Multiple Sclerosis??

[Swivel]

I have been diagnosed with HHV6, EBV, coxsackie B4, Post Osterial Tachycardia, Chlamydia Pnemonia, and CFS. My symptoms go on and on. I have dizziness, muscle weakness and pain, strange sensations through out body especially arms and legs, ringing in my ears, tremors/shakiness, strange vision disturbances, headaches and facial pain, and extreme fatigue. I had an MRI that showed one lesion in my brain, a hemangioma in the thoratic region and some mild degeneration in my cervical spine. I have been feeling ill since Feb 09 and as my condition continues I think I can recall feeling some of these symptoms as far back as 15 years old. I have has pnemonia 2 times and had HPV when I was a teen. I am 30 years old now and have 2 wonderful children and an amazing husband. My question is where do I go from here? What kind of doctors should I be seeing? How sick am I? Is it the viruses or is it something more like MS that is making me feel this way? Any support helps and I would love to get some more ideas about what may be going on with me.

[Siddy1]

Duh!  I just looked up FMLA thinking it was a disease I've never heard of. Now I feel stupid!

[Swivel]

Thank you for saying hello, found the part about the overactive systems interesting, great share. I really apreciate having people to talk to. Thanks again.

[Swivel]

Actually my friend swears that I am one of the only people that has ever been able to describe her pain and discomfort. She swears that I have Sarcoidosis. I guess I have always thought what are the chances that we would be friends before knowing we both had Sarcoid. Course I have been a million in one in other things, LOL! I even have 3 small rigid bumps under my skin which she swears is the same as her sarcoid skin lesions. Her bumps are in the red ink only areas of her tattos. They look very similar and feel pretty much the same. I have watched her struggle for 5 years. In and out of remission and treatments.  

[Lulu54]

Hi Swivel, and welcome.  As you've already seen this is a very compassionate group of people.

Seeing a neurologist for a complete evaluation should be in your very near future.  Chest pain as you described does not normally go with MS, nor does pneumonia.  Chest pain from the infamous MS hug is a different type of discomfort from what you write here.

Contrary to common thinking, even though MS is thought to be an autoimmune disease, our systems are overactive when it comes to germs and viruses.  MS patients can be a pretty healthy bunch - as ironic as that may sound.  Colds and other germs have trouble takking hold in our bodies because of the overactive nature of our immune system.

Good luck with the next steps and I hope we will see you around.  

be well, Lulu

[Deb61]

No.  A chest x-ray is unlikely to show evidence of sarcoidosis.  Ask your friend about her symptoms.  You will be shocked how similar they are to MS.  

[Swivel]

I have had a chest  xray is that the same as a CT? I have a close friend with Neuro Sarcoidosis.

[Deb61]

Have you had a CT of you lungs?  Sarcoidosis is very difficult to distinguish from MS.  

[Swivel]

Thank you so much for answering me. As for the MRI I had one done by a neurologist of my brain and spine and the findings were as stated above. I want to have another MRI done and see if there are any changes. The neurologist seemed uninterested in my case and had little experience with viruses etc. He is a specialist in MS. It seems that there are very few doctors familiar with my multiple conditions. I have had blood work for lupus, RA, Chrons,  Lyme, Diabetes, and HIV - all negative. I have had a lot of blood work done and all my functions (kidney, liver etc) are good. I was on the lower scale with vitamin D. At one point when I first started getting sick my White Blood Cell count was high and so was my mono/abs?? In the last three months I have started to have chest pain (not my heart) in my sternum area and they still have not found a reason for that. I have very few good days physically but I just keep going. There is no way I could commit to a job but I do ok at home with the kids, my husband has FMLA so he can come home when its really bad. Some of the little things that impact me the most are brushing my hair, dizziness, folding clothes (feel like Im holding a brick out infront of me), and strange vision things like a few times I felt like my face was twisting up, or feeling like the road and surrondings are moving when I drive not the car, little specks of light, ringing in my ears, hard to lift things, weakness in my hands,  shaking, and some headaches and horrible face pain. As far as my cervical spine, my MRI report says "Minor degenerative changes in lower cervical spine" I feel horrible but still look healthy and at first impression most people would never even know. As for the people that do know me they can see the major changes.

[Deb61]

You would benefit from seeing a neurologist.  You need a complete work-up to determine the cause of your neurological symptoms.  The neurologist should do lots of blood tests to help them figure out what it is and run other tests to determine the cause of your neurological symptoms.  

Because you have had so many viruses, my guess is that you have an autoimmune disease.  The reason I say that is that when you have an autoimmne disease because your immune system can sometimes limit the body’s ability to fight off foreign invaders, such as bacteria and viruses.

It is hard to say if you do or don't have MS.  If you presented with strange sensations throughout your body, I would say it would be unlikely that you have MS because with MS it usually affects one arm, one leg, or one side of your body, etc. because of where a lesion would be located in your brain or spinal cord.  It is unusual to have a lesion in both sides of your spinal cord; however, you've been sick since you were 15 years old.  You could have a heavier lesion load than what was seen on the MRI and possible have symptoms throughout your body.  The MRI may be hiding a few things, depending the strength of the MRI and how thick of slices of the images.  

So, you do need to see a neurologist.  I would also say that you need to have an MRI of your cervical spine, too.  You need a full blood work up.  My guess is that your neurologist will find some indicators of a different autoimmune disease.  If that is the case, you should see a rheumatologist.

Best wishes,
Deb

[Sumanadevii]

I don't know most of the things you have been diagnosed with but some of your symptoms are MS like.  Have you had an MRI of your spine?