NHS, but for this we contribute all our working lifes whether we need it or not. So we do not have the worry or expense. My husband does have some private medical insurance but has never used it, but then again he thinks there is nothing wrong with him as far as he is concerned its me i'm mad! I just hope we get to the bottom of this now as it is so stressful. He is no longer the man i married its like living with someone else. Please god give me the strength to get him sorted out, all our freinds are worried, and the family are all supportive so i just manage day to day wondering whats coming next. I get my cardiac result 7 sept so hopefully thats ok. He seems more agitated and argumentative than before so i've learnt to say yes and switch off. Have not booked our holiday abroad as am unsure of how he would behave, but i am having a break with my son aged 11, we are going to Walsingham in Norfolk, its the English equivelant of Lourdes.Thank you for your concern will try to let you know whats happening, May i ask why you are on this site? Many thanks Princessbeverley x
08-15-2010, 05:47 AM
Princess Bev, your husband's behavior sounds very much like FTD. Look up/search ALS with FTD. ENJOY your holiday time!
08-16-2010, 11:39 AM
I was falling frequently for a year, broke my hand mid 2009,noticed slight gait changes.I wanted to relate everything that was happening to a MVA I was in 3 years ago when I found I couldn't dance anymore.In October, I fell hard and broke my once perfect nose.I started limping then.I went to a chiropracter to order an MRI of the S1 area of my spine.While she was examining me she said,"you need to see a neurologist".I looked down and saw a differential in the circumference of my left leg.I also found I couldn't walk on my toes without that left heel dropping(foot drop).More people drop at their toes so I definitely was not a classic case.My MRI came back, was poor quality and the written report said I had a ruptured disc.After 5-6 more Docs telling me they couldn't do anything about it(none were able to read scans)and three rounds of PT, I went to a neuro that found active and chronic denervation(fibs and psw's) by exam and EMG/ncs.She then wanted me to have a Mylegram/catscan.I went to a neurosurgeon to order it(complaining mostly of weakness from exhaustive stress), and evaluate me further.ALS was never on my mind.After the mylegram, my mind changed. I had no nerves compressed or obstructed in anyway.No disc problems.This was March. Nothing was making any sense to me. I realized, still limping,atrophying,foot dropping, fibrillating that serious was light terminology.The neurosurgeon, who was highly trained in neuromuscular disease before he became a spinal/brain surgeon went over my vast collection of scans,bloodwork, evaluations,tests, etc. He showed me how to read all my scans and I realized the dx of ruptured disc was out of the picture.He told me "your problem has nothing to do with the car wreck or your falls.You have a nerve problem."He then referred me to a Doc at the ALS clinic.I had spent close to 20k in 5 months to be miserably led from Doc to Doc to Doc to PT to PT to test to test to test.(all because that first incorrect,poorly written interpretation of the MRI)I thought I should be having some fun.I am an 18 year cancer survivor(dx very young) that didn't want any similar repeat preformances, but seemed to be getting one nevertheless.I was a hospice RN till December, when I retired because of my disabilities, so death has never been a fear.It's the "dying before the death" that I spent years helping people have some comfort in that I detest.(suffering) Death itself is the easiest part of life,and life is but a twinkle of your eye.
Why am I here? I guess God sent me here.
My latest reports and exams show active and chronic denervation, fascics,(pretty much confined to one(two ALS defined) region.The neurologist's report says "No evidence of WIDESPREAD motor neuron disease".I would prefer he leave out the widespread.But he's as perplexed as all the other Docs were.I lost my H-reflex where before it was prolonged.Where my calcaneous is paralyzed(the heel that drops)there is an absence
of my ankle jerk reflex.I've had three EMG's with three differing conclusions,from three neuros.I am playing a waiting game now.No more Docs for at least 6 months to a year.Last dx S1 nerve root dysfunction(not fixable)
Why am I here? I love my friends and this Forum.I have top-notch truly special friends.
If I could, I would eliminate all their suffering.They eliminate mine by just being there.
