I have 2 different diagnosis

[Ruth28]

I have been ill with exreme fatigue and many other symptoms for over 10 years. At first I was diagnosed with Chronic Fatigue Syndrome.  I was diagnosed with mild MS on 12/07 and on 12/08 a second neurologist with just an MRI result told me I dont have MS because my brain lesions are small and I have only 3. Previous neurologist did also a spinal puncture test which came out abnormal suggesting MS. I do have symptoms of mild tremors in one side of my body , my cognitive abilities are getting pretty bad lately , I have days of confusion or foggy sensation, lots of symptoms of dizzy, stiffness in my legs , hips , neck and tingling in arms , head , legs etc...It gets pretty scary sometimes... I dont know what to believe as my doctors do not seem to know much about MS. The second neurologist told me that she doesnt know what I have and it felt as if she doesnt believe I have these symptoms, even when my brain showed some lesions. I was so happy when she said that ,but now I am not sure as I have real symptoms and no diagnosis. She left me in t he air and told me I dont need to see her anymore as she doesnt think I have MS.  My 2nd doctor was rude and cold as If I was a not useful guinea pig . Do people with few small brain lesions and an abnormal spinal puncture test could also have MS? I dont know what to do now as I have two doctors contradicting themselves. I like to know which hospital in USA is more knowledgeable on MS?

[meg321]

I just dont get it, why do people get treated so rudely when they are already so damn sick?  Its just bad, i do wish my cardiologist were into MS, he is great to me but he cant do much, he just tells me to stop crying and become proactive, as i once was.  Whatever is going on heres just rips you apart, tales your self esteem, self confidence, and much more.

I am ranting but it really makes me angry...we just have to stand up for ouselves.  I am talking as if all of us are like this because I have let it do it to me..but I am sure some of us are in this category.

but I am trying, meg

[Ruth28]

I do thank you for your support. I am getting the feeling this is something we as patients need to get educated on and try our best to find the right doctor.  It takes me time to get to analize things now as I am a little foggy when under stress. I realized that the second doctor did not pay attention to my medical history and to the results of my spinal tap done by previous doctor. She rules out MS without doing a complete assesment since she only based her assumption in an MRI that showed only 3 small lessions. To her the lesions do not represent MS. I realizednow that an MS diagnosis not only depends on an MRI but in a complete assesment which includes spinal tap results, visual evoke response test and the review of patient medical history. I do think this 2nd doctor had some bias as she treated me very rude at the end. She left me thinking I have no MS and told me not to see her even when she doesnt know what I have.

[Quixotic1]

Hi, there and welcome to our forum.  You have certainly landed in a place with one of our most frequent topics.  What to do when doctor disagree over a diagnosis.  First you will find a huge amount of company on this topic.  It is so unnerving to have a diagnosis and then have someone take it away.

In truth, it can be very difficult to diagnose MS.  It is a matter of collecting all of the information that is available and putting together the patterns.  The docs must first look at your symptoms and see if they are suggestive of the things seen in MS.  This you have with the tremors, dizziness, stiffness and tingling.  But, it also matter how these symptoms have appeared.  Have they come in waves or attacks?  Have they ever gotten better and for how long?  Or did they appear and just keep getting worse?  Questions like that.

Then the neurologist needs to do a very thorough neuro exam.  Head to toe, checking literally many dozens of things.  An exam like this takes half and hour or more.  Do you have abnormalities on your exam?  What are your reflexes like?

Then they are ready to look at the MRI.  The neurologist should read the MRI himself and not just rely on the report.  Was it a proper MRI study?  What was the strength of the MRI machine?  Was it done using the MRI Protocol which was designed to optimize the visibility of any lesions.

Can a perosn with MS have only three lesions visible on the MRI?  Yes, a small number of people with MS have an apparently "normal" MRI.  But we have to understand that all people with MS do have multiple sites of damage in their brains and/or spinal cords.  Sometimes those areas of damage are too small to be seen on MRI.

I was diagnosed with MS with just one lesion in my brain and none in my spine.  A can on a better machine, though revealed that I actually had 6 visible lesions in my spine.

I would be very interested to know what the abnormalities were on your spinal tap.  Can you get those results?

Any doctor who makes you feel less about yourself or what you know is happening with your body need to be run from as fast as your weak, stiff little legs will carry you, lol.  No one needs to be demeaned, dismissed or humiliated.  I agree.  You DO NOT need to see her any more.  However, you do need to see someone to get a third opinion, or go back to the first neurologist.

Others will jump in here with advice and opinions, but you are not in an unusual position.

Now, could you have both CFS and MS?

I hope you will answer some of the questions about how your symptoms have shown up.  Don't worry about writing a long post.  We all do that and the longer, ther more information.  Also, try to get the results from your LP and we can see what that showed.

I'm glad you found us,

Quix

[Quixotic1]

Terry asks a great question and one I, myself, don't understand.  How can a doctor take away a diagnosis and not be motivated to find the right one?  I'm sure we see a skewed population here on this forum, but each person that has had their diagnosis of MS taken away, has suffered more only to have the diagnosis reinstated - but then they have missed all of that time when they could have been on a DMD.

Quix

[saveone]

Welcome.  Yes, some ppl who have MS have clean MRIs, which you don't, same goes for the LP.  You can gain a lot of information by going to the top of the page on the right hand side and clicking the icon for health pages.

Now this is something I don't understand and I have heard it before on the forum...how can you have a DX and then a dr take it away without telling you why or what you do have.  I would find that very frustrating.  That is just my opinion,

I am sure ppl more knowledgeable than me will be along to chat and offer more information.

This is a great bunch of ppl.  Hang around and get to know us.  You are welcome to ask questions, none are considered silly, rant, cry or whatever you need.  You have found the right place.

Again welcome

terry