@Aaron_Paul

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Aaron_Paul

Intro

Hey! I'm Aaron I'm 36 and currently in limbo land. Been having weird sensations in my hands for years and bouts or extreme fatigue but since january this year a whole lot of other weirdness happening to my body. So I'm under investigation and due to the covid 19 situ not getting anywhere fast. So as it stands Im not diagnosed and have a near enough clear brain mri and waiting on my spinal mri results to come back tomorrow. Question How many had a clear or non ms specific matter on brain scan at first? How many have thoracic spine lesions? I've read so much and it's all so contradicting and confusing and I'm all a bit lost with it all! So with a clear brain scan it could be ppms if I have spinal lesions and given my age and the last 4 months with no let up. I would just like my brain to turn off!!! Anyone is a similar situation or would like to chat then HMU

ItsMewithMS

@ItsMewithMS

Hi- Glad you found ShiftMS, there are a lot of people here that can relate to being in Limboland ;-) I had several symptoms over the years that were explained as something else before I had a strange enough symptom that I was referred to a Neuro that was, thankfully, an MS expert that recognized the signs and promptly set me up for an MRI. That was over 15 years ago. Now it is so much easier to research and learn via the internet and one of my favorite sites to do this is Dr Boster's You Tube Channel. He has hundreds of videos and you can find the answers to many questions there. I recently watched one about understanding your MRIs and where lesions were and what symptoms they would cause that was amazingly accurate for me...I have lumbar lesions in just the right spot to explain the footdrop I have. A good initial video is his diagnosis one and you can hunt around from there- https://www.youtube.com/watch?v=0csvVXatlFo There is also great stuff out on the Barts blog and resources in the UK. If nothing else this Covid-19 mess has made us more aware of our global connectiveness and resources available to us. My impact is primarily in my gait and legs so we are probably impacted in different places and different ways but I do know that in the interview that Seb had with "Paleo Boss Lady" she said she was impacted more in her hands. Those are other good You Tube sites to check out - Life of Seb and Paleo Boss. Terry Wahl also has some good material out there on diet and Estim work. But- glad you found Shift MS- I'm sure you will have other people spot your post with ideas and experiences you can relate to ;-)

Vixen

@Vixen

Hi @aaron_paul, great that you've found this site. We all appreciate what it's like to be in limboland, it's just the worst. And obviously, all appointments, MRIs etc are on the back burner due to Covid. So, I am no expert at all. But I can tell you that there's no rhyme or reason to MS. Some people have countless lesions with little symptoms, and some have few lesions are significantly affected. I no that doesn't help you, but don't assume that if you are diagnosed that it will be Primary Progressive. Or otherwise. I have RRMS but, when I had my first relapse that led to diagnosis, the effects lasted months and, to be honest, have never fully gone. It sound cliché to say 'everyone is different' but that's so true! At least you are in the system now, which is great. Most of us receive confirmed diagnosis following a lumbar puncture, so don't be surprised it this is the case for you. Why don't you let us know when you've had the results? Look after yourself. Stay clear of Google; it might not be MS, but if you are going to dig around, stick to sites like this, MS Society or MS Trust. all the best!

Rel12

@Rel12

Hey @aaron_paul + Welcome to the site ! It could definitely be a bit overwhelming especially when waiting on the results of your MRIs. Unfortunately, for me they found a # of lesions on brain, cervical & thoracic spine when I was in the process of finding out why I was getting all of these weird symptoms. After reading so much on MS, I realized that everyone is so different on their journey and I stopped using other peoples stories to help me out with mine. Even with my MRI results, I am doing great compared to what I would read on the internet. Don't freak yourself out and wait to hear from your neuro & stay positive!

chezy17

@chezy17

Hi. Welcome to the site, I had a clear brain scan originally 4 years ago and it was two on my spine that got me diagnosed. I had a relapse that was painful on my left side but it was sensory and I recovered from that. Had a relapse a couple of years later again on my left side which was again sensory and I found it caused a couple of lesions on the brain. Other than fatigue and the occasional numb feeling I'm fine with it. Stress and anxiety can make symptoms worse which I'm finding out now thanks to this stupid viru, not something I've suffered with till now. When my brain went into overdrive I'd exercise, nap or take a walk with my music in my ears, all of which are hard to do at the moment. Google can often be your enemy as there wasn't alot of positive stories around when I was diagnosed and some forums were full of angry people which I understand but can be overwhelming for peeps who have just been diagnosed. This site is full of lovely and helpful people in so you're in a good place 😀. Like others have said, stay positive 👍.

accesscrimea

@accesscrimea

@aaron_paul You say "given my age"... Aren't most PPMS diagnosed in their 40s and 50s?

beky

@beky

Hello and welcome. I was diagnosed 2 years ago at age 31. I initially had a brain ct which was clear then my neurologist referred me for a brain and spine mri. Brain still shows clear and i have 2 C spinal lesions and 1 'area of signal change' Lumber puncture also confirmed diagnosis.

Aaron_Paul

@Aaron_Paul

Thanks for all your warm welcomes! @itsmewithms I've been watching all his videos he seems an absolute MS wizard. Will continue to watch them. It is really hard to get answers as it affects everyone so differently but it's frustrating which I'm sure you have all had to deal with the limbo land situation. I speak to some people that were diagnosed in a month. @vixen I got the results for my spine today which just showed some slightly bulging discs etc but nothing else of concern with normal spinal cord signal. Yet to speak to the neurologist. But seems to be ok, so back to square one. @rel12 amazing that you're doing well, it does just show how each person is affected differently and do what extent. It's all about mind over matter (which is why I'm waiting for CBT) to process things in life in general lot better. (Suffered health anxiety my whole life) @chezy17 it is crazy how this site has differed from others in the positive friendly way. People are angry and understandably no one really pencils in expected hurdles in life and to be honest not a lot is known about MS, just a stigma. I've read and read and read so im well informed and those videos from Dr Boster, so educational. Just getting the word out there about this condition and finding new treatments is everything. So regardless if I have it or not it will be educating everyone I know. This current situation doesn't help much putting fear into everyone. @accsesscrimea MS is typically worse in men due to the testosterone levels and figured as I have a clear brain scan then lesions may be on my spine which is more evident in ppms (no expert) @beky I've had a clear ct and then paid private for MRI's after doctor has been telling me its stress and anxiety for the last 5+ years. It may well be. I now have to wait for the neurologist on the nhs which at this rate will be in 2025 (eye roll) well everything seems ok after mri. So back to the drawing board! Anyways I've made a positive change as I've completed a 5 day fasting mimicking diet to reboot my system and now on a plant based diet going forward with fish. I already take supplements etc. ? My diet has always been good How much vitamin D do you take? What other natural supplements do you take? Anything for mood? (Need a truck load of that) My mood is everywhere at the moment, good days, bad days, overthinking days 99% of the time. Thanks for all your kind reassuring words. If anyone wants to chat I'm here ! And if anyone has any effective mind over matter techniques throw them my way!!! A