Please let me know what you think.. stuck in limbo land

[Serephena Amor]

For almost a year now, my life has been hell. It all started around October or November of last year and I am still without answers. All I have for you is a basic list of whats going on right now. If you have any input at all or advice please please please let me know. I live in an area with not the greatest doctors

Around November 2011 I started feeling like I was crazy because a whole mess of stuff started happening to me that gradually built up in intensity until around March of 2012 when it started to taper down to feeling somewhat normal.
I have near constant vertigo or general dizziness.

My vision started to get blurry in both eyes until all of a sudden I had a piece of my vision missing from my right eye. Optometrist has said my eyes are fine since then.

Random pins and needle numbness. It started out with just my feet but then eventually migrated to include my legs up to my knees as well as my fingers and sometimes hands.

My lips go numb, not pins and needles but more like I received a Novocain shot in my lips.

Loss of Balance and coordination. I started running into stuff, walking like a drunk and just generally being more of a “clutz”.

Having problems forming thoughts or coming up with the words when I want to say something. I feel like the idea I want to say will be in my head but I cant come up with an idea or words on how to say things.

Brain fog or confusion. I can be walking from one room to another and forget what I was doing, which doesn’t sound so bad. But I can also be driving fown the road to run a errand or something simple and completely forget where I am or what I am doing. Very scary.

Constant severe fatigue. Always very tired but getting enough sleep. Normally feeling like Im going to fall over by about 4pm.

A paralyzed feeling. I know im not paralyzed but sometimes it feels as if I cant move. The first time this happened I was the passenger in a car and when we arrived home I couldn’t get out of the car. I knew my legs worked but it was like my brain wasn’t telling them to move to get up. I ended up just sitting there for a bit verbally telling my legs “come one now, you gotta move so I can get up” after about 15 mins they slowly started to work again and I could stand up to walk. This happened a few times before March 2012.

After around the middle of March 2012 most of all of that stuff was gone or nearly gone. What stuck around was the vertigo/dizziness and the severe fatigue.
The rest of it just basically went away. I brushed it all off and decided to ignore it all since it went away.
During the beginning of June 2012 most if not all of these occurrences came back. Im still dizzy and have vertigo, and I still have extreme fatigue but now everything else is coming back. AGAIN.

And then today it became a little difficult to walk, almost like I had no muscule strengeth or my legs were super heavy. I had to keep sitting down while grocery shopping.

Please let me know your opinions or what I should ask of the doctors. ANYTHING??

[Redwings]

Hi Serephena:
Welcome! In order for us to answer your questions, we need information that you didn't include in your post. What we think you should do and what you should ask your doctors depends on what you've already done, what doctors you've seen, what tests you've had, what the results were, and what your doctors have already said. So we don't spend time reinventing the wheel, can you give us that information?

The more specific you can be about your doctors' visits and test results, the better we can be in our opinions. For example, the only doctor you mentioned was the optometrist. You said, "Optometrist has said my eyes are fine since then." What does "fine" mean and what does "since then" mean?

No matter what input we're able to provide, it's going to be that much more difficult for you to get timely, appropriate diagnosis and treatment if you live in an area "with not the greatest doctors." From what I've observed from reading MS and neurology forums over the years, the posters who continue to try to get good care in areas that don't have good doctors go through the most frustrating situations and have worse outcomes. So my first opinion is that you should start preparing yourself to see more qualified doctors out of your area, even though it might mean that you have to drive for three or four hours and spend some money out of your own pocket.

[JayEm]

I'm sorry things have been so hellish for you.

My attitude with doctors is that it's not a matter of how many good ones there are, it's about how good the one you find is. Not sure if that's helpful at all, or whether you've got a way of asking around to see if there's one good one you can actually see.

I lived for 8 1/2 years in an area that has really good doctors in general, but the specialists I actually managed to see were less helpful. I'm now in an area with fewer doctors, and the neurologist that I'm seeing is asking questions I really wish had been asked 15 years ago when I was first getting sick. (Or 18 years ago when I first had double vision--also in an area with good doctors in general, but not-so-great doctors in my specific experience.)

When I've had a halfway decent doctor, what's helped most is having a detailed, printed list of what my symptoms are, when they started, and how long they lasted. At the top, I have a short list of the things that most concern me at the moment.

I also would have a list of the tests that have been done, and the results of those tests. It might not save you from having to go through the tests again, but it can give a doctor an idea of what's already been explored.

Which doctors have you seen thus far? Do you have a good general doctor? It can sometimes be useful to see specialists they've already got a relationship with, because that can ease communication between the doctors.

Good luck.

