I'm about at my wits end here

[ForgivenFaith114]

I am a 27 y/o female that has had unusual symptoms for a while now.

They started when I was 22. I developed urinary frequency, urinary urgency, and occasional urinary incontinence. I was diagnosed with an overactive bladder and was put on medication for it. The symptoms improved. The cause for OAB at such a young age was never considered.

I did have suspected residual nerve damage from taking INH treatment in 2005 for latent TB. I had complaints of numbness, tingling, etc in my feet/toes. But the bladder symptoms didn't start until 2 years later.

I saw a neurologist in 2009 that did confirm I had residual nerve damage from the INH but stated the fact that my complaints of numbness, pins, and numbness had a varying nature in severity was unusual if I had stopped taking the INH years before. I was tested for diabetes, HIV, RA, lupus, Lyme disease, and low B12 and all came back normal.

In the meantime, my levels of fatigue were worsening to the point I would sleep 9-10 hours a night and would wake up tired like I hadn't slept at all.

In 2010 I developed muscle twitching in both legs and occasional problems with my balance and coordination. I was told that it was 'probably anxiety'.

Last year, I developed numbness in my left leg and left arm to the point I was weak and almost fell a few times. I went to urgent care, the doctor didn't even do an exam, he just said again it 'was anxiety' and sent me a Neuro.

I saw the neurologist last year in 7/2011. He did an exam and labwork. I came back positive for exposure to CMV and EBV. He did tests for the peripheral nerves in my left arm and leg and said they were healthy. He diagnosed me with CFS and fibromyalgia. He said that these diseases can cause sensations of numbness and tingling in the arm and leg. He said that I was also probably having panic attacks and that could make the sensations worse. (the numbness was so severe at one point, I could hit my foot against something and it wouldn't even hurt. I wasn't having a panic attack during that time)

The symptoms got better so I easily forgot about it.

This year at the beginning of August I had another flare. It started with worsening balance, coordination, and near falls. I thought maybe I was stressed. Then I developed more problems with short term memory and concentration. I became concerned because I'm a nurse.

Then the numbness came back in my left hand and foot. I almost fell a few times trying to get out of the bathtub and it was difficult for me to walk in the dark to the bathroom at night. My left hand would hurt when I tried to use it.

So, I went to the doctor and he ordered an MRI of the brain and spine. He said if it wasn't MS it probably was stressed related (stress isn't making me clumsy to the point I almost fall).

Last Friday at work I almost fell and over the weekend the symptoms of poor balance worsened and I started having areas of numbness on my left facial area. I called out of work Monday, went to the doctor and they changed the MRI to somewhere else so it could be done sooner. I had an MRI of brain and cerevical spine w/o contrast Wednesday.

I went to the doctor Thursday. He said he was concerned about my near falls, worsening short term memory and said it probably would be best if I stay out of work until more testing is done and I am cleared. He said he wanted some neuropsych testing done to evaluate my memory and concentration problems. He said he wanted it to be a neuropsych doctor so they could evaluate both the cognitive problems AND the numbness and near falls.

Needless to say, I was upset because I've been labeled as a 'psych' patient before and my complaints weren't taken seriously.

I had been started on Buspar for anxiety and it was stopped as well bc it might of been why my symptoms of memory and concentration were worsening.

He called and said the MRI was okay and believes that some of my problems were caused by medication.

So, now I am on medical leave until more testing is done.

I know I am not crazy and I'm not making up these symptoms. I am not nearly falling on purpose nor am I doing it for attention. I just know these symptoms ARE NOT normal for someone my age.

I'm sorry this is so long. Any advice is appreciated.

[tomas2729]

I am sorry to hear that you are experiencing any symptoms at all. They are no fun for sure....

Have you considered getting a second opinion? How about having an MRI with contrast? There is always the possibility of asking for a Lumbar Puncture as well.....

I hope that whatever your doctor finds is way less severe than MS.

Best,

Tom

[Lulu54]

Hi and welcome to the group here.  Let's get this out of the way first - what you are describing could very well be caused by drugs or by anxiety.  As a medical person, you already know that.  But it doesn't sound like it to me and definitely not to you - and from what you have written,  I believe you would recognize this problem even if it was happening to your own body.  

To me, it sounds like you need to move out of your close medical circle there and get an independent evaluation.  Regardless of what you have wrong, there is definitely something going on with your health and you need some answers.  

A neuropsych evaluation will not evaluate you for the numbness and near-falls, and I think you know that, too.  You are right about thinking they have labeled your problems mental rather than physical and you may have to do the neuropsych eval just to clear that hurdle.  Unfortunately many people around here have needed to go to the psychiatrist and be cleared there before their neurologist would take their concerns seriously.

Good luck and keep us posted.

[rendean]

HI and welcome Forgiven,

I, too , am a nurse. Lu's advice to move out of your close medical circle is sound. You do need a second opinion and a neuro who willdo the testing for all of the MS mimics. The neuro-psych testing does test coordination and short-term memory so  it may be helpful as a baseline. It will also dispell any anxiety issues other than the anxiety about your unknown health status.

My general neuro sent me to 5 different neuros and I saw 2 more Neuro-opths abefore getting a dx. Please read our HealthPages found to the right of this column. A lot were written by Quix , retired pediatrician with MS. You will find lots of useful information there.

Wishing you luck on your journey and keep us informed on what is happening.

Best,
Ren

[vamanos]

Hey there,
I am so sorry for you, and I understand the frustration you feel.
I wonder why so many patients get the "anxiety" stamp....increasingly, I think it is an easy, lazy way to deal with patients who do not present with easily definable sx's.

I agree with Lulu--clearly it can cause issues.

It is stunning how many patients are brushed off with "Oh, its just stress" as an explanation.
I wonder how many men get told that.

[Ricobord]

One of the MS mimics is Lyme Disease. Unfortunately, the CDC two tier testing protocol misses between 30-50% of actual cases.  Many of us who test false negative have stories like yours, of mysterious neurological symptoms, diagnoses of CFS or Fibromyalgia, and doctors' suggestions that without clear test results, it must be stress or anxiety.

There is definitely Lyme in the south. It is underdiagnosed and under reported there, much to the misery of patients who get it.  Some doctors have said that patients who get it in the south are more likely to test false negative, perhaps because of differing genetic strains there.

Before you exclude Lyme, I'd encourage you to see an LLMD, a Lyme Literate Medical Doctor, and to get tested at IGeneX, a specialty lab that does more advanced testing.  I tested positive there after testing negative twice at another lab. You are also welcome to come post on the Lyme forum.