Demoralized and Discouraged without Diagnosis

Hi, my name is Lois and I live in eastern Michigan. I have been ill for about a year now but didn't begin trying to find answers until October of 2009. I have had so many tests, and have seen so many doctors that I feel belittled and demoralized. No one has called me a hypochondriac but I wonder at times if they might think that.  Also, my predicament is not the fault of any doctor or myself, it is very disheartening.  I have met some wonderful doctors along this path.

I would so appreciate it if any of you could offer any suggestions or point me in a different direction I would be so grateful.  Of course I don't know that I have MS, its just a gut instinct right now. I have to use a rollator when I go out due to difficulties with balance and depth perception.

I will make this brief:

July 09
Numbness of chin, flushing, extreme fatigue and probs with cognition, intermittent dizzy

September
electric shock feeling when my head is moved a certain way

October
Pain begins in upper right quadrant and continues in numerous areas of body

February
I notice that much of my trunk torso totally numb
twitches spasms begin in legs
exacerbation imbalance and depth perception problems

March
Began falling

I have had many tests and several doctors but I won't bore you with all of that. Here are the things we know so far:

vitamin b12 deficiency (230)---giving myself shots
Chiari Malformation I--5mm on left and 3mm on right
MRI--Multiple scattered bilateral periventricular areas of increased intensity on
blood tests continue to show mild inflammation crp and erp


Rheumatologist says I currently have Polyarticular Fibro (becuase the blood levels in positive Lupus test iaren't high enough?) though he says I need to a second opinion from a different neurologist. He says to have my PCP do a referral and suggests looking in the phone book for a neurologist as I live in a different city than he does.

My Spine Specialist says to get another neurologist to deal with the areas of intensity.

The first and only neuro I saw spent 10 minutes with me, ordered tons of MRI's and said "you don't need to call, we will call you".  Two weeks later her secy called and said "everything is fine and you don't need to come back".     I never saw her again.  

I picked up my MRI results myself. I have never had anyone tell me what the results mean.

Currently unable to complete all my adl's without great effort. Must use a walker outside and a chair with wheels inside if I have to walk too much because of weakness. Can't buy my own groceries unless I use their elec. cart. Pain, mild headaches, tired eyes, intense fatigue, legs twitch and spasm.

current tx.
Tramadol
Neurontin
flexeril
Physical therapy
Klonipin (klonopin)
NSAIDS

I don't know where to go and frankly don't feel that I can try anymore.

I just can't go to another doctor to be shuffled around and I am too tired to be my own advocate  anymore

I can’t ask my PCP for another referral, particularly when I want the referral to the University of Michigan

thank you

lois

[Londres70]

PLEASE, PLEASE, PLEASE post in the Chiari Forum.  Has anyone ever investigated into your Chiari Malformation?  Your situation sounds alot like the Chiari Forum's posts.  They might be able to guide you.  Ask selmaS or cmoeller; they seem to answer the most posts and are very informed too.

[coco31]

I understand your predictiment and frustration. Having an actual diagnosis means a lot. It means you have treatment options, you can make plans for the future and begin to adapt things in your life to live as normally as ppossible with MS. Its a tough and very long road for most who await an MS diagnosis. I too myself just had that niggiling - that feeling that all was not well. My vision blurred and I was so caught up in reading twilight that every time I bent my neck I got a shock but it never once occured to me that MS was a possibility. A week later I got worse, I went to my GP 3 times before seeing a nuerologist and having a positive MRI "highly suggestive of MS". You very obviously have symptoms whether they point to MS or not I cannot say but certainly these are symtpoms not to be ignored. For peace of mind I would strongly suggest seeking a second opinion and pay the money for a radiologist to sit and go through your MRI for reassurance. All the best.

Sharon

[Bob368]

I'm very sorry for what you are going through, I've been there. Try copying and pasting your post in the Multiple Sclerosis forum, NOT the doctors forum. There is a lot of members who can give you much information and directions to take.

Good Luck,

Bob :)

[RedFlame]

Thanks for the encouragement!  It helps to know that you have all been there.  I will post on Chiari as well as MS.  Thanks for the support

[RedFlame]

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