any advice

[Smn822]

For the past year and a half I have been in ms limbo land, is it ms or not? It all started with a simple eye exam where after shining a light in my eye and some test my eye Dr. told me I had optic neuritis which went hand in hand with Ms and that chances are I had it. I left the exam room in a puddle of tears and on a journey of test.


From that moment on I linked up with a neurologist and went thru a series of test checking everything from my eyes to my brain in spine eventually finding some lesions on my brain. Although they have found those the diagnose of multiple sclerosis has been all over the place. Thru my visits with my neurologist I have been told it's MS to it's migraines to there is nothing to worry about and then to being told it's MS and back again. To say I am frustrated would be a understatement.



I am completely on edge mentally and physically. Myanxiety is out of control which I know is understandable but it’s the physical symptomsthat are the worst. I used to be this spunky girl full of energy a tornado ofit and now it feels that everything I do takes so much longer.


I feel tired all the time now, and have headaches and jawpain constantly. Something in which I have always had but not to this extent.The headaches are so bad that sometimes they cause painful neck spasms. Themore anxious I become the worse the symptoms become the tingly feeling in myhead or weakness in my hand and the tips of my fingers.


There’s the big word again “Anxious”. Is this all anxiety,or is it real? Was it MS and not anxiety all along? I don’t know what is realand what is not and I hate it. Physically I feel it the fatigue, the tinglyfeeling but is it real.


2 days ago I went for a MRI. I was given sedation something I am used towith an extreme anxiety disorder and woke up slurring my speech and havinggreat difficulty walking. I chalked it up to the medication but as the dayprogressed and my balance grew worse I called my Dr and was sent to the er.


I spent 3 hours in a machine, was asked countless questionspoked and prodded and left with more questions why did this happen, do I have MSis this my anxiety. I am more frustrated then ever will I lose my job becauseof this, is there something they are missing. My family is supportive but Idon't want to be more of a burden to them I need someone to talk to anyone whohas been in limbo land or has MS someone who understands what I am going thru. Ifanyone could give me advice I would greatly appreciate it.

[Mamabug]

Your symptoms could be MS. Or, they might not be. Lots of things mimic MS.

OK. Many of us have heard those things. Unfortunately, they're true.

The anxiety is often another symptom of MS. I find that it works both ways:

1. MS triggers anxiety; I feel anxious about things that used to be simple daily stressors that were more manageable. And, in talking with others with different chronic illnesses, that's not uncommon for them either. Chronic illness has messed with our ability to manage "normal" stressors.
2. Anxiety triggers MS symptoms.
   • Sometimes, it could trigger an actual MS flare. Most of my flares, in fact, can be linked to a stressor that was going on in my life.
   • Other times, it triggers a pseudo-flare, in which the symptoms are very real, but, once the stressor is removed, the symptoms go away.

Limbo, for some, is short. Others have a longer time to wait before a diagnosis occurs. Wish I could be more help.

[Seasha]

From that moment on I linked up with a neurologist and went thru a series of test checking everything from my eyes to my brain in spine eventually finding some lesions on my brain. Although they have found those the diagnose of multiple sclerosis has been all over the place. Thru my visits with my neurologist I have been told it's MS to it's migraines to there is nothing to worry about and then to being told it's MS and back again. To say I am frustrated would be a understatement.

Hi Smn and welcome! I'm sorry you are going through a rough time right now. Frustration and especially anxiety, are unfortunately something that many of us have, or are now going through. Not to lessen your experience, but to let you know that you're not alone.

From your statement above, I'm wondering if you have given a thought to getting a second opinion? I think an MS specialist would be of great help to you and ease your frustration and anxiety. I went for years going to different doctors and neurologists, who did not specialize in MS (there weren't any where I lived in rural Alaska.) and they kept misdiagnosing me. When I finally moved and could see an MS specialist, the frustrating mystery was solved!

Breathe deeply and try not to stress right now. Not knowing is hard, I know!
Please take care of yourself and seek a 2nd opinion

[Smn822]

Hi Smn and welcome! I'm sorry you are going through a rough time right now. Frustration and especially anxiety, are unfortunately something that many of us have, or are now going through. Not to lessen your experience, but to let you know that you're not alone.

From your statement above, I'm wondering if you have given a thought to getting a second opinion? I think an MS specialist would be of great help to you and ease your frustration and anxiety. I went for years going to different doctors and neurologists, who did not specialize in MS (there weren't any where I lived in rural Alaska.) and they kept misdiagnosing me. When I finally moved and could see an MS specialist, the frustrating mystery was solved!

Breathe deeply and try not to stress right now. Not knowing is hard, I know!
Please take care of yourself and seek a 2nd opinion

Thank you both, I never thought of a specialist I live in Buffalo and it is so common up here I didn't bother to think to consider a specialist. Although all this time has passed since it was first brought to my attention as a possibility until the newer symptoms came to be I simply thought it was my anxiety a great challenge I face in my day to day life. Both of you are of great help and I will consider looking into that although I know the place I currently am going thru deals with ms I am thinking maybe you are right and will look for a second opinion. :]

[Mamabug]

Yes; Seasha's advice to seek an opinion from a specialist is good advice. I started with a general neurologist in 2002; he was considered to know quite a bit about MS in the Wichita area.

However, I switched to a specialist in 2008, because my MS was somewhat a-typical and had never seemed to be well-managed. I now drive 3 hours to my twice-per-year appointments, instead of the previous 30 minutes. But, my MS symptoms are under better control, and my flares are less frequent and less severe.