Don't know where to turn - Multiple Sclerosis Message Board

bhmomof2 · 05-27-2009, 05:46 PM

I have posted once before on here, but with new test results I am even more lost. I had multiple leisons in the brain on an MRI, negative LP, negative evoked potential. Also blood test for something else came back normal.

I am actually feeling better than I have in a while. Still have problems with numbness and tingling but it is bearable. Stilll have pain at times but no sunburn feeling lately. ,I no longer walk oddly and the Provigil has helped my confusion and I am able to make it a while longer without being exhausted.

So I guess what I am asking is what do I have. My last neuro visit I asked her if not MS, then what? She said nothing else. But wants to continue treating me by my symptoms. She said you tell me what bothers you most and I will try and help. I am supposed to go back this summer but should I?

Is something wrong with me? Do I have MS? I feel so lost.
When friends and family ask me how are the results and I share they say is that good? Well I don't know the answer...can some one out there tell me. Please

MSNik · 05-27-2009, 06:39 PM

None of us unfortunately are going to be able to tell you if you have MS or any other disease. Im sorry. I feel your pain. However, what you describe certainly does sound MS like....
should you go back to the doctor this summer? Absolutely YES! And, if possible you should repeat your MRI to look for any changes. I have MS. I have many lesions on my brain. I have a normal LP and my Evoked potentials are not very conclusive. However, I have numbness, tingling, weakness on one side- many MS symtoms.....what it sounds like you need, more then anything is a second opinion OR a very clear answer on what is stopping your doc from giving you a diagnosis.
The mcDonald criteria is what is used to dx MS...you have most of it from your description; however it might take a separate episode for her to be sure, or it might take additional lesions on your MRI...whatever it is, Id want to know. Is your doctor an MS Specialist? Can you possibly find one for another opinon? They too, might want to give you 6 months to look for changes, but then again, maybe not...it might be something she is uncomfortable labeling you with for a reason.
Remember, once you get that dx, there is no going back. The drugs are very expensive, insurance companies will start watching everything you do and take--But at this point, youre either going to have to fight for a dx, or keep seeing docs until you get answers....you mentioned blood work...Im not sure what they were looking for, but if NOTHING showed up, thats another pointer towards MS...with MS, there is no blood test to confirm it, however, they use blood tests to confirm that it ISNT a deficiency, a thyroid problem or an infection.
It sounds like you are otherwise healthy...so, keep pushing. And, your not alone or crazy. Remember that!
Nikki

bhmomof2 · 05-27-2009, 06:57 PM

Thank you for replying Nikki. I have been sitting here with tears waiting for a reply. I am trying so hard to be strong. I keep telling my family I feel fine and that it's just mind over matter. My motto has been just keep acting healthy and you will feel healthy. It's not that I want a diagnosis of MS but I am so tired of putting on a smile and acting like I am okay. Even good days aren't as good as I pretend they are. Anyways, thanks.

Mel52 · 05-27-2009, 08:00 PM

BHmomof2, I can understand your frustration as I am in the same situation. Believe in yourself is the best advice I can give and don't give up in finding answers.
I was sick for 5 years not knowing what was wrong. Rashes, overwhelming fatigue, itching, brain fog, severe allergic reactions, inability to sleep etc etc. Drs patted me on the head, sent me on my way and one told me I was depressed. I responded with an answer if I were depressed, then I wouldn't care about trying to find out what is wrong, I would lay on the couch and eat bon-bons. Besides, do depressed people have fevers? That shut him up. It wasn't until the media broke the news about breast implant problems and I knew then I had an answer. I was right I had a rupture. I improved so much for almost 20 years until I was injured at work 4 years ago and so now I too am having undignosed problems. I wont give up either. So we can lean on each other and keep searching. Thankfully, there are wonderful people who have been down this road before us and are kind enough to share their knowledge. We'll be ok.
My family and friends know I am having issues. My husband is in remission with hemolytic anemia and he has had 4 hip replacement surgeries. We do the best we can. We have off days and we have good days. It is the reality of the situation. We do the best we can. If they can't understand it after we explained what we know, then it becomes their problem. It took alot of pressure off pretending to be just fine all the time.

MSJayhawk · 05-27-2009, 09:11 PM

When you are not feeling fine and you tell your family you are- you are hurting yourself. When you are hurting, tell your family you are hurting. Putting on a healthy facade does not deal with your personal pains. Everyone wants to see you get better.

I agree that thinking healthy helps you. You need not attend pity parties, but on days when you are "bummed-out", you need to take a rest and make sure your family knows that you cannot be Superwoman 100% of the time.

I hope you are able to achieve a diagnosis soon- whatever the diagnosis. In the meanwhile, you are in my prayers.