Waiting for diagnosis?

[Spyci]

Hello, I'm Lisa.
So happy to find this group.
for a long time I've had symptoms of MS ..

I've had problems with my left Eye, went to an optic neurologist who told me I had eye apathy and probably is a ms but send it back to my neurologist. He told  me to wait a year and  go back to him and see if it gets worse.
I have bladder problems I have numbness in my feet and pain.. I have numbness in the sides of my legs and  don't  feel it.
Had really bad migraines for a long time, the doctor started giving me Botox which really helped it even helped my neck pain.

MRIs did show that I have slipped and herniated discs in my neck and lower

I was diagnosed with a illness by ENT Dr for dizziness called BPPV.  I have a bad time with balance.

Today i was having minor surgery and they wanted to give me a spinal, I told my symptoms to the Anesthesiologist and said the doctor has not given me the diagnosis of MS but I'm sure I have it. He then changed the spinal to a general anesthesia.  I need to know do i have it?  If I did not mention this to him I might've lost  feeling in my legs.
I have Very hard time focusing I forget things, mentally. Sent to another Dr. My Neurologist got back a report from a neurologist psychologist that said that the white matter in my brain could be why I am confused. Yes I had an MRI of the brain Showed Excessive white matter suggesting MS.

I was falling a lot last year whenever I get stressed out no reason at all, one time I had a grasp around my ankles (felt like i tripped over a metal rod) That's what finally brought me to the neurologist to see what was wrong. I had all the symptoms by looking them up online
All Equaled MS


In conclusion,  i was afraid to take a spinal tap because I'm afraid and He said it's inconclusive so why should I? so he's just waiting a tear which is June for a repeat of the MRIs to check them against the old ones. Last year.

Dr said giving me medication right now would have side effects and he doesn't want that for me, Hey said if it gets worse  he will give me medication. I feel if I have medication it won't get worse. Am i right?


Should I see another doctor or can you suggest other tests? Need to know if I have it so when I go for a procedure like today I can say I have MS and to be quite honest at this point I would be relieved that that's what it is...sounds crazy but seriously

I'm sorry if I'm all over the place with this, I'm just so upset tonight thinking about what happened today and not wanting to get worse and happy to find this group I  hope that you might be able to help me make the right decision, no one else understands . thank you for reading

[kwarendorf]

Hi jeckman - Welcome to our group.

7 years is a long time to go without answers. In your shoes I would look for a fresh set of eyes to look at your situation. I don't know if you have been seeing the same neuro the entire time, but if so it's definitely time for a second opinion.

Have you had MRI's recently. Spinal lesions can be hard to spot and it may be that brain lesions were not visible yet.

Kyle

[jeckman]

What is a person to do for any kind of treatment or therapy while they are waiting for a MS diagnosis?  I am going on 7 yrs with symptoms of MS but the major ones such as optic neuritis and lesions on my brain and spine are negative.  The neurologists will not prescribe the MS drugs to me.  I have gone to acupuncture, the MS walk clinic (balance is my biggest issue), PT, and practiced yoga and joined a gym.  I try to eat healthy as well.  
The only drug the neuro prescribed was Neurontin for my nerve pain.  I take Advil regularly for generalized pain.  In the meantime does anyone have suggestions for me?

[Spyci]

Thank you you so much:). MRI's  and the evoked potential not good, going for year followup next month.

[yadita20]

Tests used to diagnose MS

Magnetic resonance imaging (MRI) of the brain and spinal cord. This test is done to confirm a diagnosis and help your doctor decide which treatment is best. More than 90% of people who have MS have an abnormal MRI result.2 For people in whom MS has already been diagnosed, MRI scans may also be used to follow the progression of the disease. MRI and neurologic examination may help doctors predict which people will develop MS after a first attack of symptoms.3See an image of an MRI showing MS in the brain.Lumbar puncture (sometimes called a spinal tap). This test may be done to evaluate cerebrospinal fluid. Most people with MS have abnormal results on this test, such as abnormal levels of a protein called immunoglobulin G (IgG) or a mild increase in white blood cells.Evoked potential testing. This test can often reveal abnormalities in the brain and spinal cord and in the optic nerves that a neurological exam and other tests may not be able to detect.

[Spyci]

Thank you so much, its so discouraging. What you say makes so much sense. I had gone to these Drs and had the tests because I had symptoms to see those Drs. Eye probs, memory. MRI bad etc. After the surgery yesterday I am getting on the Dr though to DX me because I cant take a chance of getting a spinal if Im not able to tell them my illnesses. That really scared me ..before that I was just waiting for Jul, my 1 year ..time for more MRI's to see if it progressed. Thanks again Sarah.

[SarahL2491]

you do not HAVE to take all 3 tests to be Dx with MS.
I did NOT have an LP (spinal) until a year after I was Dx and it was just "to see" if there were O bands and there were none

Evoked potentials are not required.  The McDonald Criteria is usually what the neuro uses but he can use what he wants.........Mine used the MRI and the CIS letters from my eye doctor.  They were separated in time by a couple years.

Now, you can have all of these done and still not see the MS, there are people who never get a Dx because either the doctor isn't dedicated enough or they don't feel there is enough other evidence.  Which is why some of us spend years and years looking.

