Hi, I’m 50 and very nervous on what’s going on. I started having episodes with right hand twitching about a year ago. Then about 6 months ago I would have episodes when my right hand would loose muscle strength at times, my usually nice handwriting looked like chicken scratch & trouble grasphing things and once in a while I would get this strange feeling in my right thigh and my leg would feel very heavy if I tried to walk. This happens on and off. I’ve had an oeric migraine a while back and numerous issues with bloodshot eyes for no reason. Bladder issues, trouble searching for words and mixing them up sometimes. I’ve had an EEG, EMG, spinal tap and 3 MRI’s. All tests have come back normal except the MRI showed white dots. My Dr. wants another special MRI to get a different look at my brain and then a consult with a neurosurgeon. My Dr. said today that I did not have MS because my spinal tap was normal. Is this true? From what I’m reading it does not totally rule out MS?
Hi bbdarc x
I would treat the ‘you do not have MS’ because your spinal tap is normal with caution. I’m no expert but MS is diagnosed by the result of several tests - not just on the basis that ‘one is normal’. Not everyone with MS has an abnormal Lumbar Puncture result just as not everyone with MS has lesions showing on their MRI - well not initially anyway! My MRI for example showed lesions - but not in the right place. I have the symptoms and ‘clinical’ signs - ie abnormal tests when they do the neurological examination etc
My doctor has told me that as far as they are concerned most things have now been ruled out and it’s ‘probable MS’ and that sometimes these things take time to show up on things like MRI’s - so it’s a wait & see for me
Hope you get some answers soon xxxjenxx
Hi bbdarc, sorry you’ve been having such a rough time.
MS can be very difficult to dx. There is not one single test but they put a lot of info together to try and dx… a bit like putting a puzzle together. LP result is one of the pieces of the puzzle. Sometimes people can get a dx without a positive LP… or they get a ‘possible MS’ or ‘probable MS’ dx.
There are many conditions that have similar symptoms to MS and many of those can also be difficult to dx.
It’s good your doctor isn’t giving up and is doing another MRI. They perhaps want to do a ‘with contrast’ MRI… this is when they inject you with something that can show lesions up better.
I know it’s very frustrating having symptoms and no dx (as many people on here know). Just try and take it ‘one day at a time’.
Take care and hope you get some answers soon,
Pat x
Hello and welcome to the site
I’m with Teresa and Pat. MS requires putting together lots of bits of information, but no single test can definitely rule MS in or out so I’m not sure why your doctor said that about the lumbar puncture / spinal tap.
There are actually a lot of causes of “white dots” (lesions) in the brain, including things like vitamin deficiencies, migraine, genetic conditions and of course MS. What lesions look like on different types of scan as well as where they are usually narrows possible causes down, but it can be very tricky.
It would normally be more appropriate to refer a patient with brain lesions to a neurologist than a neurosurgeon. Is the doctor you refer to a neurologist? If not, then I think I would be asking why a neurosurgeon, if I were you.
Btw, according to the literature, there is anything between about 5-20% of people with MS who do not have a positive LP result. Techniques are probably better now than when some of these numbers were calculated, but it is safe to assume that at least 5% of people with MS do not have a positive LP result.
I hope the new scan isn’t too long in coming, and that it helps get you some answers.
Karen x
Hi,
I am similar age to you (48). I had a numb arm 6 years ago which lasted a few weeks and had clear MRI and clear LP. Then 4 years ago I felt very ill and devloped neuro symptoms. Stress the GP called it and thankfully got betterish. Then 2 years ago spasticity started in my leg. It started with on and off heavyness in right leg and right arm. The arm has stopped giving bother but the leg is just getting stiffer. Anyway I had an MRI in Jan 2011 which showed one lesion/spinal atrophy in cervical spine only. No spots in brain. Neuro said it was damage from radiation treatment I had received 22 years ago, Anyway I moved to NHS and saw another neuro who thought MS was more likely. Had another MRI and no new lesions were seen. I then had a LP which was clear. He told me that 95% of pwms will have a positive LP and given that I only have one lesion and a clear LP then MS looks less likely but not out of the question. He did however say that we get spots as we age and depending upon were these spots are symptoms can be seen. 50 is not old though. My father in law has exagerated reflexes and pins and needles etc and has be told that the central nervous system deteriorates with age and symtoms like these are common. Mind you he is 87.
Personnally, I would take the negative LP positively. Look at the glass full not empty. I dont have MS as my LP was clear. Keep moving forward with positive thoughts.
Moyna x
Thank you to all that have responded! I have been seeing a neurologist and because she can’t pinpoint what i have she has referred me to a neurosurgeon. I am scheduled for another MRI that he wants to use to do a biopsy the next week. I am getting a second opinion before they cut into my brain by a much bigger hospital with more than one neurosurgeon on staff.
I cannot see what a neurosurgeon could add - they are surgeons, not neurologists and white dots plural does not suggest a surgical problem. Like you, I would certainly be asking for a second opinion from another neurologist before agreeing to a biopsy. And I would want that opinion from someone who knows that an LP is not always positive in MS! Sorry, just realised that the neurosurgeon referral is for the biopsy. That makes more sense! Have they told you what they are expecting to find? That is, what the working hypothesis is? It would be very unusual to be doing a biopsy if its MS - there’s no justification. Kx
When I talked with the neurosurgeon yesterday I asked him about having the symptoms with a normal spinal tap and reading that it doesn’t always rule ms out and he agreed. But they are looking for cancer now so I asked with all the test and blood work done wouldn’t that have showed up and he said most of the time but not always. I’m def getting second opinion. But his entire attitude was very disturbing. I’ve never met this man and I had questions (this is all done over the phone) and I started to explain what I’ve been going through symptom wise and he cut me off and said I know I read your file. He said I don’t want you to feel pressured then when I said I didn’t want to do anything until after christmas he said well you will have to wait until jan and do you really want to do that. Then after talking with his assistant she tells me he is going on a holiday vacation. It is just him in this practice and it’s a small hospital. So i’m going to a much bigger hopsital that has 5 on staff and much more up to date treatments. I’m not going to be pushed into doing something so quickly without talking to more drs. because someone is going on vacation. I know they are trying to rule things out but I want to hear all my options before someone cuts into me. It’s not a simple procedure about a dime size hole in my head. Trying to stay positive. 
Thanks all!