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Confusing Neuro letter - opinions appreciated

Hi, I posted a couple of weeks ago regarding my follow-up Neuro appoint after lumbar puncture. This is my 3rd Neuro appoint since symptoms started in late Jan 13. Didn’t find any oligoclonal bands but consultant was still baffled when her performed tests on me. Have today received his letter regarding my last appointment & confused as to what it all means and somewhat shocked that I’ve been discharged from the clinic after initial symptoms started in Jan13 & have been ongoing… this discharge was not mentioned whilst I was there!! Letters reads as follows Today I reviewed this pleasant lady who was suspected to have demyelinating process in the cns. MRI of the brain & whole spine showed a small disc at C5-.6 which is narrowing the left C6 exit canal. CSF cells were normal and negative for oligoclonal bands - raised protein at 0.56 but it is doubtful this is of any significance. Her vision, speech & swallowing are fine - she has had spells of bladder frequency & ongoing severe constipation. Physical examination: alert, aware & orientated. Has decreased sensitivity to touch, pain & vibration on all the left side Power was 5/5 except slightly weaker left hip flexion was 4+/5. Tendon reflexes were briskish but definitely were higher on the lower limbs. I was able to elicit bilateral ankle clonus and bitlateral Plantars were up going Rombergs sign was slightly positive but gait looked ok. Taking into consideration all of the facts at this stage it is very difficult to say why she has the neurological symptoms disregarding normal examinations. Therefore I made a decision to send her for repeat MRI scan after 6 months and made a referral for visual evoke potential & some other sensory evoke potentials. Further I decided to check her B12 & folates. At the moment I don’t see any reason to keep her in the clinic therefore she was discharged. If the tests show any abnormalities I will arrange for her to be seen again. If anyone could explain this letter in layman’s terms I would appreciate it - especially increased proteins??? Should I just carry on or get a 2nd opinion…I’ve never felt so strongly that something is not right with my body but now feel that they are saying nothing is wrong with me

Sorry forgot to say had a wide variety of bloods done also by docs- thyroid all ok but muscle enzyme was low & iron slightly too??

Hi,

It must be very upsetting/frustrating to be told you’re discharged by letter rather then in person. I guess he’s unsure of what your symptoms suggest and he’s keeping your case open at present with the follow-up tests.

CSF is the fluid they took off your spine. There are proteins in all of your bodily fluids and there are certain limits for the amount that is normal. Your’s were slightly higher then usual but not high enough for him to think it was anything to worry about.

The power paragraph refers to your movement and reflexes.

I’m not a medical professional but work as a dietitian hence my limited understanding.

I hope that helps?

Wishing you an answer to your symptoms soon.

x

Hi there, your lumbar puncture and MRI does not indicate that you have MS. Althought you do seem to have neurological symptoms such as a postive babinski reflex (toe going up - it should go down in a normal examination). This is a sign that there is something . wrong with your spinal cord - this could be the disc problem that was mentioned. The other symptoms you mentioned also indicate spinal cord. Disk problems were a disc presses on the spinal cord can cause neuro problems and can be fixed surgically probably by a neuro/orthopedic surgeon.

Can I ask if you have had any symtoms above the neck - such as vision issues, numb face. That is one of the things that my neuro asked me. I had a problem on my cervical neck and a clear LP. Neuro said MS unlikely due to clear LP, clear brain MRI and no symptoms neck up. My neck lesion cleared up on MRI but I am still left with a bit of spasticity/weakness on right hand side.

Moyna xxx

Thanks for reply - I’ve had blurred/double vision a couple of times, flashing lights/flashes in my eyes & several migraines over the last 3months. I’ve had migraines since my teens. I’ve had dizziness, tripping over - usually my left foot / balance problems also - which resulted in me falling down some stairs. That was frightening & grabbed hold of the banister with my dodgy left hand for dear life - all of a sudden I realised I was in the midst of falling down the stairs. Kindly appreciate your reply - I might ask further regarding spine MRI as its not been mentioned in meeting with the different Neuro consultants. Angeleyes

Hi Moyna, Any ideas on what the slightly increase in proteins mean - is this due to infection/inflammation in the spinal cord?? Sorry - wish Neuro letters would speak to you in plain English!! :slight_smile:

The vision issues are probably due to migraines especially if you have not had numbness or sharp pains on the face. High protein in CSF is usually seen in types of meningitis - which you obviously dont have. It can also appear in hypothryoidism so get blood tests to your thyroid. I dont think it is common in MS. There is a blog called MS barts blog and the Prof on there who as devoted his whole career to MS research has doubts about whether a person can have MS without a postive lumbar puncture.The test is also more likely to give false positives (ie positive LP with no ms) than a false negative (neg LP to someone who has MS). Some people dont have a LP because the evidence based on MRI alone is enough for a dx.

Moyna xxx