Everyone wants their questions answered.Sometimes that is not possible.I hope I answered you,it took way too long(but maybe others were wondering,too).I hope you get all the rest of your questions answered, too.Indigosed seems to have had an epiphany, in regards to your husband's medical problems.Go Indigosed!Stay Close, Princess
08-17-2010, 08:18 AM
Charolettecordray, Please explain your statement,
"Everyone wants their questions answered.Sometimes that is not possible.I hope I answered you,it took way too long(but maybe others were wondering,too).I hope you get all the rest of your questions answered, too.Indigosed seems to have had an epiphany, in regards to your husband's medical problems.Go Indigosed!Stay Close, Princess"
08-17-2010, 08:19 PM
What exactly do you not understand?I meant exactly what I said.Are you offended by something?
08-18-2010, 11:10 AM
Keep us informed about your cardiac results on the 7'th, and how your husband's tests
go.I'm so glad you are getting help now.
12-03-2010, 09:12 AM
hello charlotte corday and indignosid, have not been on here for a while, just thought i would give you an update.
My 11 year old boy is now in high school and has a full time TA, so is doing quite well, his diabetes seem to be in check. My Lupus is been managed with the anti malarials, but am waiting for an echocardigram as they have found some problems with my eeg, atrial fibrillation and sinus node tachycardia, so have started on the beta blockers. good news is i am going to tennerife on the 17th of december with my husband and son to chill out. As far as my husband is concerned i have had a terrible time with him and on your advice indignosid i did some checking into FTD. The neuro discharged my husband as his eeg and MRI were normal, i had given him a list of the problems i was having with him and he just replied that he had conflicting stories and as he could not find anything wrong with him was happy to let him go.....i asked him about FTD and he said as there was no atrophy he said he did not have it as it would have shown up. WRONG!!!!!!! My husband has had lots of problems in the past few months ranging from sleep walking still kicking and twitching in bed, agitation, he tells lies about everything, drinks excessively smokes 60 cigs a day, still drops things breaks things. he has had a total personality change no longer the loving husband he was. he is disinhibited, rude, has bowel problems hygenie issues plus a multitude of other problems which has resulted him getting a final written warning from work due to him been unable to see reason or any of his deficits. work has supported me they have had the works doctor to examine him who have stopped him from working. he could see the change in him from the last time he saw him in June. My Gp is refering him to the neuroscience department in Leeds who specialize in young onset dementia.The works doc has told my husband that without a full neuro assessment he will not allow him to work. my husband is agitated still thinks there is nothing wrong with him and wants to sue the doctor for loss of earnings. So having been told it was a marital problem by his Gp stress and depression or Pshychiatric by the neurologist it has been my gp that has listened to me and hopefully we will now find out what is wrong with him. I have had 18 months of hell, my family wanted me to throw him out , he has lied to our friends about me and they thought i was been cruel to him, and now we are on another path. I got in touch with the FTD forums and to my amazement everything just fitted they understood, i have kept notes on his behaviors and will be keeping in touch with the doctors to get this sorted out. my husband has swore at me in the doctors, neurologists, denied everything for the past 2 years but now he cannot deny his problems at work so thankfully this reinforces what i have been saying. Life has been a struggle my gp said it was either me that was mad or him, so i booked some counselling. I know its not me! but getting him to admit there is anything wrong is like getting blood out of a stone. heres hoping we have got things moving, thanks for everything love Princessbeverley
Beverly, you are not alone! My husband has had a major personality change, too. So have alot of the PALS around here. I think it goes with the territory - to an extreme when FTD is involved. My thoughts are with you.
12-04-2010, 04:29 AM
thank you missy for your reply
we visited the doctor yesterday and he said he will be contacting the neurologist again as he agrees that my husband still has problems in many different areas, this neuro is the one who dismissed us, He thought my husbands problems were Phyciatric or marital, he just does not listen or take on board what i wrote about my husbands behaviour. he refused to see us when the works doctor recommended an assesment, and only saw us again after my gp could see the changes in my husband. He still thinks there is nothing neurologically wrong with my husband. all he did on our last appointment was get him to tap his fingers and then tap his foot. he asked my husband questions about himself, my husband either denied or lied about everything. just because the mri and eeg was normal, that was it. what does my husband have to do for him to take notice? I will wait now and see who or where we go next but in the meantime he is at home all day agitated thinking he should be back at work as there is nothing wrong with him. Wonder what he will be breaking today?? it drives me mad. The gp has ordered an array of blood tests for next week,. Thanks for listening Bubblies