Short answer - Fact - but not "black and white" fact. I've been reading intensively on this topic this morning. I'll try to summarize what I have found out, but today is a brain fog day. I hope I'll give you some info and a little ammo.
As we age we tend to get "age spots", if you will, in the white matter of the brain. These show up mostly in the peri-ventricular areas of the brain and, to a lesser extent, in the areas right next to the cortex (the outer layer). The causes of this are MANY. I repeat MANY, and one factor does NOT completely account for them. Also, if a person has one or more risk factors for getting these lesions, no good doctor should write off lesions if the person also has neurologic abnormalities by history and/or physical exam!
The white matter "aging" lesions are felt to increase in the mid-forties and more rapidly beyond that and contribute to the mental decline that many people begin to suffer by their 60"s. The factors that contribute to them are the factors often connected to cardiovascular risk, in fact these lesions are believed to be the result of small, microvascular damage. These risk factors are age, high blood pressure, and smoking. In the best article, smoking was considered a definite, but "weak" factor in causing these abnormalities. The problem with this study is that it is 9 years old.
Other researchers have included female gender, migraines, diabetes, higher lipid abnormalities, and obesity as factors in causing increased numbers of these lesions.
I couldn't access the most current information. It sounds to me like your doctor is rabid about smoking and will use any info at his disposal to push this point home. I recognize the behavior, because I was also this way about parents smoking around their children. However, it would be irresponsible to say, "You have lesions and quite a profound history of neurological problems, but because you smoke I won't entertain any other real diagnoses."
Your MRI report did say "slight" white matter disease. It will be a tough sell.
His PRE-diction that any white matter lesions that are seen will be because you smoke was a way to tell you that his mind was made up. You will likely get the expected lecture. I hope that is all it is, and that he addresses lesions AND symptoms AND findings. Otherwise he is too narrowminded to look beyond the role that the cigarettes may play. The problem is that he has some back up data on his side - not enough for the really firm conviction that mere smoking can cause years of neurological symptoms - but enough to feed a fanatic.
The other factor that is on your side is that you are not elderly. Most of the studies linking smoking (and other things) to white matter disease were done in people over 60. Age is the biggest determinate, followed by UNtreated high blood pressure.
The VAST, HUGE majority of people of your age who smoke do not have the neurological problems you have. You might ask him about where the information is that shows that smokers can show signs of a degenerative neurological illness caused only by their smoking. For the most part the studies that show these lesions (and link them partially to smoking) either found that the lesions were assymptomatic (had no symptoms) or they were in studies of people who had already had strokes.
If you can retain your composure, I would say that smoking does play a small role in "increasing" the number of lesions, but has not been shown to cause full-blown neurologic disease except in the studies looking at people who have had strokes. Is there someone who could go to the visit with you to be a voice of reason?
I'm 39 and never had a stroke. Voice of reason would be my husband, maybe I can get him to go with me. My mind is a little out of wack too right now.....let me see if I understand what your saying.
So you can correct me if I am wrong....lol
White matter disease in a 39yr old woman would not be due to smoking? Would it be due to regular aging?
Also, when you said "Your MRI report did say "slight" white matter disease. It will be a tough sell".
What exactly do you mean....the Dr trying to sell me the "its from smoking?" or me trying to convince the Dr something is out of wack with me and not the smoking?
Im lost........when the Nurse says, "Your MRI is Normal" then I read " slight white matter disease" it doesn't add up to me.
I appreciate you taking all this time to help ALL of us on this forum.
Lisa, there is no black and white, perfect comeback for this guy. All in all you're very young to be told that all the white matter findings are from smoking and too young to be told it's "all" aging. The studies I found were mostly of the over 60 group. There IS info out there that smoking is bad for the vessel health of the brain. That is fact. I didn't find good evidence that, at 39 smoking and no other sign of cardiovascular damage, can explain all the lesions seen on someone's MRI, but it can be legitimately argued that smoking plays a role.
Smoking is only a factor, and not the biggest one, in causing white matter changes. If the findings are truly subtle, you will be at a stand off with the doctor trying to convince him to look beyond the smoking.
The reading of "normal" is an interpretation of all the factors and the findings usually found in this age group. I agree, you should have been told "slight, nonspecific indications of white matter disease." The doc's feeling may well be that this is "normal." I disagree, that a doctor can rationally overlook even small abnormalities in the face of neurological problems. It happened to me, and I suffered because of it. But, I can't give you a blanket statement that a 39 year old woman who smokes would not have any damage in the brain or lesions on MRI caused by the smoking. Nor can I say that a 39 year old woman could not show one of these white matter "age" lesions.
However, it would be irresponsible for the doctor to say, "You have lesions and quite a profound history of neurological problems, but because you smoke I won't entertain any other real diagnoses."
