demylation of the brain

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lexilani
New Member


Date Joined Jun 2008
Total Posts : 3
   Posted 6/6/2008 12:42 PM (GMT -7)   
Hello All,
I am new to this forum but was very happy to find it. In 2005 I had an MRI Scan of my eyes because of Graves Disease. The eye specialist told me that the radiologist found demylation of the brain and that I needed to see a Neurologist right away because that means I have MS. Due to all the other medical issues I had during that time I really couldn't afford to see another specialist then.

I did see one a year later and he did another MRI. He told me that he couldn't confirm I have MS with that MRI because although the demylation was still there it did not get worse. At this time I was falling down quite a bit, my left ankle just didn't seem to support my weight all the time. I had problems with balance and problems with numbing in my arms and also I would lost the sight in my right eye. The sight problem could be due to Graves Disease.

Anyway the doctor did not offer any suggestions about any of the problems I was having after he saw the new MRI. He told me that I would have to get regular MRI's until they showed the demylation was getting worse. Then he told me that I could get a spinal also. But even that wouldn't say for sure. I was sort of depressed about this visit because I was now going to owe a lot of money seeing this specialist and went home with no diagnosis and no help at all about how to handle my problems other than to get regular MRI's which I really can't afford.

I ended up telling him that when I could no longer stand the problems I was having I would make another appointment. I really didn't feel like he had any interest in helping me once he saw the second MRI was basically the same as the first one.

Here it is 2008 and I'm having terrible muscle pain, at times I can't hold the weight of one dish, I can't grip a pen to write. I have strange sensation in my back along the spine in the upper shoulder area. Sometimes I can't use the keyboard or mouse on the computer. I find I have the most pain and problem when I am doing something list curling my hair or painting the house or taking care of my veg. garden. There are more things happening but really just too many to list.

I want to see another Neurologist but I fear that unless the MRI shows more demylation that I will again come away with no treatment nor diagnosis nor help for the pain.

For the people that have seen Neurologists, is this typical of how the visits go? If they can't say for sure that you have MS...did they send you on your way without any help or suggestions. Did you have to wait for more brain damage to show up before they would help you? I am really getting so depressed because of the constant pain and not being able to do day to day things.

My primary care physician keeps giving me different arthritis meds to try to stop the pain. He said he doesn't believe in MS nor fibromyalgia. And he refuses to give any patients narcotic pain meds because he feels that patients lie about the pain just to get drugs. None of the arthritis meds help with the muscle pain nor help me be able to move my arms. So it's like the only thing left is to see the Neurologist again.

So can some of you tell me how it was dealing with your neurologist please?

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 6/6/2008 1:54 PM (GMT -7)   
Hey Lexilani

Let me just say...wow. What a huge hassle u seem to have had and are still having. I guess the first thing i'd say is why doesn't u'r doc believe in ms??? This disease has been around for years wreaking havoc on people for such a long time...and COMPLETELY accepted by mainstream med as a KNOWN disease. How can he say that he doesn't believe in a disease of this magnitude, yet treat u with numerous meds for pain in arthritis even when he sees they are not working for u? How can he continue to keep 'trying' meds that clearly are not providing u relief...yet say with good and clear conscience that he doesn't believe in ms??? Wow. I guess that answers why u'r pcp hasn't stepped in to get u to a doc and services to aid in u'r med care.

Neurologists are usually great docs, but they can only go so far. They DO quite heavily rely on test results to dx ms just because ms is notoriously hard to dx. It can seem to be so many other things...mimic other diseases...so it's really more of a diagnosis of elimination. The doc will work/test to eliminate every other possibilty THEN if he's left with a pic of ms he will dx ms. If not...if u still don't have enuf signs or symptoms that indicate ms...even if nothing else is dx'd...u may not be dx'd with ms either. I know that's very very frustrating, but that is really the way it's done for all of us. Many here have been in limbo...not knowing what is wrong...for years. Many who do know went thru long periods of limbo before getting their dx.

As for the cost of the tests and doc's...well u'r right. It's very expensive, but it simply has to be done if u'r going to get an answer. I'm not sure i can offer any ideas on how to proceed without more docs and tests. There is no doc who is going to dx ms without being certain of his/her dx's. Most docs will take the wait and watch stance with the situation u'r in and that sounds like what u'r doc (neuro) is doing. Unfortunately that's maybe all u CAN do. U'r doc (pcp or neuro) can certainly prescribe meds for the symptoms tho and if he's not willing to do that then u should be asking him why. It doesn't have to be a matter of his belief in ms. This is a matter of u being in pain or having probs with functioning in daily life. If after u'v asked him for help and he says no or has not been able to give u adequate relief, maybe u should consider a different pcp. Certainly one who believes in ms!
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3546
   Posted 6/6/2008 3:10 PM (GMT -7)   
MS is a well accepted disease in the medical world.  I am shocked that a doctor would say he didn't believe it exists.  You need to see another doctor if you can.  I know this is expensive but you need to call your insurance and see what you coverage you have as far as these tests go.  I am sorry you are having such a rough time getting help with all this.

Gretchen       co-moderator MS board       diagnosed with MS July 2006


lexilani
New Member


Date Joined Jun 2008
Total Posts : 3
   Posted 6/7/2008 9:08 AM (GMT -7)   
Thank You Both,
For your advice and your replies. I am in the process of finding another PCP. After my last visit with him this past Thursday I knew I couldn't go back to him. There were little things the past years that if I really thought about it would have made it clear that he really wasn't interested in treating any of my problems. At one point he even told me that I should have more sex with my husband to improve my memory problems. (He has no idea what our sex life is like btw). I live in Paw Paw WV and it very rural here on the mountain. The nearest town is about an hour away. This doctor is in only 20 mins. away which is why I started seeing him. Driving can be very painful at times especially since both cars have stick shifts.

