Could this be MS?

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carolynvb
Veteran Member


Date Joined Oct 2006
Total Posts : 540
   Posted 10/8/2006 6:40 PM (GMT -6)   
Hi there,
 
I need some help.  I have been unwell for more than  2 months.  It seems my flare up has ended but many of the symptoms are still there.  The symptoms are as follows:
 
headaches, neck pain, hair loss, flushed cheeks, pain in arms and legs, for a period of 3 weeks could barely walk due to joint stiffness and pain, heavy feeling limbs, muscle spasms, fatigue, sleeping issues (think it may just be largely due to my lack of activity) tingling in limbs also hands & feet, numb patches of skin, burning patches, creepy crawly feelings in legs and back(like strange vibrations) dizziness, blurry vision, numbness and pins and needles in legs feet and hands and tremors. My hands have taken on a life of their own and when they are resting my fingers will move on their own spasmig.  It is not painful when they do this but is distrubing.
 
  Before this I was a healthy and active 36 year old. about 2 months ago I realized my arms would get tired fixing my hair or picking up the milk jug.  Then it was difficult for me to get up from sitting or kneeling and things just kept on getting worse.  The worst of the symptoms lasted for about 4 weeks. 
 
My doctor sent me for  MS MRI's and was diagnosed with a meningioma (brain tumor)on the saggital sinus.  To add insult to injury my symptoms I am told are a NOT a result of the tumor which can not be removed until the neurosurgeon feels the "Flare up" is over. Great.....
 
I was tested 2X for lymes the MS MRI did not show lesions on the brain or spine. My EMG was normal.  I am waiting to see another neurologist Nov 1st for further testing.  If this is MS and a spinal tap is done and I am not in a full flare up will the tap still show positive if I have MS?
 
My symptoms change daily and the unbearable pain has gone.  The general day to day living is OK.  I am weak and have pains, muscle spasms and pretty much all the symptoms above other than rolling around on the floor in agony!  I am at a loss. 
The doctor tells me my reflexes are way too strong and my SED rate went from 1-60 in 3 weeks.  My white count bounces not too high but higher than it should be and now my SED rate is down again.
 
I feel as though I am losing my mind.  1 neurologist told me she could not help me my issues are not neurological my own doctor and 2 neurosurgeons seem to think differently. I have been to a rhuematologist(sp?) and he says not arthritic/rhuematic.
 
I am so upset and confused and fearfull that the pain will be like it was....  I am about 2 and a half months into this hell and have no idea what else I can do.  I posted this on the Lymes forum also as I have heard you can sometimes get a positive negative but I am running out of ideas  sad  Does the ANA blood test apply to MS or just other auto immume diseases.  Would I have lesions on spine and brain first time I have a flare up?
 
Any ideas?
 
Thanks,
 
Carolyn, Virginia Beach

Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 10/8/2006 8:44 PM (GMT -6)   
Hi Carolyn,

What a rough few months you've had! Try to hang in there, I hope you find your answer quickly and start to feel better. It sounds like you are exploring all the possibilites which is good.

There are no blood tests specific for MS and most people going through the process will actually have normal bloodwork. When MS is suspected, blood work is done to check for other possibilities. Since you have elevated bloodwork, I'd ask the doctor if there is any other tests that might be run to see why that is.

The MRI's may be normal also in the early stages of the illness, it takes some time for lesions to start appearing. As for the LP, it can show positive results whether you are in a flare or not. Did the doctor bring up doing a LP?

Check back in and let us know how you are doing, and I'm glad you are going in for a second opinion. Good luck and hope you feel better soon!

Kimber
 
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soulflower
Regular Member


Date Joined Oct 2006
Total Posts : 24
   Posted 10/8/2006 9:24 PM (GMT -6)   
"I am so upset and confused and fearfull that the pain will be like it was....  I am about 2 and a half months into this hell and have no idea what else I can do.  I posted this on the Lymes forum also as I have heard you can sometimes get a positive negative but I am running out of ideas  sad  Does the ANA blood test apply to MS or just other auto immume diseases.  Would I have lesions on spine and brain first time I have a flare up?
 
Any ideas?"
 
Hi Carolyn,
 
I am sorry to read about what you are enduring at this time. I hope that you find answers and relief soon.
 
I too was tested for Lyme disease and I finally went to a LLMD (Lyme Literate MD) before I felt absolutely convinced that I did not have lyme. The symptoms of Lyme and MS are so similar and from my understanding both diseases are often misdiagnosed for the other.
 
I was initially diagnosed with Lupus back in 2001. At the time I was sick and had an extremely high ANA and ESR (Sed rate) My Neurologist still isn't sure if I have MS and Lupus or if I just had MS all along. He mentioned that overlapping autoimmune disease can be more than one major disease.
 
Anyways, I asked him about my high ANA. (it's still high but the rest of my lupus panel is negative confused ) My sed rate is still high also. My Neuro told me that a person with MS can indeed have a high ANA, so I guess that explained why the rest of my lupus tests were always negative.
 
Soulflower*

carolynvb
Veteran Member


Date Joined Oct 2006
Total Posts : 540
   Posted 10/9/2006 6:15 AM (GMT -6)   

Thank you for your responses. 

You know the forum helps so much.  It is hard for those around us that love us to really understand.  I know this whole thing has got to be getting old for them.  When asked how I feel I just say OK and move on.  Because I can at least walk people see this improvement (which is a great improvement) and think that I am fine.  The fatigue, aches, tremors etc still continue and I am so darn scared of going back to how things were.  I try to ignore what is going on and carry on as at least I can drive etc. but a walk across a car park can leave me feeling like I need to lay down and take a nap! My headaches are awful, but I think they may be the tumor.  This is only symptom the brain invader is supposed to give me.  I don't know guys.  Through this whole ordeal my biggest fear was this...I would tell the doctors if you do not know what is wrong with me, how do you know that I will wake up one morning and not be able to walk at all? The tumor is not even a thought in my mind really.  This is by far my greatest fear at this point.  A few weeks ago my walking was so bad I should have been in a wheelchair.  I just did not leave my house. 

If there is a next time I need the proper treatment. I was given Neurontin for pain and it barely helped at all. I could live like this if I had to.  I could suck it up, but I cannot go back to the way things were. I have kids and am self employed.  It stole 2 months out of my life.

My doctor has mentioned numerous times that he wants me to have a spinal tap.  I will have to wait until Nov 1st to see if the Neurologist will do one. I am glad to know that I do not need to be in full flare up during the tap for them to get results if this is MS. 

Thank you for everything,

Carolyn


panicky
Regular Member


Date Joined Jun 2006
Total Posts : 163
   Posted 10/9/2006 8:20 AM (GMT -6)   
carolyn, so sorry to hear your troubles, your in the same boat as me same problems muscle and joint pain, numbness and tingling in legs arms fingers and feet, fatigue, swollen neck nodes, itchy skin,pressure in the back of my head i am goin nuts also i hate this i had a lyme hiter done it said negative but i hear them are not accurate and yea you need to see a llmd is what everyone tells me i did have 2 ticks on me in april or may, tested positive for mono, may 1st i also get weird buzzing feelings through my body and sometimes feels like little bugs crawling on me, take care carolyn, hope you get better this been an awful year, im on 27 :-( too many probalems for me
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