Where do I go from here

[CareBayer]

Im at a whole total loss right now. I've had just about all the testing except for the Lp. They have all come up negative. My body is going downhill very fast. I still have a the sensory issues, spasms but not as bad because I take Neurotin 200 mgs a day. The overall malaise, fatigue, tremors and weakness in my legs are becoming unbearable.

I dont feel like I have any quality of life right now. Im 28 years old. Seems like no one understands due to me looking fine. On the inside Im a mess. Im probally going to loss my job, insurance and income. Its getting me to me. I have basically become a home body. All I do is try to make it to work, but thats getting more and more difficult due to the fatigue, nausea. My employer has been good to me. I have been offered another job but its more physically demanding. I tried to explain to my ex boss, but she doesnt understand (I work in the medical field). In the area I live in there arent to many jobs other than the medical field. I dont know what to do. How do the rest of you cope? I am currently not taking any anti depressants but made a appt to see a psychatrist.

[Amyloo]

I agree with bumping up your neurontin; I take about 1800 mg a day.  I also agree with totally ruling out Lyme disease, with a dr. that understands Lyme and will run the proper test (Western Blot) through a proper lab that understands tick bourne illness.

Also, if you can get your hands on a copy of your MRI report, not just the CD, do so and read it yourself.  I had two doctors completely dismiss the leisions in my brain; I had no clue they were even there until I read the radiologist's report then went to a third neuro.

God bless you, Amy

[shorty1969]

my name is tania an i am 39. for the past 13yrs i have been going through excactly the same as u, numb from the waist down, loss of strength in my legs with bad coordination, ants can crawl on my feet and i can`t feel them, always tired, i sleep my life away, my speech slurrs and i can`t seem to get my words out, and i have cramped hands. sometimes these can last a day or a week. my 4 mri`s , normal, LP positive 4 devics syndrome. there is no cure and i wish i could go back to the way i was, netball, tafe, partying, but i can`t. it`s very frustrating and the only way the LP came back positive is that i had an attack just before it. i hope this helps u, u r not the only one who watches the world go by, just try not to stress(thats hard, i know) but stress also makes u worse, an keep out of the sun, good luck and best wishes. luv tania

[CareBayer]

Thanks, I never thought about Lyme. Im due to go back to my pcp next week. I will mention something about it to him.

[sarcasam]

Have you also thought of Lyme   it has many of those symptoms as well..i watch the medical mysteries show it is very interesting ..my kids and i where watching it one time and they looked at me as they heard another women going through the same exact process of elimination that i have been through...but i recently watched one on Lyme and there are i believe two tests for it one more though than the other....she was first told know and another doctor did the more detailed test and found out that that is what she had..she was very ill for about 2 years before she found a doctor that did not think she was nuts....  so hang in there and don't give up   keep pushing them..to many doctors ignore our complaints....

[Ley5792]

It has been a long time since I've been on MedHelp. I had forgotten how great it was to have people to relate to. I am 25 and have been in limbo land for a year and a half now. I've gone through ALL of the testing....some of it twice and still no answers. The neuro's say that other than my symptoms I appear to be a perfectly healthy young woman. I wish that none of us had to be going through it all, but it is so nice to know I'm not alone.

~Ley

[CareBayer]

Thank all of you for your expertise. I know most of you have been there done that and I apprechiate all the advise.

I've looked up Parkinsons because I thought there was a remote chance I might have that due to the tremors, but it doesnt match the rest of my symptoms. I have a boat load. The neuro doesnt understand how can I have so many symptoms and nothing showed up on the mri. He told me he was going back to look at my mri, but at the first visit he gave the cd back to me. I dont know if he saved a copy to his computer or not.

A majority of my symptoms started within days of each other. First was the spasms, then the pins and needles, weakness in both my arms and the resting tremors. A couple of months later came the fatigue, numbness and the jump eye movements. Now Im having trouble with my balance and weakness in my legs. I can deal with the symptoms if I werent having them all at the same time, but I am. All the symptoms I started with arent going away except the weakness in my arms.

[essdipity]

I'm sorry things are so bad with you. Limboland can be terrible. But even without a diagnosis you can get better treatment for your symptoms. It's possible to take as much as 3600 mg of Neurontin a day. Your dose is tiny, so see if you can get an increase. Neurontin is not for spasticity, so try to get some baclofen as well. For the extreme fatigue, there's Provigil, among other drugs.

None of these things will cure MS or any other disease, but they do help us cope. You can feel a lot better, without taking addictive drugs, so don't hesitate. An anti-depressant might help too, although anyone would feel depressed if her job and income were threatened and there was no relief in sight.

Please look into these suggestions, and let us know how you do.

ess

[Octarine]

I hate to say this, but "normal" MRI and blood tests, and your resting tremors, are consistent with Parkinson's.  Has your doctor been considering this?

Check out this link:  http://www.umm.edu/parkinsons/diagnosis.htm and the links in the sidebar at that site.  They recommend seeing a specialist in movement neurology.  Maybe the MedHelp Parkinson's group can help you too.  

I hope you find your answer soon.  

[nncdalton]

It breaks my heart to read your post because I felt the same way. I was in my mid 20's too when all of this happened. That is hard because you are supposed to be in the best time of your life and you see al of your friends and they are fine and they do not undersatnd what you are going through. I am so sorry that all of this is happening to you too because I remember the feeling of isolation. I think talking to other people that are going through all of this too or have been through it before will help, like being in this community. Everyone is so nice and they know alot. There is a lot of wisdom here. You are taking control of the situation if you think about it. You are not gonna lie down and take it with out reaching out to others and going to the psychiartrist. This will not defeat you!

Christy D

[Janette2836]

I so feel your pain!  I am also un dx'd & find it very frustrating to have our bodies doing all these things that we do not understand & everyone thinks we are just fine (according to the tests & our apperance).  The fatigue seems unberable most of the time.  I am sure others on here will post soon but until then - you hang in there.

Janette