Lesions but clear lumbar

New diagnosis and before diagnosis
1

Hi all, I am new to this forum but hoping others experiences can help me to understand where my diagnosis is going.

In a short recap of my medical history, have had pins and needles in my hands and feet for a number of years, was initially told it was carpol tunnel. However symptoms got worse over the years and ended up with numbness in my arms, heavy feeling in all limbs, falling over all the time and dropping everything.

Went back to my docs and had nerve conduction tests - neuro surgeon said that there was slowness in signal but based on other symptoms he wanted to refer me to neurologist.

I had a great neurologist who I explained all symptoms to - she asked lots of questions and did a few tests there and then and then instantly sent me for an MRI scan. MRI confirmed lesions on the brain. I had of course started to google symptoms and by this time was pretty sure myself that it was MS. Neurologist then sent me for lumbar puncture. Her words were " i am almost 100% sure this is MS but want to do a lumbar puncture to connect all the dots"

After the most horrendous lumbar puncture procedure (almost 4 hours bent over whilst they tried to get the tap in) my GP and I received a letter from another neurologist who said that lumbar was clear and that he did not believe it was MS. He advised that migraines I had had as a teen (i m now 38) were the cause of the lesions and that the symptoms I was currently experiencing are secondary to the migraines. This neuro has never seen me and has written off the diagnosis my first neuro had provided based on lumbar only. It turns out my old neurololgist has now left and this other guy is my new point of contact.

As I said i had migraines in my teens but they are very rare now. I now get headache pain at the back of my head near my neck and my eyes are sensitive esp to the light) but not like with a migraine.

I was devastated (i thought i was close to getting some help and support) and went back to my doctors. The dr was furious that this neuro could make this diagnosis without even seeing me and has written to him to say so. I have a follow up appt in Feb, where I am taking a full diary of my symptoms that I am having on a daily basis in the hopes that I can prove to him that my symptoms are not secondary, but are life changing.

I have had to change my car so that I have an automatic with adaptive cruise control as my legs go numb if i drive for too long. I can’t do the weekly shop anymore as I get too tired, I can’t walk my dogs or run in the park with my kids as i get too tired. I cut my hands and burn myself on the oven most days as I do not feel the heat and I have dropped more crockery and glasses in the last year I have lost count. If anything is on the side my arms are like a magnet and seem to knock it off!! I can’t walk up the stairs to my bedroom without feeling exhausted at the end of it…These symptoms are not in my head and have changed and are changing my life all the time.

Has anyone else had mri showing lesions and then a clear lumbar? I just don’t know where to go from here

(sorry that wasn’t short at all was it!)

2

I think a clear LP means you don’t have MS…as the Neuro said.

The first neuro was not 100% sure, that’s why a LP was needed…which showed negative results.

You haven’t long to wait for your next appointment in February, sorry to say it’s just a matter of having lots of tests & then waiting for results.

Good luck.

Rosina

3

Hello

What a horrible time you’ve been having. Quite how a neurologist can rule MS out on the basis of a lumbar puncture, I don’t know. Have a look at https://www.mstrust.org.uk/a-z/lumbar-puncture The MS Trust provide reliable information so can be trusted. Within this webpage, it explains that 80 to 95% of people with MS test positive for Oligoclonal bands on their lumbar puncture. Forgive my maths, but I read this as up to 20% of people with MS test negative.

So testing negative for one test isn’t the same as testing negative for MS (unless it’s a complete head and full spine MRI scan).

I don’t know if you should take this as positive news of not. Many people would find it more frightening than reassuring. But if you’ve suffered symptom after symptom that could be explained by one diagnosis, failing to be diagnosed is more fearful than being diagnosed.

I think that having a complete diary to take with you to your next appointment is a good plan. Don’t expect to be able to go through absolutely every symptoms one by one. Your neurologist will have his own way of conducting an examination. So long as he does a physical examination you shouldn’t have too much to worry about. He will have your previous neurological examination, MRI examinations, other test results and his own examination to go by in addition to your history.

You may want to keep in mind the McDonald Criteria for diagnosing MS. Have a look at https://www.mstrust.org.uk/a-z/lumbar-puncture This states that for MS diagnosis, what’s needed is dissemination in time and place. To show this, an LP can be used, but it’s not required.

Best of luck for your next appointment, hopefully you can develop more faith in this neurologist following that.

Sue

1 Like
4

You keep going, as sssue said a negative LP doesn’t necessarily mean you dont have MS, you may have PPMS. If you have had issues with your eyes at all ask you doctor if you can have VEP test. I had one in 2008, and one in 2015, first one positive bilaterally, and second one positive with higher score. which got me diagnosed. I had a negative LP although I had o bands, my blood taken at the same time had something in it which negated a result of MS, and over time i had at least 3 clear lesions in different areas of my spine.

I was diagnosed in 2016 early. with progressive MS. so perhaps i am one of the 20% i have met others with PPMS too who have had negative LPS

16 years it took from first symptom 2000.

5

p.s. WHAT about all the people who never have LP but still get diagnosed with MS?

1 Like
6

My sister’s lumbar punch came back as negative when she first showed signs of MS, 20 years on and absolutely taken over by MS, how useless that test turned out to be !!

1 Like