Upset and angry

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Ouch1967
New Member


Date Joined Jul 2013
Total Posts : 19
   Posted 5/26/2014 7:12 AM (GMT -6)   
Hi, I am new to this forum but have posted in fibromyalgia forum in the past. I will give you a brief history as I need help please as to what to do.
In July I caught a bad flu virus and two weeks later woke up one morning with both legs numb from the knee down, only for about five minutes. I got up and from then have had really bad leg pain ( like very tight muscles). The pins and needles continued, and then I developed other sensations like things cutting my legs, water running down my legs, lower back pain, pins and needles in hands and arms, headaches and three times I had what has been described as the ms hug. This continued till mid august, then I got really bad again this time I lost my vision in one eye only for about ten minutes but had very blurry eyesight for two weeks along with all the other symptoms. I started getting vertigo as well and the same thing as the ms hug but in was in my lower abdomen, bought me to the floor with tears from pain, this happened three times and then went away. During this time I also got the worst numbness on my scalp, really bad on the side of my head. I also developed weakness in my right side. I forgot the brain fog that has never left me and problems with speech.

In February my vertigo got really bad, got so dizzy I had to lie on the floor on several occasions for about twenty minutes. I got a migraine that lasted three weeks, along with all the other symptoms. The heat made so fatigued, more so than in the past, it was unbearable. The fatigue has always been the worst.

A couple of weeks ago, along with everything else my head starts shaking up and down uncontrollably and my left leg.

I was diagnosed with fibromyalgia and waited for months to see a pain specialist, he told me I should see a neuro. The neuro thought it might be ms (my symptoms are worst during heat and I cannot have hot baths as they make symptoms worse) I have had a MRI of the Brain without contrast and one of the upper spine with contrast. Both were normal so he said I would need a spinal tap. I have had blood tests and apart from low vit D which has been rectified all is normal.

I saw my doc today and she told me the neuro has told her there is nothing wrong with me although he said he wanted to see me next month and put me on a round of steroids if not better.

I am so upset, what is he up to. It has bee ten months and I can't get an answer. I was happy with fibro do and ready to start treatment and now this. I do not want ms but I would like somebody to acknowledge there is so,etching wrong, I have never been depressed and have looked on getting sick with positivity, that I will get treatment and improve. I have so many good things in my life but this is getting me down.

HAS ANYBODY BEEN DIAGNOSED WITHOUT LESIONS? IS IT POSSIBLE TO HAVE MS WITHOUT LESIONS?

And do my symptoms point to something neurological, has anybody had similar experiences?

I wish you all better health and a cure to come soon for ms. I had never really known much about this disease before now but having learnt about it, my hearts go out to you, I know how brave you must be to get through everyday.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3571
   Posted 5/26/2014 9:22 AM (GMT -6)   
I have never personally heard of anyone being diagnosed with MS without lesions. I suppose it can happen. In my opinion, your symptoms don't seem like MS. You have things coming and going quite quickly.

I woke one day to my lower legs being numb. I could walk and move but the skin was numb. That happened 7 years ago. My lower legs are still numb.

My presenting symptom was severe vertigo. It got worse over the course of 4 weeks. I ended up hospitalized for 4 days because I could no longer walk without losing my balance.

My vertigo got better but it has never completely left me. I still feel like I'm on a boat. Every step is a chore so I don't lose my balance and fall.

I lost the sight in my right eye. It did come back, but it took 5 months for that to happen.

You could possibly be in the early stages of MS. We have a member that had several clear MRIs before lesions began to show. He didn't get a diagnosis until they showed up. Often the diagnostic process for MS is long; it can take years.

Hang in there. I hope you get answers soon.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Ouch1967
New Member


Date Joined Jul 2013
Total Posts : 19
   Posted 5/26/2014 9:40 AM (GMT -6)   
Thank you Gretchen,
My symptoms have never left me, it's just a matter of how severe they are. I can have them for weeks settle down and come back again weeks later. Heat, body temp and overdoing things seem to make it worse. I thought the eye thing was unrelated but everything seems to continue with new symptoms when I have something like an attack that makes me unable to function.

I am just frustrated because neuro told me he thought it was ms or TM and he would do a spinal tap and now did a complete turn around without having seen me in between. I just don't know whether to keep wasting my time or just live like this"...........sorry to rant, just feeling really down

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3571
   Posted 5/26/2014 12:14 PM (GMT -6)   
Insist that your neurologist explain why he's stopped following the MS diagnosis. Ask him what he thinks is causing your symptoms and what the next plan of action would be. If he doesn't have any ideas, then it would time for a new doctor/second opinion.

I'm sorry if I misunderstood. You said your legs were numb for 5 minutes then an eye problem for 20 minutes with blurred vision for 2 weeks. I do see that you have long term symptoms to deal with. Ask your doctors what they think is causing this.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.
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