Looking For answers

[UnsureMS]

My story is long but I am tired of telling it. The most important part of whatever should know is that I just want answers! My sxs are as follows and came up in this order for the most part...a large cyst pops up behind right ear, my left leg begins to tingle and feel like it is asleep, then my left arm and hand do it as well, next my left side of my face....after that I begin to get scared and that is when the dizzy spells came on, I had to get help walking to the restroom to keep from falling down...next my short term memory was affected and I would get these sharp pains in my head, I have had ringing in my ears and pressure in my right ear, I have stomach issues too.

All these are hard to handle but the hardest part is that I feel off more often then not. I can't explain my off feeling but I know I am not myself. I even have had a shaky feeling come over me. This has been going on 8 yrs, and the testing has showed I have an autoimmune disorder, and a spot on the right side of my brain. I have been told it could be autoimmune disorder such as Fibromalagia but that was quickly taken off the table I have been told I could have MS but don't meet criteria fully. I am tired please someone give me suggestions...

Could this be MS...what questions should I be asking...how did others get there answers...

[kwarendorf]

If you are not happy with you neuro you should find a new one.

One thing that may be in play is the waiting game associated with MS DX.

Your doc maybe waiting for some time period before having another MRI done. This would show new lesions, if they exist, and move closer to an MS DX. Other test results, like LP, are not likely to change so there is no reason to repeat them.

Kyle

[HVAC]

Treating symptoms will not keep you from a diagnosis. I made that mistake and suffered needlessly. If your doctor will not address symptoms get a new one. Most of my symptoms are pain so my neurologist sent me to a pain clinic. I have both nerve pain and muscle spasms. I thought I was jsut out of shape. I swim an hour a day.

Some day they will have a blood test but that day is not today.

Alex

[UnsureMS]

Thanks there was lots of good advise their for anyone looking for answers and tired of the run around. The process doesn't frustrate me it is the fact that they stopped testing me and started just treating each sxs. This isn't allowing me to get closer to a dxs but making me feel more worn out.

[BOK2Bjan]

Hi - this brings up an important point which I've addressed many times before, but it seems very appropriate here.  The presence of symptoms aren't needed for the diagnosis of MS.  The history of the presence of symptoms is helpful in the diagnostic process though.  That's why it's helpful to keep a journal of symptoms (those you're concerned about and which are significant), when they happen, how long they last, their intensity, type, etc.  The diagnosis of MS is one which is made over time.  The lesions of the white matter have to be shown to have appeared in more than one place, at more than one time - of the type and location indicative of MS.

The doctor knowing that you also have a history of symptoms (typical of MS) which have occurred over time - of more than one type perhaps, in more than one location, of a certain minimum duration at more than one time with a minimum of time between their occurance - is very helpful in their diagnostic work up.  One lesion, or one symptom at one time, or one abnormal finding can never allow a physician to make the diagnosis of MS.  It's one of the characteristics of the disease -  that it happens over time.  If you currently have no symptoms, yet an MRI shows that you have more than one lesion typical of MS, in more than one location, typical of MS - that goes into the + collumn of an MS diagnosis.  If you have a spinal tap which also shows certain protein bands - results typical of MS - that goes into the + criteria list as well.  Add to that your own history of symptoms on more than one occasion which are typical of MS - this also goes into the criteria list.  There are other diseases which they must rule out with other tests to complete the diagnosis, but having symptoms at that time doesn't matter.

It is a frustrating process for many, due to the fact that it isn't a diagnosis that can be made the first time you have a symptom, or the first time you have an abnormal result on a test.  I was unlucky enough to find out I had MS before I had any idea it was even a possibility - but that's because all of my symptoms and abnormalities were being blamed on another one of many autoimmune diseases I also have - Systemic Sclerosis in this case.  Not seeing a neurologist who specializes in the disease, and not suspecting it myself, made finding it a long process.  But, it didn't matter, as treatment didn't help slow down its progression.  It did answer some questions and curiosities, however.  By the time I was diagnosed, I'd had it for years.

I would suggest that you keep a journal, however, of not only symptoms, but tests, their results, and copies of all labs and test results as well.  When you see new doctors, it's so much easier to have all your results in one place.  You can make your own copies and take them with you to appointments, along with your own symptom history.  It can help avoid redundancy and help the doctor better know what test might be needed or need to be repeated - to give you answers.