[Spyci]

Thank you all, I had the evoked potential ans MRI's showing the white matter being that of a 80 yr old,I m 40. I have no lesions. I wont take the spinal tap , its not 100% & I am afraid to upset the area since i have suck bad back pain. I know the feeking being dizzy, found out I had the BPPV in the evoked porental test & I am treated with Epley Maneuvers. Have you tried them?

[yadita20]

What I meant to say is that from 2007 to 2013, I was taken 2 MRI's a year looking for the cause of my constant dizziness.They spotted in 2007 a large lesion in my right frontal lobe, and they said it was not causing the dizziness but they didn't know what that lesion was.I felt neck pain, neck stiffness,....The doctors never mentioned the word MS to rule it out.In conclusion, there are several tests to diagnose someone with MS , and one single test can not be final.As I said, my advice is to take several tests including those 3 I forementioned.That is the way I found out what I have and I just want to share it to the world , so they have a clue and get treatment as early as possible.Thanks.

[yadita20]

What I meant to say is that from 2007 to 2013 I was taken 2 MRI's a year looking for the cause of my constant dizziness.They spotted in 2007 a large lesion in my right frontal lobe, and they said it was not causing the dizziness but they didn't know what that lesion was.I felt neck lain, neck stiffness,....the doctors never mentioned the word MS to rule it out.In conclusion, there are several tests to know if someone has MS , and one single test can not be final.As I said, my advice is to take several tests including those 3 I forementioned.That is the way I found out what I have and I just want to share it to the world , so they have a clue and get treatment as early as possible.Thanks.

[immisceo]

Yadita, I'm afraid you're a little mistaken on the testing there. At the end of the day, you don't have to have any of those tests, though MRI is considered best practice these days.

Many people don't have spinal taps or the results are negative even though they are diagnosed, I myself never had evoked potentials and many people don't, and MRIs can be less conclusive than you'd think. Again, clinical observations are often the clincher in the end and testing is used to make sure it's less likely to be a mimic.

Perhaps you meant that the tests are a good idea if MS is to be looked at as a possibility. This is true. Those tests are pretty standard along with many blood tests (none of which will tell you 'you have MA', but will help narrow down the field of possible issues)

[yadita20]

I am sorry to hear that.I went through exactly the same thing as you.I went for 6 years from doctor to doctor,and none of them mentioned MS at all.Last year I was performed a craniatomy of my brain to find out if my lesion was a tumor.The result was negative,but they still didnt know what the lesion was.I went to Cuba to see the doctors and un 2 weeks I knew I had MS.My advice to you,there are 3 tests you HAVE to take to be diagnosed to MS:spinal tab,MRI,and evoked potentials.You can not be afraid.The ooner you know the better.Good luck.I have been suffering from severe dizziness for over 6 years now.

[kwarendorf]

Hi Lisa - Welcome to our world :-)

As Tammy said, the diagnosing of MS can be a long process. It sounds like your doctor cares. This is good because a lot of neurologists are dismissive.

One of the key components of the MacDonald criteria, the standard for diagnosing MS, is dissemination in time. Your doc is going to be looking at your MRI's to see if any new lesions appear on the June pics. If there are new lesions then the dissemination in time criteria is met. It's nearly impossible for MS to be diagnosed on the first visit. There is always some waiting involved.

immisceo has given you an excellent explanation of the kind of drugs that are used to treat MS. I've benefited from all 3 types :-)

I now you want relief sooner rather than later. Try and be patient. If it is MS there is no real rush. It is a very slow moving companion...

Kyle

[immisceo]

Drug-wise, there are three types of options a doctor has when approaching treatment for most people with MS.

There are corticosteroids for acute issues, usually in the form of IV infusions. These are the heavy hitters, methylprednisolone, etc. Typically not the orals.

There are medications to help with on-going symptoms like pain, fatigue, etc. These medications are not specific to MS, and may be prescribed for other conditions as well.

There are disease modifying drugs (DMDs). There are several out there and they work various ways, but essentially what they are believed to be doing is reducing the relapse/episode rate. It's still a bit murky to what extent they alter the underlying (invisible outside of an MRI) disease progression.

I can't really speak with any authority or personal experience on the rest of your post, but I would say please be mindful about looking up MS online. The symptoms are so wide-ranging that it often seems to describe someone perfectly, when really it's not the culprit at all. Google is not the best diagnostician.

[Spyci]

Tammy,
THANK YOU SO MUCH FOR THE WELCOME AND FOR THE FEEDBACK:) I JUST THOUGHT IF YOU START A SPECIFIC MEDICATION IT MIGHT STOP THE DISEASE FROM PROGRESSING? THANKS (oops sorry caps).

[maxthecat43]

Hi Lisa,  

Welcome to the forum.  I'm glad you found us too.  The only thing I can say with any certainty is that if this is MS, eventually a doctor will be able to tell you.  It can take a long time to get a diagnosis though, so patience will be very important.  (And may even have an effect on your health!)

Unfortunately, none of the medicines we have will cure MS.  Even the meds for symptom management don't keep everything under control- but they do help.  


Hang in there,
Tammy