Aa
Diagnosis
Hello,
I am new to this forum and have actually never posted on ANY forum but I'm to the point of frustration. I have had now two "rounds" of neurological symptoms. Both have followed a fairly severe viral herpes outbreak (one with flu symptoms and a cold sore; one was herpes esophigitis...both knocked me on my butt pretty good).
The first round included numbness tingling, brain fog, severe muscle jerks while sleeping, some strange facial numbness and itching, minor bladder overactivity, mild drop foot, and some right arm weakness. Checked it out with a neurologist (MS specialist). She ordered a brain MRI and it came back clear. That, combined with a perfect neuro exam led her to say NO MS. (I was also tested for Lyme's, B12, etc. which was all negative.)
Fast forward another month or two (and right after the esophigitis) and the symptoms came back again. This time they were a little different and a little more severe. First I noticed brain fog again (word recall), and just kind of a "fuzzy" feeling. Then my left eye went blurry and had mild pain behind it for about a week (went to ophthalmologist who deemed me normal). As soon as I felt like my left eye was back to normal, a similar thing happened in my right eye.
Then my bladder went nuts. I was probably peeing 20 times per day and always had the urgency feeling. This has calmed down a bit, but I'm definitely still going more than average.
The symptom that has scared me the most though is the leg stiffness. Both legs (although more on the right) have been so, so stiff for about a month now. I can walk and even jog, but the stiffness is very noticeable. All I can do to make it feel better is stretch, however this hasn't "cured" it by any means. At times my muscles have been so tight that I can literally feel it through my skin when I touch them.
My neurologist refused to do any more MRIs after I told her of this latest round of symptoms. So I went to my GP and she ordered all spine MRIs and a repeat brain MRI (all with and w/o contrast).
I just got the results back today and they said NO SIGNIFICANT FINDINGS. My GP's note said "No evidence of MS."
I am floored. How is this possible? These symptoms and the way they came on seem textbook MS. I cannot get my head around this NOT being MS. (And to be clear, I do not want MS of course, but I also don't want to delay treatment if it is MS.)
So I guess my question is: Even with all clear MRIs, could this still be MS? (For the record, my scans were done on very high powered machines so hopefully there were no missed lesions, inflammation, etc.)
Thank you for reading this long post and for any feedback you can provide. I have high anxiety with these symptoms and I just don't think I can rest easy despite these MRI results.
I am new to this forum and have actually never posted on ANY forum but I'm to the point of frustration. I have had now two "rounds" of neurological symptoms. Both have followed a fairly severe viral herpes outbreak (one with flu symptoms and a cold sore; one was herpes esophigitis...both knocked me on my butt pretty good).
The first round included numbness tingling, brain fog, severe muscle jerks while sleeping, some strange facial numbness and itching, minor bladder overactivity, mild drop foot, and some right arm weakness. Checked it out with a neurologist (MS specialist). She ordered a brain MRI and it came back clear. That, combined with a perfect neuro exam led her to say NO MS. (I was also tested for Lyme's, B12, etc. which was all negative.)
Fast forward another month or two (and right after the esophigitis) and the symptoms came back again. This time they were a little different and a little more severe. First I noticed brain fog again (word recall), and just kind of a "fuzzy" feeling. Then my left eye went blurry and had mild pain behind it for about a week (went to ophthalmologist who deemed me normal). As soon as I felt like my left eye was back to normal, a similar thing happened in my right eye.
Then my bladder went nuts. I was probably peeing 20 times per day and always had the urgency feeling. This has calmed down a bit, but I'm definitely still going more than average.
The symptom that has scared me the most though is the leg stiffness. Both legs (although more on the right) have been so, so stiff for about a month now. I can walk and even jog, but the stiffness is very noticeable. All I can do to make it feel better is stretch, however this hasn't "cured" it by any means. At times my muscles have been so tight that I can literally feel it through my skin when I touch them.
My neurologist refused to do any more MRIs after I told her of this latest round of symptoms. So I went to my GP and she ordered all spine MRIs and a repeat brain MRI (all with and w/o contrast).
I just got the results back today and they said NO SIGNIFICANT FINDINGS. My GP's note said "No evidence of MS."
I am floored. How is this possible? These symptoms and the way they came on seem textbook MS. I cannot get my head around this NOT being MS. (And to be clear, I do not want MS of course, but I also don't want to delay treatment if it is MS.)
So I guess my question is: Even with all clear MRIs, could this still be MS? (For the record, my scans were done on very high powered machines so hopefully there were no missed lesions, inflammation, etc.)
Thank you for reading this long post and for any feedback you can provide. I have high anxiety with these symptoms and I just don't think I can rest easy despite these MRI results.
Doctors can investigate a patient's symptoms, however if no objective evidence confirms them or points in a particular direction, their hands are tied. However, while you're still trying to get to the bottom of things, they should be offering you treatment for your symptoms as Alex says.
In addition to Baclofen, they should be offering you a plan to treat your anxiety. At this stage, it doesn't seem like what you're experiencing is consistent with MS.
In addition to Baclofen, they should be offering you a plan to treat your anxiety. At this stage, it doesn't seem like what you're experiencing is consistent with MS.
I believe you have something wrong in is a curious case.You can always see another MS Specialist. MS shares symptoms with so many illnesses. I think you will get the same answer from another MS Specialist. The only two eye conditions you can have with MS are double vision and optic neuritis. If you had ever had optic neuritis it would show up on the picture of the back of the eye in an eye exam or a brain MRI from then on. You do not have to have tests done when you have symptoms. The damage with MS occurs with or with out symptoms. If your neurological exam, reflexes and such was normal then it probably is not MS. The neurological exam that is reflexes and such shows more than a MRI. They knew I had double vision and brain stem damage in 1965 before MRIs were invented.
For the leg spasms a GP can put you on muscle relaxants such as Baclofen, You do not have to have a diagnosis to treat symptoms.
If you had MS and had bouts of herpes then the stress could make the MS flair. Otherwise they are not related. Sorry I have no answer.
Alex
For the leg spasms a GP can put you on muscle relaxants such as Baclofen, You do not have to have a diagnosis to treat symptoms.
If you had MS and had bouts of herpes then the stress could make the MS flair. Otherwise they are not related. Sorry I have no answer.
Alex
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