My PCP has been telling me for 2 years to use ibuprofin and giving me prescriptions for motrin and naperson for the past two years for the pain. It's only been in the last six months that he's had me on the different arthritis meds and I think he only did that to shut me up.

As for the Neurologist...I'm kinda of at the point where I don't care if they can put a name to it, I just want some relief for the pain. Having been so active in the past...I'm the one who takes care of all the house maintenance, painting, lawn, repairs, etc. I have a very large veg. garden and can every year and a small orchard to take care of and it's getting almost impossible to do.

And even though it will make us really tight money wise I am willing to try another neurologist but I'm worried that if he can't diagnose it that he won't treat the symptoms that I am having. The previous doc just sent me on my way when he couldn't diagnose it.

So if I go back to a neurologist and he can't say what it is. Does that mean he won't treat the symptoms? Does that mean that your PCP is the one to treat the symptoms?

Rhondab....my PCP said he doesn't believe in anything he can't see. He thinks all his patients are liars about their pain and he also said he doesn't care about their pain. He said he was burned so many times in the past that he's jaded about people and their pain and unfortunately his patients now are dealing with that. He said that right to my face when I asked him if he doesn't believe that I am in this pain. I got up to leave after that and he said that unless I stayed to finish the appt. he would not refer me to a neurologist. I intend to report him to the Board of Directors of the clinic as soon as I get my records transfer to another doctor.
He also said that he does not believe in fibromyalgia....I don't know to much about that illness. His nurse not only asked me to report him, she also gave me the address to write to. She said that the staff has made complaints but the patients have to do it before action is taken. This doctor is very young so I don't understand how he can be so cold and uncaring about his patients.

Gretchen and Rhonda again thank you both for taking the time to respond and to give me advice. I can see from this board that I'm not alone in this and that helps. When it all first started I thought I was going crazy or turning into a hypochondriac.

serenityartist
New Member


Date Joined Nov 2008
Total Posts : 1
   Posted 11/2/2008 2:30 PM (GMT -7)   

Dear Friend,

Your story is so familiar to me.  I went to Urgent Care one day with a severe migraine and numbness in my hand and foot on the left side of my body.  The numness is what brought me there as it lasted more than 12 hours and worried me.  I get headaches often.  They did a CT Scan and an MRI to be sure I didn't have a stroke but they found 8 plus spots in my brain and said that I should see a neurologist.  I did.  He said that he didn't think it was anything.  Nice.  I still had the numbness weeks after the Urgent Care visit.  I told him that I wish he would compare my old MRI with the new one.  He finally did and I went back to him.  Even with the big changes he felt it was not MS. and he reluctantly did a spinal tap and some nerve testing.  The spinal tap did not indicate MS but that isn't always right.  You can still have MS with a negative tap.  He decided that I have fibromyalgia.  I have suffered terrible boughts of pain and muscle weakness and spazems in the past but after three long years of terrible continual pain it just pretty much went away one day.  Then this came on.  Now I have weakness and numbness and severe headaches and he is blowing it off.  He put me on Lyrica and so far all it has done is make me dizzy but I still have the symptoms.  I have an on line connection to our clinic and two weeks ago my list of medical problems included Demylation disease.  Last week that disappeared from my chart info.  I don't know who took it off or why but apparently someone decided I no longer have it.  The neurologist said that even though my MRI read that this was a problem, he felt it was nothing.  SO I now am on strong medication that is not helping me and as far as this guy is concerned I have nothing to worry about.  I guess that is his take on it.  He is not living in my body.  My biggest problem is that there is only one other neurologist I can see due to my insurance and that one is a pal and co-worker of this one.  So I am not able to move forward and find out if I really do have demylation disease or not.  My MRI shows a big change since the last one and my symptoms are there but you are literally stuck with a doctor who does not believe in MS or Demylation Disease.  SO that is my story.  I guess I will have to lose my eye sight or not be able to walk before I can get some help with this.  Sorry I couldn't help you out.  I really don't know how to talk to a neurologist.  I don't know if many of them believe anything without clear cut lab evidence.  Good luck to you.

 


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3546
   Posted 11/2/2008 3:26 PM (GMT -7)   
serenityartist,
 
I would strongly recommend a second opinion.  I know you said you have very limiting insurance.  Is there no way to go to someone not associated to your current neuro?  I have not heard of insurance that only allows two neurologists.  If I were you, I would do what it takes to get that second opinion. 
 
Some drive hours to do to a good neuro.  Some save and pay cash as well.  Do what you can and let us know how are you doing?
 
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 11/3/2008 6:30 AM (GMT -7)   
Hey Serenityartist

Welcome to the board. I second what Gretchen has said...u do need to persue that second opinion. Sometimes u can petition u'r insurance company to approve an out of network doctor for u'r needs. This may well be a case where that is acceptable. U are paying for this insurance and many times u'r provider will take u'r care concerns into account when deciding these things. It can't hurt to try! Decide on the doc u'd like to see and get their information together, then hand it all over to u'r provider with u'r request. Be persistent. This is important and could lead u to the answers u are looking for. Take care and let us know how u'r doing.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*

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