In retrospect, I probably shouldn't have tried to answer this. q
"In retrospect, I probably shouldn't have tried to answer this" I'm sorry, I didn't mean to put you on the spot.
I'm just confused, normally I would just allow the Dr to explain his findings. But something seems off to me.
If smoking will cause me to have "white matter disease" ok, then I will accept that. I have a horrible memory, lose my train of thought, and what I want to say never comes out the way it is in my head. Things can be said to me and when I try to repeat back what someone just told me, well then it sounds like I'm either not listening, or I'm twisting their words around. And I know Im paying close attention (basically because I know I have this memory problem), and I NEVER mean to twist other peoples words around.
Its to the point that I no longer want to have many conversations due to this problem.
The Dr that did my EMG, just in casual talk cause the weather was really hot and humid, the subject of me getting sick during those times caused a red flag in his eyes ..... I said I get dizzy/lightheaded/nauseated/limbs feel weak/feeling of being drained. I never mentioned this to my Neuro because I just figured that was me in the heat, NOT a symptom. The Dr says that sounds very much like MS. The only thing that doesn't happen is that I don't get tingles or numbness during this period.
If the Dr says its my smoking should I accept that reason OR is it time for a second opinion with a MS specialist?
Well besides MS, I do not know what other field to look into..... 10yrs ago when this all happened and I told DH that I thought I had MS, he read up on it and said I can understand why you would think that because you have almost everything MS related but I'm pretty sure your Dr is right, its your Anxiety Disorder.
Sadly Im just someone with symptoms. Im no Dr, I don't know where to go or look. Maybe MS is not my problem, maybe it is all Anxiety/smoking.
Appearantly my MRI doesn't have much information. Its vague, so I know where the Neuro is going with this one. Its going to be a waste of my time even going, but I will and I'll leave with a DX of smoking and the cure is to stop.
I accepted the Anxiety Disorder DX 10yrs ago..........Im about to throw up my hands. I'm so depressed, I cannot put my family thru this any longer. I went to him for my dizziness, and I thought "maybe" I'll finally get a real reason I feel the way I do after 10 long years!!!!!!!!!
I'll just continue with my Xanax, I don't think my family or I can go thru yet another Dr and his visits and be pushed aside like I'm looking for something to be wrong with me.
Reading your post I hear the extreme discouragement sounds like you are boardering on hopelessness. I hope I am wrong, please let me know that I am!!
I may be overstepping boundries here but have you considered seeing a Neuropsychiatrist? I think he/she may be able to help not only with coping with lack of Dx but also with the anxiety. I have read in posts many pages back that this helped someone else who was being brushed off by docs.
I am worried about you--please hang in there and keep searching.
Im not going to do anything crazy.......the only thing I'm getting ready to do is stop going to the Drs and just deal with my problems like I have been for the past 10yrs. Ive tried to stay positive and focused, thinking this will get me to some sort of answers to why Im feeling this way.
My anxiety for the most part has been under control for 8yrs....I have bad days that is when I take my Xanax....I take maybe 3 pills a month if that! I'm becoming depressed....yes I feel hopeless!!!!!
I don't want Fibro but I have it and deal with it. I don't want MS, but IF that is my problem I'll deal with it. The point being I want to know what IS wrong with me, so I CAN deal with it.
Why is my memory so bad......when your DH or your kids think your not listening to them because you don't remember exactly what they said....it hurts ALL of us. IF there is a reason this is happening then I can explain it to them, Im NOT doing it on purpose .. its because of THIS. Right now I can tell them Im not doing it on purpose BUT I don't have a real answer as to why this happens.
So yes, I feel hopeless, not taken seriously. To me its like your on fire and your screaming HELP put out the flames and your surrounded by Firemen who see and hear your cry's but the just all look at you as the pass by!
I'm not giving up on life......I'm just in that hole where I feel no one will listen so just shut up already.
I can totally relate to the kids and DH getting upset at your seemingly not paying attention. It seems to be happening to me daily for the last couple of weeks. It gets better here and there. When the kids get upset I get frustrated with myself and say why aren't you paying attention. I have only recently come to the conclusion that perhaps this is a symptom and that it is not because I am not paying attention, my brain is not working right. Why it is not working right is the place that so many of us are at right now.
I am glad you are not giving up and I apologize if I have offended you in any way. This is where computers are not the greatest because they cannot communicate emotions. And certainly you have this forum to keep on screaming although we cannot provide concrete answers, we can and do listen. So until the docs who need to be listening and figuring out what is going do their jobs, we all hang out here supporting each other.
The neurologist I went to(idiot that he was)...told me the exact same thing. I've never smoked in my life, but in all fairness..I told him that I had grown up and live with heavy smokers. His reply "well, you would have had to have SMOKED to get the lesions"! I don't know, I suppose there is truth to it...but I wonder if second hand smoke can cause them as well? Once again, he was lacking in the "clarification" dept.
