Waiting for possibly final piece to fit. Or not!

New diagnosis and before diagnosis
#1

Hi to everyone,

New user here…I would love to get some advice/get heard on what’s been happening for me since January this year. I’m a 47year old healthcare professional, who has had weird bonkers symptoms for years which I self diagnosed as the start of peri-menopause. Looking back the most significant was almost a year of bladder symptoms, nocturia that could be up to ten times a night, i’m sure you know the type of thing. I’ve always had a lot of pain in my legs and feet but given the physical nature of my job I’ve again put it down to the work, and varicose veins! I also had episodic vertigo and 2 years ago was diagnosed with early onset hearing loss, for which I was given hearing aids. I understand that is likely unrelated to ms though. In 2015 I had a period of incredibly painful swallowing on one side - it was unlike anything i’d ever had through illness and actually reminded me of when I had tonsils removed aged 11. I had a laryngoscopy for this and nothing sinister was found but a biopsy showed elevated white cells.

A couple of years ago I had a mark on my back seen by a dermatologist. It was nothing sinister though I’d explained that I felt a stabbing, burning pain in that area. It was unlike anything i’d ever had before. Months later, when i reached up to scratch my back, there was a massive patch of numbness. I sat on it for a while (a long while actually), until I felt another numb part on the other side of my spine but same level. This took me to the g.p. and thankfully he immediately referred me to Neurology.

I was actually discharged immediately from the consultant as my physical neuro obs were unremarkable. He did however say I should have a brain and spine MRI to be thorough. He sent on a discharge letter to the g.p. and oddly enough the end of it said “she thinks she has MS” (which I found a bit odd really to pass comment on but there you go).

I had the MRI 3 months later and was very shocked to find out it wasn’t normal at all. It showed 1 x 8mm lesion in the right corona radiata and a further smaller lesion. On his report he has written that it may represent CNS inflammation - demylination. There is also a change to the left frontal lobe though it is unsure if that is a vessel.

He actually contacted me to talk about these results because I think he wasn’t at all expecting to see anything based on my neuro obs. He said that they don’t look like a tumour or stroke and feels that perhaps there has been “one definate episode”. But he kind of didn’t really say “you may have MS” even though he has said in his letter that he’s discussed the potential of it…perhaps he has I don’t know. The spinal cord was absolutely fine no lesions at all.

He has decided to get an Opthalmology work up and he has ordered a Lumbar Puncture.

My questions are- is the Lumbar puncture just confirming a diagnosis which he already has decided (reading his letter) that I have? He did explain to me he is looking for Oligoclonal banding.

Another question is - my bloods have ruled out Lyme, Lupus and Rheumatoid arthritis. However they showed that the calcium and white cells were off.

It is also worth mentioning that I’ve now been signed off work for 4 weeks. I have the most incredible pain in my legs and feet that doesn’t get better with rest - as well as toes that keep cramping up. I’ve had pins and needles in both hands and just crashing fatigue. This all came on quite suddenly around 9 days ago - i’ve been working through the lockdown and have felt normal really. But the leg and foot pain in unmanageable.

If you’ve got this far in my post I salute you! Sorry for the bombardment of information. Right now I’m in a limbo state of waiting for an LP which frankly I can’t see coming for over 6 months.

x

#2

Hey Neuro chick

i have to confess that I haven’t properly read all of your post. But think I might have a bit of a gist. I actually refused a lumber puncture as sounded too scarey for me. I was diagnosed with MS from the differences in 2 MRI scans.

Hope this helps

Min xx

#3

Hi Min, oh that is interesting. I was hoping to be offered a second one months or year down the line.

I think it’s difficult because these services aren’t running so often currently due to Covid… x

#4

Sounds like he is looking for “time and space” to fully diagnose you. From your MRI he can’t tell that you have had more than one episode or that you have lesions in 2 distictiv3 areas - so CIS is a likely diagnosis. LP would help add weight to the arguement which could open you up to more drug options. Blood cell readings would be expected with your current live attack.

#5

Dexter thanks so much for replying to me. I’m feeling a bit better actually - less pain and fatigue is getting bettter. My feet are a bit crampy/spasm today but that’s all. I did get a call from my consultant last week as I left a message to say I was taking a bit o time off work. He’s suggested Pregabalin (?) to try to sort out the neuropathic pain and is sending a prescription to the g.p next week. Do you have any experience with that drug at all?

#6

Hi I read your post and you have alot of symptoms like you. I am just waiting on results from my 2nd mri that I had last week. The reason I am replying to your post is to say the lumber puncture is nothing to be scared of. I have had one as well as mri and I actually find the scan scarier. I am a odp working in the operating theatres and we do alot of spinal/epidurals andd lumber punctures within my job role and the secret is to just relax as much as you can. Afterwards you have to remain laying down for 1hr afterwards as you can get a really bad headache. Before I have my lumber puncture another patient told me to have a can of coke (not diet) after your lumber punctures as this will prevent headache too. I’m not sure how the science behind this but I did as she said and I never got a headache. I now go and buy my patients a can of coke when they are in recovery and I have never had a patient with a headache. Don’t be scared, it’s another step of diagnosing your problems

#7

Neurochick I’m in a similar position to you in that I’m still going through the diagnosis for MS. I don’t have the same pain issues that you mention, sorry you have to go through that, but I certainly recognise the other battery of tests that you have had done. On the point of the lumbar puncture my understanding is that yes they are looking for confirmation of lesions as these can be detected form proteins, I think, in the cerebrospinal fluid. It’s not a perfect test, there isn’t one, but it is on the “list” of things that can add up to a diagnosis.

I’ll be honest and say that I found the procedure pretty unpleasant. That was mainly to do with the way my body sometimes goes into the shock response from relatively minor things. Lightheadedness (probably from low blood pressure) and profuse sweating (I looked like I’d just done a serious gym workout my T-Shirt was drenched in sweat) were the two main things. That being said that is something that sometimes happens to me following even minor injuries and I don’t think it is common at all; the Neurologist was pretty concerned and I don’t think he’d ever seen such a reaction. I didn’t get any of the headaches or other common symptoms afterwards, go figure. I agree with sarahmc though when she says don’t be scared it’s part of the diagnosis process.

On the timeline though you might be surprised. Since the lockdown started I’ve been into hospital for an x-ray as part of my diagnosis “journey” so treatment might still be available.