Could this be PPMS

New diagnosis and before diagnosis
1

Good afternoon to you all :-).

I guess this is just to put the feelers out, to see if my symptoms match anyone else’s, as at the moment, its all a bit baffling.

Prior to May 2021, not a care in the world.

5th May 2021 - I had my one and only Covid jab. The AstraZeneca one.

June 2021 - I started to feel extremely sick and shaky in ever increasing intervals. I also started to get a stabbing pain in the centre of my spine. A few days later, the numbness started. It was originally a band around my middle, which spread to eventually encompass everything between my nipples and my feet. After a couple of MRI’s, I was diagnosed with ‘vaccine induced Transverse Myelitis’, just as a couple of participants in the AZ trial did. At no time was there any weakness in any limbs. This dragged on until around December 2021, when the feeling started to return. By Feb 2021, I was all back to normal again, and extremely relieved.

Fast forward to July 2022, and the sick shaky feelings returned. They were worse than ever. The stabbing pain in the back came back too. This time, I didn’t ever get any numbness, just terribly shaky limbs…jelly legs if you like.

This has basically continued to the present day (June 2023). I get bouts of terrible shaky limbs, while at the same time, feeling very sick. Since February of this year, I have a constant and persistent tingling/low key vibrating feeling in some part of my body. Its either in my legs for days, my arms, or in various parts in my head/around my eyes. as I type, my whole head is tingling, and has done for about 3 days. It never stops.

I was sent for a lumbar puncture which failed. The anesthetic didn’t take properly, which resulted in me passing out when the needle hit my spinal cord…that was bloody awful.

Ive recently had the ‘electric test’, where the electrodes were placed on my head, and the current passed through, making my thumbs and toes move, for about 20 minutes per digit. I had an MRI with contrast the same day. I’m stil waiting for the results of both.

Given the length of time since the TM episode, the periodic painful arms and legs, the tingling, and shaking, does this sound like the symptoms of PPMS to anyone?

I’m a 47 year old male if that helps!!

Thank you for taking the time to read my waffle, its much appreciated :slightly_smiling_face:

Matt.

2

Hi Matt

Sorry to hear you’ve been having a rough time. The only person(s) who can really tell you what is going on is your Neurologist, and everyone’s MS is unique to themselves.

I have progressive MS. I have 3 lesions in the brain and 4 in the spinal cord (as of my last round of MRIs). My symptoms tend to arrive gradually and never go away. I have pins & needles/burning throughout the whole of my left side which began with an odd numbness/tingling in my left hand in October 2013 and spread to the rest of my left side increasing in pain level which eventually levelled off after a few years, but has never gone away - I have medication to control the pain. Other symptoms have joined in since then as a result of the spinal lesions.

Hopefully you will get some answers and help with the symptoms soon.

3

Hello Theresa.

Thank you so much for taking the time to reply, I really appreciate it.

Having read through endless posts on this excellent forum, you are spot on. MS seems to be bespoke to an individual. How very thoughtful of it!

As you say, I think I need to just wait and see what happens. Its just the weeks and weeks wait in between having something done, and actually getting the results is so frustrating.

Thank you again for your time. :slight_smile: