This Is MS Multiple Sclerosis Knowledge & Support Community

Hi, I am new to this forum, I have posted before seeing a neuro but am more confused. 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.
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Research Lyme disease, and in the meantime (while your doctors twiddle their thumbs) research the low-risk/high-reward advice on diet and supplementation found on this forum. Good luck.

hi again sorry you've had no answers so far.

had you seen the following, from when you posted earlier in april? i'm still curious re some of the questions i asked then

edit: http://www.thisisms.com/forum/undiagnos ... ml#p223763
(don't know how i failed to paste this link in when i first made this post!)

Hi Jimmylegs, thank you for your last responses, they have been very helpful. They have ruled out Lyme and everything else. At my last appointment the neuro thought the only possible dis were TM or MS, only a a small possibility as I had shown no lesions but he would do a spinal tap to be sure. Now it seems he's not going to, having told my doc that I am ok and getting better? I have no idea why, I am not getting better. My symptoms persist but were better for a few weeks and then last week it hit me again and got new symptoms and others I have not had in months come back in a bad way. I am really confused about the pattern of ms symptoms but I have been told my symptoms don't fit fibro. Al I really want is an honest answer, if it's a time process let me know if not rule it out, I need something to treat it. Docs will not even give me painkillers, just tell me to take over the counter which do nothing and I am not sleeping at night. I have tried lyrical and gabapentin without success. I have looked at my diet and am and have always been taking the supplements since I first got sick. My blood test showed all ok and fit D was back to normal.

Anyway, thank you so much for your time. Hope you are well.

ok the blood tests can show 'ok' and still be a problem. please read here www.thisisms.com/ftopict-2489.html about the so-called 'normal' range, and see the target levels listed. i'd be interested to see how your results compare.

Hi, there,
I'm in a similar boat -- I posted a question about MRI's and lesions a few weeks ago. Take a look. Feel free to PM me. It's miserable to not have answers. I've been dealing with this for a year now, and still not really getting anywhere. I had a clean brain MRI when all this started, so neuro doesn't know what to do with me. Like you, I'm not getting better, in fact sometimes feel like I'm getting worse. Keep pushing for answers and keep a symptom journal. I hope you feel better soon!

Michele

I can relate as well. My brain MRI was clean and still feeling crappy. My feet always seem to have a numbish feeling and ive had dizzyness and light sensitivity. Im going on 3 months with all of this and just want some answers. I feel your pain ( so to speak) .

Hi jimmy legs,
You are amazing, all the information is amazing. I have not responded as I have not been well. The fatigue, pain and brain fog.......I have been trying to get through all your info and will be going shopping for supplements, I have and take some you mention. My vit D is back to normal, by B12 is ok, I can only take a certain amount of magnesium (upsets stomach).

I did ask about all the blood test, my neuro is an ms specialist, he said they are most indicative tests they can do? I can't get a copy of the results so I can't share with you.

I do have a question...... When I try go to sleep I see flashing lights that seem to change shape and fireworks. Is this normal or something that I should get checked.

I am so confused, my gp seems really concerned, especially since I started getting uncontrollable nodding head and shaking leg when in hot shower. I have also had excruciating pain around my lower stomach, feels like something is squeezing and twisting my insides, brings me to tears and I double over from pain. It lasts around two hours and happens once or twice a day over a few days, this hasn't happened since March. I also got that same thing around my ribs and that hasn't happened since last July.

Thank you so much for all your info so far, I have taken note, as I am not getting any treatment so far.

Hope you are well.

Hadenough wrote:I do have a question...... When I try go to sleep I see flashing lights that seem to change shape and fireworks. Is this normal or something that I should get checked.

It sounds like something you might want to get checked out by an ophthalmologist. Sometimes flashes can be a symptom of problems.

http://www.health.harvard.edu/blog/what ... 1306106336

http://www.kellogg.umich.edu/patientcar ... aters.html

http://www.mayoclinic.org/diseases-cond ... n-20033061

Hi again H, sorry to hear you're having such a bad time with symptoms can you remind where you are located, roughly? trying to figure out what options i could present for possible next steps

hi again
one more thing, now that i am not *quite* as zapped as i was tuesday eve: the *form* of supplemental magnesium is really important. when you take it and have GI trouble, would that be from the mag oxide form?