Confused- please advise

[fallinggirl]

I had an MRI on Friday- I was unable to have it with contrast, because as they entered it to me, I got sick.  I am evidently allergic to the stuff.... anyway, today I got a phone call from my primary doctor's nurse stating, "the MRI was a normal scan- there is a good bit of white matter on your brain, but it can be from a previous injury or your headaches.  The doctor said to get another MRI in 6 to 12 months."

I responded with, "No.  Please tell the doctor I can not continue this way!  I am exhausted by 2 p.m., I have tingling hands and feet, I can't concentrate, can't speak right, the list goes on, and I fall almost daily now."

Would it be right for me to seek a neuro on my own, if the doctor will not?  I am hoping she will get back to me with that in mind.  For further info, I had my first episode 9 years ago- three weeks of barely walking at all.  

[HVAC]

Good luck. I hope it goes well.

Alex

[fallinggirl]

As it turns out, I am scheduled to see a MS neurologist on Monday.  I am happy about that!  They have done the preliminaries of ruling out Lyme, B12 def., Vit. D, etc. etc.  

[Threewheelmobile]

Good for you to have stood your ground. They take it all too much in a stride and only you can feel what you are feeling. Have you tried to doing some meditation. It help and you can even within time help shrink the mass.
Go to someone to teach you how to meditate.

A neurosurgeon I take it you mean. I would do something quicker than wait for the doctors to get in gear.
Go seek a accupuncturist.

Good luck xx
Threewheelmobile

[HVAC]

Unfortunately Neurologist seldom work quickly. It is normal for them to watch things over time in six months to a year intervals. I saw 6 in two years and had 5 MRIs, evoked potential, lots of blood work and a Lumbar puncture before my diagnosis. There are many diseases which act like MS.

All neurologists are not MS Specialist and you may want to be referred to a MS Specialist. In our area an appointment is 8 months out because there are so few. There are less MS Specialists in general because it is hard field because it is hard to diagnose and caring for MS patients is hard. MS doctors do not get reimbursed as well as other doctors for their time. Most doctors are paid for procedures and MS Specialist do fewer.

MRIs are thousands of dollars and insurance companies do not like to pay for them so this is another reason doctors have to space them out.

In most place a doctor has to refer you to a Neurologist unless you have been diagnosed.

If you look at the help pages at the lower right you can see more information about diagnosing MS. Specifically the MCDonald Criteria which is bit complicated. Basically it is not MS in a Neurologist's mind until all other possibilities are ruled out and you meet his or her definition of the criteria. I met it right away and the doctors still would not diagnose me for two years. They would say I probably would be diagnosed with MS.

By all means if you are having trouble push for a diagnosis. See as many Neurologist as you want. If you think you are at a dead end move on. We know our bodies. Just leave emotions out of it that is a turn off to Neurologist. They are very rational. Just understand it may not come as quickly as you like because this is a complicated disease. Some on the forum are diagnosed with other things all together.

Symptom management is key until you get a diagnosis. If they can do anything to help symptoms push for that before a full diagnosis. I did not understand this and suffered needlessly because I was just thinking I would be diagnosed and then they would fix things.

My whole diagnosis process took 44 years which is way to long. I made myself pretty nuts worrying about it the last two years. I wish I had understood how Neurologist think back then. I thought they were just dismissing me and they were not. It is hard not to feel validated or like Doctors take you seriously.

I had the same problem with Cancer. It took for years for a diagnosis and I was in stage III. I am even living through this along with the MS. Unfortunately Doctors can't always figure everything out. they miss things. Sometimes the more Doctors and the more problems you have the harder it is to sort out.

First you need to find the best MS Specialist you can get to. You need to take your MRI and other tests and all your Doctors notes with you. The doctor should do a good history, look at the MRI and tests and Doctors notes and do a neurological exam with the reflex hammer and  following the finger and lights, and balance, pushing and pulling on your arms and legs, walking the hall etc. They tell more from what seems like a simple exam than they can tell from an MRI. They can see where the damage is in the brain or spinal cord or if there is none. Have them explain what they are looking for and what they find. I never asked and they did not tell me until I asked. Now I understood a lot more.

Alex