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Demoralized and Discouraged no Diagnosis
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Demoralized and Discouraged no 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.  

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
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5 Comments Post a Comment
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338416_tn?1260996698
Your spine specialist is right - you need to go to another neurologist, one who will look at your hyperintensities with more detail.  With your history of symptoms and an MRI with periventricular lesions, you need to be evaluated for possible MS.

I know it's very difficult to be your own patient advocate, and what's even worse is that when you're sick, it's even more difficult.  Do you have anybody that can help with doctor's visits and making appointments?
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667078_tn?1316004535
Neurologists Specialize in different areas such as headaches or MS. If it were me I would find an MS Specialist. It took me two years and a half a dozen Neurologists for my diagnosis.

Alex
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572651_tn?1333939396
Hi Lois, welcome to the forum here.  I hope you will find lots of useful information and encouragement to not give up.  I will agree with everyone that you need to find another neurologist.  

Is there a reason why you can't ask for the referral to UM?  

If you won't be your own advocate - there is no one else who will do it for you.  I know it gets discouraging because we have  a number of people here who have been through the same maze of doctors and non-diagnosis.  One thing all of them have done is take a timeout to rejuvinate themselves.  Its hard to push through when you are exhausted from the process.  

After you rest, jump back into the battle because you are worth it and you deserve answers.

Welcome again - we'll look for you around here.

Lulu
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1281603_tn?1283802299
my heart goes out to you. I hope you have emotional support at home. In the short time I've been accessing this forum, I've been so impressed with the knowledge and compassion of the members. I too am struggling to find answers- do I push through the pain or will that hurt me, should I be on different meds, the list goes on and on. It's hard when you are exhausted and your mind won't cooperate. It is important not to give up. Sending warm thoughts
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560501_tn?1383616340

   HI there, and I too would like to Welcome you to the Forum :)
   While everyone has pretty much summed it up I just wanted to add that while you do need to be your own / best advocate for you...You also know your body better than anyone and what is normal for you and What is Not!

     Never allow anyone from any medical field (or otherwise) tell you any different or treat you as if your sx are insignificant because they are not!

    Now you do have a couple of things going on with you now as you had mentioned above:

** Are your B-12 Levels where they should be now? Or are you still doing injections? How long ago did you find out about the B-12 Deficiency?
------of course I am sure that you are aware that w/ the B-12 deficiency this can cause some of the sx you mentioned...
      Numbness of chin, flushing, extreme fatigue and probs with cognition, intermittent dizzy, twictching, spams, as well as Balance issues...(can mimic in many ways)
BUT, if your levels are back to normal..this would rule that out!  
      

**Chiari Malformation:
   Do you know what Classification you fall into with yours? ( 1 - 4)
AND, again I know that you are aware of the sx of CM also:
   balance problems, muscle weakness, numbness or other abnormal feelings in the arms or legs, dizziness, vision problems, difficulty swallowing, ringing or buzzing in the ears, hearing loss, vomiting, insomnia, depression, or headache made worse by coughing or straining. Hand coordination and fine motor skills may be affected.

    The reason I am stating all of this is because i am sure that you know and have known your sx of both these conditions and if something has CHANGED from out of the ordinary  for you, then It is Vital that you seek a different Neurologist!!!!

    Perhaps one specific for MS would be the best to help to rule in / out other issues.
I wish you the best, and as Lulu had said, I look foreward in seeing you around and sharing your Journey w/ us as we help each other out through support and encouragement  :)

Take Care,
~Tonya
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