I just had my first LP after 22 years that came back negative. 10 or 12 lesions on my brain and many ms symptoms. However now I have a few more questions. I have blood in my spinal fluid, how does that happen???? Why does that happen??? Also what is MCH and why would that be high??? What do I do about that. I also have had complications since the LP like more numbness and tingling in my face, lips, hands, fingers, feet and toes. I had it before but not to the extreme that I have it now. It is driving me insane. Help....
Hi Suzie, Welcome to this forum. My quesiton is are you an MS patient having had an LP 22 years ago? I am by no means a medical expert on anything but I'm sure others will come along who can share their experiences with you.
A quick check at labtestsonline.org tells me
"MCV, MCH, MCHC, and RDW
These are measurements or calculations related to red blood cells (RBCs) and are components of the Complete Blood Count (CBC), a commonly requested test used for a variety of purposes." You can read more at their website.
I have MS. The lesions were found after a car accident 23 years ago. My symptoms have progressively gotten worse over the years as was to be expected. I wanted to do a clinical trial drug so I needed to have 2 documented flares with a diagnosis. I thought I had an actual diagnosis because of all the lesions on all of the MRI well it turns out that I didn't. Hence, the spinal tap, that comes back negative. So I am spun into limboland with millions of other people, at least I woun't be lonely. However, now do I not have any answers to my MS questions I have more questions like th blood in the spinal fluid. And I can't work because I an unable to due to complications of MS so I am on disability so what do I do now????... My health hasn't changed. I am still unable to work.. I do have another MRI scheduled on Monday. Now so many more unanswered questions.... just for trying to make myself better by trying a better medication and getting free treatment. blah!!!
I'm sorry I didn't see your response sooner - you are the second person tonight I have read that has had a MS dx revoked........ I think when you were dx'd 23 years ago it was much easier for doctors to label it MS because there were no expensive drugs to prescribe. Now with the DMD's they are overly cautious in calling anyone with MS. They have to be accountable for the dollars spent.
Are you familiar with the revised McDonald criteria? We have an easily understandable version in our Health pages, (yellow icon on the upper right side of this page - looks like a stack of papers!) I would be curious as to whether you fit this criteria 23 years ago .
Is it possible that the doctors jumped to the wrong dx and it was never questioned until now and that you have a different neurological disorder? I sure hope the doctor on Monday has some good plan to help you sort this out and get to the true diagnosis ... only then can you get theright drugs to help.
I hope you will keep us informed of your progress.
My best to you, Lulu
Hi, and welcome to the forum from me, too. I am confused also. Are you saying just that you didn't qualify for the Clinical Trial because you had a negative spinal tap?? or that your neurologist actually "revoked" your diagnosis of MS because of it.????!!!
If you "lost" your diagnosis of MS just because the LP was negative, that is ABSURD, and you might need to find a new neurologist. There is NO reuqirement that the LP must be positive in order to diagnose MS. Anywhere from 10 to 15% of people with MS have a negative tap. And there is not even any discussion among the experts that a negative tap should change the assessment of MS based on the proper criteria! So I am hoping that didn't happen.
Have you been on any of the MS meds?
Now about the question of the "MCH." That was not done on the spinal fluid , was it? As Lulu mentioned above, that is a measure of the hemoglobin in the red cells, (Mean Concentration of Hemoglobin) and it is useful in sorting out what kind of anemia someone might have if they are anemic. If they aren't anemic, it isn't all that useful, except to point out some deficiencies. The MCH will be high when there is a deficiency of either folate or Vitamin B12 or both. Your PCP will likely want to check you out for these two things.
A B12 deficency can cause many things that can mimic MS, including brain lesions. So that needs to be checked as soon as possible. The all-over tingling you have had since the LP sounds more like B12 deficiency. That would be a very unusual "reaction" to a spinal tap.
What other symptoms do you suffer from? What have your relapses been like? As Lulu said, depending on how thorough your doctors were in diagnosing you in the beginning, it may be time to be re-evaluated. Also, there is no reason that a person with MS can also have B12 deficiency in addition.
Oooop[s, forgot. How much blood was in your spinal fluid? Blood can be in the test results if the spinal tap needle inadvertently hit a small blood vessel. This is not unusual. Ther is no way to see where the tiny vessels are and you cannot always avoid hitting one. I know this as I have performed at least 600 spinal taps. Sometimes you get blood. A little is not a problem and will not change any of the results much. But, a great deal of blood will invalidate many of the results.
Also, getting a little blood into the spinal fluid (in the body) is not dangerous and the body will take care of getting rid of it.
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