Do I have MS?

[KymL]

For about 3 years I have been experiencing severe facial pain, pressure in the left side of my head, occasional numbness in my arms, legs and face (and very occasional tremors), occasional stabbing pains in my arms and legs, occasional stiffness in my legs (mostly ankles - so I can barely walk), hard time concentrating, dropping things, tinitus, night sweats, increased urination (both these have been written off due to my age - now 40) and way more.  I have been to several docs but no help (even the Mayo) or diagnosis.  They either say stress (which I have almost none except this!) or a "nerve disorder" of unknown origin.  My symptoms are worse in summer when hot and everything seems to be steadily getting worse with time.  My MRI turned out normal however.  Could this still be MS..any recommendations for docs to see in St.Paul/Mpls area??  I obviously do not want this to be MS but I NEED an answer...it is driving me crazy and my quality of life is suffering badly.  Thanks  for your help!

[Lulu54]

Hi and welcome to MedHelp.  There is a very active PATIENT run forum here that will be happy to help with your question while you wait for an expert to respond.  We can be found at

http://www.medhelp.org/forums/Multiple-Sclerosis/show/41

You may want to copy your question from here and post it there!

my best,
Lulu

[Garciamom]

I have had 4 abnormal MRIs. They found white spots or lesions in my brain.They thought i had MS. I also had a lumbar puncture, evoked potential,and a full neck and spine MRI which all came back negative for lesions and MS. Thats what I was told by my neurologist. I do also have  Migraines, high blood pressure, Diabetes type 2 , Hypothyroidism, Fibromyalgia, and severe feet pain, and probably some nuropathy in my legs and feet. I have lots of memory loss, short term specially. I have trouble making everyday simple decisions, my speech is affected. I am fatigued constantly, tired all the time, and am afraid to go out alone. I have fallen down a couple times, but not recently. My quality of life is not good for being only 47 yrs. old. I have been told that some of the lesions or white spots have gone and some new ones have come. And I have been told that the spots are still there too. I have also been told that I do not have any autoimmune diseases. I feel like i am going crazy! What could possible be worng with me? Could I still have MS? Or maybe something else? I have had so many tests done and no one seems to know what wrong with me! Can you help me???

[Garciamom]

Hi,
Can you please tell me how do I go about asking my own quetion in here? Where do I go to submitt it? I am new to this site and I think I am posting my questions in the wrong places. Can you please help me? Thank you very much! :)

[tjj3761]

Hi,

Sorry to hear about your suffering.  I too in 2003 started with similar symptoms as yours.

I started having what I thought was "tooth pain" on the right side of my face off and on.  Then I went to the dentist and had a molar pulled which "immediately" had shocking right-sided facial pain afterwards and then everything went downhill from there.

I started having blurred vision, right-sided body numbness, on and on.  I then started having severe shocking right-sided stabbing facial pain (trigeminal neuralgia) supposedly.  I then went to a neurologist and he eventually started me on Neurontin or gabapentin (generic name) which is typically for seizures but "THIS HELPED SO MUCH" with high doses and now I rarely only get twinges of pain.  I tried to get off this now 6 years later but cannot or it gets worse.

Just from my experience of still being in limboland, I would continue to pursue and pursue for your diagnoses.  I truly believe Neurontin would help you and it is a relatively cheap script.

We all know how scary this can be and the feeling of being helpless but YOU ARE NOT ALONE!

Keep in touch and let me know how things are going for you.

Terri

[KymL]

Thanks so much for your input!  I too was on Gabapentin but the side effects from it (severe back pain) have been so severe that I am trying to wean off it now.  It did tone dowwn my pain some but not all the way.  The choice was everyday pain or flair ups of pain.  Ugg!!!
Dr. Kantor did help me get set up with a doc here in the Twin Cities and I am sso greatful!!!!  Now that I am coming off the gabapentin, I am going to record all my symptoms each day and see the pattern and what was gabapentin and what was my condition.  Maybe this doc can figure out what is wrong.  If I need to go back on gabapentin, so be it but figured I would staart "clean" for this new doc opportunity.
Thanks so much again for you help!

[Juneflower]

I have 2 lesions on my MRI which the doctor does not know for sure what they are. He said there was a possibility one was an acoustic neuroma but they did this ear test which was negative. I have significant dizziness (not vertigo), more like a swaying. I have numbness,pain and tingling on the left side of my face. Over the past year I have had tremors, trouble speaking clearly, clumsiness and I am constantly tired. My spinal tap was negative so he just threw up his hands and now I have no diagnosis. It is affecting my job. Help

[mamamichelle]

Wow...reading this makes me feel like I'm not alone! I'm 44 and have been having terrible headaches for about 5years..first my doc said hormonal so had me on bc pills all month wtih no break for my p. Then when that didnt work they said it was stress and gave me meds that didnt work..now I am having auras, seeing white and blue flashes of light, and tingling and tremors in my left hand and tingling in my left jaw. Plus the terrible headaches that last all day or days on end..so now my new doc takes me off the pill saying I could have a stroke..omg. And gives me Treximet and Meximelt which of niether works..so I finally called last Fri and told doc I need a referral to a neurologist since this is also affecting my job and my life. I'm a busy active mom and manager of a call center...I cant function this way. Do I have MS or what? Its so scary. I also have short term memory loss..went to the market on Saturday and just stood in the produce isle and had no idea what I was there to buy..I am NEVER like that and it made me angry and sad. I'm forgetting to pay bills and do tasks at work.  Please tell me what all of you find out..I'm praying for you

[ericadawn98]

I am 29.  I have been having numbness in my fingers and toes, also in my lips.  I have tingling or crawling sensations in my scalp.  I can't take a shower because the when the water touches my back I have a tingling sensations.  I have been diagnosed with dysautonomia due to other issues that I have such as anxiety, heart palpitations, etc.  When I saw my GP 2 weeks ago to discuss the numbness.  He mentioned MS and wanted and MRI done.  The MRI came back normal, however he still wants me to see a nuerologist and have a Lumbar puncture.  Oh I forgot to mention the  weakness in my legs, the extreme eye pain and dizziness.  Is it possible to have MS with a normal MRI.

[mamamichelle]

Hi,
Can you explain your eye pain? I went to the doc for my headaches which really feel like severe pain behind my eyes...like someone is pulling my eyes out. Plus I have the leg weakness and dizziness. I have not yet had my MRI but seeing you mention the eye pain made me want to talk to you. You can message me direclty if you want. I dont have the tingling scalp or back. My doc thought i had migraines but none of the migraine meds worked for me.

[ericadawn98]

I have the short term memory loss as well.  It is so aggrivating!  I have tried to kind of keep it to myself, but my husband has really noticed it.  He will tell me to pick up something at the store, and I will have to call him from the store and ask him again what it was he wanted.

[ellen20]

A related discussion, Different feeling in my legs was started.

[LaylaAnne]

A related discussion, awaiting diagnosis was started.

[Jan101]

A related discussion, Have you guys had a Spinal Tap along with the MRI? was started.

[patypixie]

A related discussion, young and worried was started.