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Regular Member

Date Joined Jul 2017
Total Posts : 30
   Posted 8/17/2017 3:21 PM (GMT -6)   

I've posted in a few different forums (anxiety / migraines) but I wanted to try here too because every time I get a new symptom it points to MS... I am 24, female, and do have OCD/GAD. I have always had them, since I was very young.

My journey begins in 2016. From the get go, I had costo and asthma/pleurisy all DX. This was Jan - May. In March I noticed a weird gritty feeling off and on present behind my right eye only. It was very strange, I thought I had something in my eye. It would only happen off and on. It wasn't until August of last year that I began having pain. It was behind that right eye, my temple throbbed, and the corner when the eye meets the nose hurt so bad. I was told sinus infection, the meds did help but it continued and stayed until December. I had a CT scan of sinuses, it was normal. I had seen an ENT who scoped my nose, and eye area. Normal. I had seen a eye doctor, said my eyes were fine. I was lost, saw my doctor again he said migraines and put me on Topamax.

It actually made me worse, I had weird feelings in my right arm and saw blue dots. I got off quick and it all went away. I was put on another in the same class, it helped some. Eventually it all went away in December.

Now, I have had problems with nerves in my right leg since I was 18. I had always had these issues off and on with burning and it feeling just "weird". I could walk fine. It comes and goes but I think I have nerve damage in that leg. It is just weird how it is all on one side of my body. Anyway--

Fast forward to June of this year. I had very little issues up until June from December. Suddenly, my headaches came back. I wasn't super nervous at first. I had seen another doctor, she automatically put me on for a MRI no contrast. I did that in July of this year. I had an appointment with a Neuro in August. From the beginning of July until now I have had a TREMENDOUS change in symptoms. At first it was the right back of my neck, throbbing pain constantly. Half of my face (right side) seems swollen a bit compared to what it was before. Like it almost sags... but not extremely noticeable unless I take a picture straight on. There is pain in my temple, my jaw, my upper and bottom teeth (pressure pain not so much stabbing). I have had burning sensations in my ears, my throat, the skin of my neck to my collarbone. My voice is going out slightly. My throat feels tight like I am about to cry. My arms are weak, shoulders have pain, back hurts off and on, my tongue is off and on tingly, I've had RIDICULOUS brain fog and dizzy feelings. I feel like I cannot talk right half the dang time. I'm not sure if this has to do with my jaw pain or tongue weirdness... My muscles have been twitching a lot. Everywhere, all over my body.

When I saw the neuro, he said he was 99% sure I did not have MS because my mri was normal. I did not have a LP. It put me on some antidepressants which I am not sure about taking. He seemed to not really take me seriously. Idk... I just feel super lost. I am so concerned I have MS or something really bad. I haven't had any bladder issues but I get UTIs super easily. I also can see just fine besides some blurriness here and there but nothing crazy. My walking and balance is okay, I just feel like my arms and legs are a bit weak. Especially my right arm, I even feel like my fingers (middle and ring) joints are stiff.

Idk what to do or think. I was tested for lyme but he said it was negative. All my bloodwork was fine besides vitamin d was low. I am so very stressed with all these health issues. I've seen many many doctors these last few weeks.

I am not sure if I should push for a LP or not...

Forum Moderator

Date Joined Jan 2007
Total Posts : 3571
   Posted 8/18/2017 8:57 AM (GMT -6)   
Hi there. I'm sorry you find yourself considering an MS diagnosis. Brain lesions are a hallmark of this disease. Without them, you most likely won't get a diagnosis of MS. I'm sure the neurologist gave you a neurological exam. He/she would have been looking for failed reflexes and responses that may indicate damage or dysfunction in the central nervous system.

Low vitamin D can cause symptoms. It can be a serious matter. I hope you are very aggressively treating that. You should retest in a few months.

MS is different for every patient. Certainly some of your symptoms may be associated with MS, but you have lots that are not. The pain you describe doesn't appear to be consistent with MSc neither does any sort of joint pain.

Overall, your symptoms align more with Lyme Disease. You may want to consider more testing. Testing for Lyme Disease is notoriously bad with many people receiving false negatives. I encourage you to post on the Lyme board here.
Diagnosed with MS July 2006, Celiacs 2012, RA January 2017

I have no lesions on my soul and so I live with no limits.

Regular Member

Date Joined Sep 2017
Total Posts : 419
   Posted 11/17/2017 4:19 PM (GMT -6)   
I concur. Testing is awful. The results may be interpreted as CDC "Surveillance" negative when you actually are lighting the test up.

That was the case for me- 4 positive bands. 5 required to be CDC "surveillance" positive. It may be a good idea to copy your post in the Lyme forum and see what everybody else says.

New Member

Date Joined May 2018
Total Posts : 1
   Posted 5/29/2018 6:24 PM (GMT -6)   
OMG!!! I just joined this forum & saw your post. The same with me! I was tested numerous times for Lyme, always negative per CDC Protocol. I was Misdiagnosed as having MS 5 years ago. Long story short, I have Lyme... going to the Lyme discussions next.
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