Ive been around smokers my entire life........come to think of it I don't know anyone that doesn't smoke! No one and I mean No on I know has problems like I do. Yes, I agree smoking is bad for you and your body. But I don't think my "white matter disease" is from my smoking!!!!!!! Or I would be surrounded by people that were just like me, and I would think well everyone else feels like this so I must be normal!
You have to first understand this guy, the moment he heard I was a smoker he wouldn't let up!
I have this problem with my hands and feet when it gets humid. They hurt/burn and I cannot make a fist.......his response was "Must be hard to hold that cig when your hands get like that"! This was just ONE of many off the wall comments he made about my smoking.
I hear he is one of the best in my area, but I don't trust him :(
I can relate to so much of what you've said. I've been dx'd with MS by my Internist (but I don't think it's official until the neuro says it).
I'm getting ready to see my 8th neuro!!! I wont go into a whole lot of detail ( you can go back a few pages and see my timeline).
I understand you wanting a diagnosis. I feel as if I becoming more and more disabled. It is scary. It is all coming together now like a puzzle. I have a piece from the urologist, neuropsychologist, ENT, etc...all documenting dysfunction in their field. Now I just need the neuro to put it all together.
I have been seeing a mental health therapist off and on for years. Mostly to help me deal with living with a chronic (especially undiagnosed chronic illness) illness. He has helped me tremendously as he has a son with a chronic illness so he gets it. You might try searching your area for a therapist who deals with the chronically ill.
Also, if you are having memory problems consider having neuropysch testing done. I believe that testing was the first (besides my abnormal MRI) that showed problems.
Your going on your 8th Neuro!!!!!!!! I will not go that far, I cannot mentally take it!
The Dr who gave me my EMG/Nerve test asked me why I didn't tell the Neuro how I get in sick in hot/humid weather, he says that is a big MS sx. I said well Ive been like this sooo long I just figured it was who I am and that it wasn't any symptom, I just get sick in the heat! He told me to TELL this Neuro when I see him.
I'm hoping he will give me a memory test........I watched the testing they give Football players after they have had a concusion on the news......OMG I would have FLUNKED!!!!!!!!! I could remember the first 4 things that came up on the screen after that I was DONE! To remember those 4 things I had to keep repeating them! I would have been Benched indefinately!
I do not know the results of my C/T spine yet, I will find out about them tomorrow.
I really don't know IF I have an abnormal MRI........Nurse says its Normal..........report states "white matter disease". I may send my records to an MS specialist.
I started homeschooling my children a few years ago.........my oldest went til grade 8 in school but they didn't care about correct grammer or spelling.......they had to be pulled! So Im teaching a 16yr old, 13 and 9 yr old. I have my hands full! I went on my journey this summer because I had some time to figure out what is going on with me after 10yrs. School is going back in session and they need me to be here to teach them to get them ready for this wonderful world!
Stay strong,it took me 14 different DRs,4 were neuro's to get a proper DX.
Drs today are to dismissive,especially to women(hope not to affend you gentleman) if theres not 20 lesions and 15 spinal lesions,I know i'm exaggerating,but its the truth.
The research on smoking and lesions are so out dated.
Be firm with this neuro,tell him you don't want to be dismissed,that you have 3 children depending on you.
You take the MRI report with you"WHITE MATTER DISEASE" isn't normal.That nurse should not have stated that.
This is why you should keep copies of your medical records.
Your children need you,they need you healthy!!!! Keep in mind it took Montel Williams 22 Drs to DX him(he has the money for the best DRs.)Terri garr 20 years for a DX.Don't give up,the right DR is out there!!!!
You lay every symptom on the line for this neuro,the heat ,the memory,the whole shootin shabang.Make him understand what you are feeling,be your own advocate.
I understand what you're saying... My mother was a smoker, and no matter WHAT she went into the dr for...the bottom line was her smoking! I watched her get pitched around so much with her health issues and ALLLL were blamed on the all mighty cigarrette! I do think physicians put an automatic label on you in regards to this and it always pissed me off! Rather than getting down to the problem, it's "because you smoke"!!
There's nothing worse than trying to get answers from someone that already has their mind made up....in this case he deserves a big kick in the *** to the curb!!! Again, I just think it's a load of **** that we literally have to FIGHT our way through the dr's office to get some action!
My entire family smokes..and you're 100% right...not ONE of them has the vertigo...the pain...the memory problems...etc. And my neuro as well tried to pinpoint the lesions to smoking! I gave him 2 visits....and moved on. I refuse to pay out any money to someone that arrogant and ignorant. I'm learing REAL quick that you have to be an aggressive force in your healthcare...or they just label you and shove you aside. It's not THEIR lives though, is it??
I wish you the very best and hope that you will continue in moving forward to get a diagnosis..even if it means going through a dozen lousy dr's to get the ONE that understands where you're coming from!
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