strange symptoms/no diagnosis - Multiple Sclerosis Message Board

wmjsease · 04-06-2006, 08:29 AM

All of my problems started after the birth of my daughter who is now almost 6. I started getting a tingling weird feeling in head and scalp. Then I started getting really lightheaded feeling. It wasn't bad for the first two years. I could tolerated it, but it was aggrivating. Also, the left side of my face would go numb alot. I lived with it for a while, but then I got to where I couldn't drive sometimes, because of the dizziness and lightheadedness. Also, terrible headaches. I went to my GP and he said it was just anxiety or depression and put me on nerve pills. Well it didn't help. So I called a neurologist myself, and was seen. He did a CT Scan with contrast and an eng, and said that he didn't find anything and put me on another nerve pill. It didn't help. So about a year passed, and all of my symptoms increased. I went to another neuro, and he did a lot of tests and came up saying that I was missing part of my cerebellum, but that the rest of my brain had compensated for it and that it was okay. He said migraines were my problem. I still didn't agree, so I went to two different ENTs and they didn't give me and answer. I also went to the eye doctor and he couldn't help. I have new symptoms lately. My right eye hurts really bad, and sometimes my vision in both eyes gets blurry. Also, the headaches are extreme, and I always feel like I'm going to pass out. Some days it's worse than others. My hands tingle and go to sleep alot, and sometimes I have a lot of tingling in my left leg. My face and neck are going numb a lot of my left side. I've had 2 mri, 2eeg's nerve conduction test and blood tests. Please help. What do you think? I've also had all the heart tests that they could give me to make sure I don't have blockages or anything and I had a carotid artery ultrasound. Everything always comes back clear. I have had to hire a lady to drive for me because I stay so dizzy/lightheaded. I have 3 kids and cannot do the things with them that I once could. Everything gets worse around my period, and I get really dizzy around crowds. Anxiety is probably the issue there. Please help.

TamCazz · 04-06-2006, 02:00 PM

I'm sorry to hear about all of your trouble. I can relate to a lot of what you are saying. I had horrible migraines before and after my last child was born. They got worse around my period, so my OB/GYN put me on some hormones to try to help. Eliminating my period didn't do any good. After a while, none of the migraine meds did any good, either. Over the past year, I got to the point that a migraine would keep me off work for days. When I had my first MRI in November, there were just a few lesions, which my doctor thought might be from the migraines, since they had been so severe. When I was diagnosed with Optic Neuritis just a few months later, the MRI showed almost 20 new lesions. Things just sort of picked up speed all of a sudden. Get yourself into a good neurologist, preferably one who deals with MS. That's what I had to do. I was sent to a neurosurgeon first (after going through some of the same cardiac tests you've been through), and he was clueless. I got my own referral to one of the best MS specialists in the Northwest from my GP - before I knew I had it. Hang in there!

wmjsease · 04-06-2006, 05:40 PM

thank you for your response. Unfortunately neither one of my MRI's showed lesions. They were completely clear. I am going to see a new GP Monday that luckily also knows a lot about MS. Hopefully he'll refer me to another one. Without the lesions, niether one of the other neuro's wanted to say it was MS. I feel like I have it though or something similar to it. I would love to have my head stop hurting and stop feeling as if I'm going to pass out all of the time. I hope that something can be done about it. Again, thank you. I'll post a response after I go to the doctor Monday. What did you do about your migraines/head pain. Is it better now?

dgibson70 · 04-07-2006, 04:25 AM

Unfortunately, MS is a very difficult disease to diagnosis. It mimics many other things because the symptoms are all over the place. The main things a doctor looks for are the lesions either on the brain or on the spinal cord, a positive LP result, positive evoked potential tests and at least two 'episodes' or attacks. You don't have to have a positive result on all of these to be diagnosed but since you mentioned you had negative results on all your tests so far, you will be hard pressed to find a doctor who will even entertain the idea of MS. Even people who have positive test results on some of these remain undiagnosed for years. I know my reply seems depressing, I apologize, and I certainly don't want you to lose hope. I just don't want you to limit yourself to MS as a possible reason or you might miss what is really going if, in fact, it's not MS.

Take care and chin up!

wmjsease · 04-07-2006, 02:19 PM

thank you I am trying not to give up, but it's so hard not to. I am so used to doing things my way, and being able to do things like I used to, but it's like everything is being taken away. I'm not able to drive, do things with my kids like I want to. My life is so affected by whatever this is. And all the doctors just want to write it off as anxiety. Thanks for the support. It's what I need right now. I'll be thinking of you all in your struggles also.