Get a binder and each time you have a test, lab work, or exam, ask for a release form, sign it, and get the results sent to you, as well as the ordering physician.  That way, you can begin to create your own medical history record.  I have a rather fat complete one, which is divided into body systems, and includes films, CDs, actual test results, as well as write ups by the physicians.  I also have letters written by different doctors, and never have to worry about lost records or delays in getting copies of needed records.

Hope this helps people.  It is something that you can't let take over your life, but it can help you keep organized and have a sense of control.  Focus on the good times, the healthy times you have, but keep track of your medical condition - no one else will be as interested, or as diligent in keeping things straight.

[kwarendorf]

Hi UMS -

Yes it is smart to address symptoms while pursuing a diagnosis. With MS dealing with the inflammation that causes symptoms will not stand in the way of getting a diagnosis. Objective evidence of MS will still be present even after symptoms have subsided.

I was given IV steroids weeks before I was diagnosed.

Kyle

[UnsureMS]

Thanks I will...I have another question for anyone that may respond. I was on meds for restless leg syndrom but I don't like being the meds cause I can't tell when all my sxs are acting up at the same time, due to the meds controlling the restless leg. Is it smart to have a sxs under control while you are trying to get a dxs???

[slaytheday]

Hello.

  Mostly I want to ask that you please stay with us and get back to us on what you find out.   We care and there are just too dang many people trying to stay afloat i boats similar to yours.

Blessings,

  Melinda

[UnsureMS]

See that is just it they have stopped testing. I need answers, I am looking to start over.

[HVAC]

How is your neurological exam? That is reflexes and such. If you only have one lesion it would be hard to be diagnosed with MS. The MRI has to be MS protocol with at least three lesions in the area of MS. They also may do a Lumbar puncture but those can be negative. I had to have several positive for MS MRIs, five, abnormal evoked potential, an abnormal lumbar puncture, abnormal neurological exam, and a history of neurological problems. I saw 5 neurologists and it took two years even though the first guy said MS, the second said no and the rest said yes but would not diagnose it.

Alex

[UnsureMS]

At the start of everything I had an MRI done, spinal tap nerve testing. The only thing I didn't have on that list was a Capone and taping done. The MRI had one legion pop up. I had tons of bloodwork and I forget now what it was but I had something leading doctors to assume attoimmune and then they found at one point iron defiancy and then later that came back ok but b12 didn't. Each time my bloodwork was slightly different. They said they checked for Lyme because I asked them to, but I have been told the test they did isnt that is best.

I believe my doctor does specialize or at least deals with MS more. But since I am not getting anywhere I am going to get a second opinion. I thank all of ya for the answers. Also I know I probably give info not related to ms but its just because I don't know what is wrong with me. Thanks again

[ConfirmedRachel]

Hi U-MS,

Totally agree 100% with Kyle above.  You need to see an MS Neurologist not a general one. Mine is an MS Neurologist and like Kyle only works with MS nothing else.

Nx

[kwarendorf]

Hi UNsure- welcome to the group.

If you want to rule MS in, or out, you need to see a neurologist that specializes in the diagnosing and treatment of MS. You don;t want to see a doc that lists MS among many other "specialties". My doc treats MS and nothing but MS.

You should be prepared for an comprehensive clinical exam, MRI of the brain, c-spine and t-spine done with and without contrast, blood tests to rule out mimics like Lyme disease, nerve conduction studies and evoked potential tests. You may also be asked to have a lumbar puncture (spinal tap).

Only after you have data from a battery of tests can a doc trained determine if you have MS.

Kyle

[HVAC]

Not sure how not having fever fits in. I am the same. No doctor has ever explained the fever thing.

Alex

[UnsureMS]

Thanks...I am thinking about starting over now that I have insurance and seeing what happens. I didn't know their was specialist for MS. I just know the Nero has decided it is all from the b12 difiance and I had one legion on my brain. But the b12 has been under control for yrs and the sxs still there. I will look into that.

FOR ALL: one more thing I forgot to state is I always have been abnormal never had fever, always seemed to fight off sickness easily, and my blood must be abnormal cause Mosquitos and other bugs won't bite me.

[HVAC]

Have you seen a MS specialist? Neurologists specialize and not all know about MS. I went to neurologists for 40 years and it finally took an MS Specialist to diagnose MS. I did have lesions on my MRI and an abnormal lumbar puncture to diagnose MS, but not everyone has both.

Alex