[Serephena Amor]

Oh, im sorry I forgot to mention everything. My GP has ran every blood work test she can think of and has sent me to the cardiologist thinking it might be my heart but my heart is fine. I saw the optomitrist after I temporarily lost pasrt of my vision, But he said my eyes look perfect and I have 20/20 vision. I have an MRI on thursday and she said depending on the results of that she will refer me to a neurologist. I say we dont have the best doctors because I live is a very rural area where you have to push the doctors pretty hard to get them to test for anything. Everything my doctor has tested for was becuase I have requested it. Thats why I ask for opinions.

[JayEm]

I say we dont have the best doctors because I live is a very rural area where you have to push the doctors pretty hard to get them to test for anything. Everything my doctor has tested for was becuase I have requested it. Thats why I ask for opinions.

This has been true for me much of the time--when I finally saw my current neurologist, it was the first time a doctor thought to run tests other than bloodwork that I hadn't advocated for.

One thing I've learned is that patients need to advocate pretty strongly for themselves, no matter where they live. It can be challenging, because many doctors seem to get offended by patients who are assertive about getting their needs met, but it's been about the only way I've gotten the responses I need.

When I feel like maybe they're right and it's all in my head, I just remind myself of the time I had what turned out to be a broken foot--it didn't show up on the first round of x-rays, and the doctor seemed insistent that there was nothing wrong. I advocated (because I liked walking without pain) and eventually got referred to a specialist who did finally figure out what was wrong.

So my attitude is that I know my body, and I have the right to be insistent about finding a treatment. Well, that's the attitude I try to have. Plenty of times, I back down and try to convince myself I'm just imagining things.

[Serephena Amor]

With all the "symptoms" I have, I honestly dont know what else it could be besides MS. I have been tested for just about ever auto immune diease, lyme diease, heart problems, and I have had blood work done every month for the past nine months and "nothing is wrong so far".

[Serephena Amor]

I just lost almost all strength in both of my hands. about 2 hours ago my hands got really cold, then then my arms started to tremor a little bit then I noticed I cant squeeze anything. I can make a loose fist but no squeezing strength. My 3 year old is stronger than me right now. Im so scared bc this happened so randomly, but I know the doctors cant do anything about it

[Redwings]

Hi Serephena:
Sometimes how things transpire depends on how a person's medical insurance works. But it sounds like you should have already been referred to a neurologist, certainly at the time you lost part of your vision and it was determined that the cause wasn't in the eye itself.

Because of your history, you should see a neurologist no matter what your MRI shows. That means that you may need to insist on a referral even if your MRI is normal. It might mean that you have to seek out a neurologist on your own, and that doesn't mean your local neuro on Main Street.

My best advice is to you right now is to stop trying to get blood from a turnip. Get copies of all of your medical records for the last year -- be prepared to pay for them, even if you think it's too expensive. MRIs are done digitally nowadays, so you should be able to get a copy of your MRI on a disc. Be sure to also get a copy of the radiology report that goes with it.

In the meantime, find out where the nearest one or two university medical centers are and work with your doctors or medical insurer to get a referral to the neurology department at one of them. It doesn't mean that you'll have to go there forever, but you should at least be worked up and diagnosed by doctors who already know what tests need to be done and how the results should be interpreted.

Next, educate yourself as much as possible about how MS is diagnosed. You can start by going to the website of the National Multiple Sclerosis Society (www.nmss.org) and selecting About MS > Diagnosing MS. That will give you a better idea of what tests need to be done and what to ask your doctors about. Then you can compare your medical records to the ideal. it's also a good idea to take your own copy of your records to the neurologist just in case the copy that the neurologist was supposed to get doesn't get there.

Also, make a list of all of your symptoms for both episodes, including summaries of when they occurred and for how long -- e.g., lost part of vision (including location and which eye) from month/year to month/year. Take that list with you to the neurologist. That's important because the criteria for diagnosis of MS include evidence of episodes of demyelination that are characteristic of MS.

My philosophy is: Rather than wasting time and energy on training and pushing your doctors, go to doctors who don't need to be trained or pushed.

[minivanmama]

Bless your heart that you are looking for answers. You have been given some good answers. I hope that you can find a neuro that is good.

You may have to travel to see one. My neuro is a hour away and my DH has to drive me there. It is well worth the trip.

Keep hanging in there and i hope your MRI will give you some answers. Let us know how it goes and keep on posting.

Lots of (((hugs)))

[Kraheera]

Keep pushing for a diagnosis. I was lucky in how short my wait time was.

I have a friend who STILL doesn't know exactly what is wrong with her, other than her liver is getting destroyed. She doesn't drink. She doesn't have Lupus. She doesn't have Lyme's. The doctors are stumped, but she keeps trucking along.... 4 years later.

Yours shouldn't take 4 years. You have an idea of what it is, now seek a doctor that will test for it.