Last reply 4 months ago
Not yet diagnosed

Good evening my name is Bobby and three weeks ago I developed a dropfoot on my left side two days after I started to get pins and needle is in my left leg and left arm I have private insurance so my GP sent a request and I was seen by a neurologist probably about two days later my neurologist sent me for a nerve conduction test which I will get the results tomorrow evening I’ve also had to MRI scans one on my head and one on my lower back both came back clear since then I’ve been developing new symptoms my question would be what would I go and speak to my neurologist about tomorrow because I’m almost convinced it’s MS I also have the other symptoms which is memory loss headaches nausea loss of balance and so forth
any advice would be appreciated
Bobby

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vixen
5 months ago

Hi @bobby79. Indeed, some of your symptoms could be indicative of MS but could also indicate lota of other things too. By a clear MRI do you mean no lesions? Most people with MS would have lesuons. Luckily for you, you are being fast tracked through private healthcare. Most of us have had diagnosis verified by a lumbar puncture. Good luck with the tests, let us know how you go!


owen_pickering
5 months ago

Hi! Yeah reading what you’ve put, your symptoms definitely sound like MS symptoms. That’s said, I agree with what vixen said you’d have lesions in your brain/spinal cord which should appear on the mri scan. Did they use a contrast die for your MRI? Of course I’m not a doctor and there’s tons of other conditions out there apart from MS. Good luck with it, and let us know how it goes tomorrow.


bobby79
5 months ago

@vixen thank you for your message
No I don’t think I have any lesions


itsmewithms
5 months ago

Dr Boster is one of my favorite Neuros with a You Tube channel on educating patients (and the world) about MS. this is his video on diagnosis…MRI is the typical method these days but not his only test and there are some reasons still do Lumbar Puncture in some cases. May be a helpful one for you https://www.youtube.com/watch?v=0csvVXatlFo&t=63s

If you search Diagnosis in the magnifying glass or using the tags after your post you will see more discussion as well. MS can be tricky to diagnose…hopefully you get it figured out soon 😉 good luck


stumbler
5 months ago

@bobby79 , list out all those unexplained symptoms, so that you can present them to your Neuro and see if he can explain the reason or the investigations he plans to follow.

MRI scans aren’t infallible. There are different grades of scanners, so some scans can show more than others. Also, not all MS activity is visible using the scanners.

It all just goes to show how complicated our bodies are, specifically the brain. And, this is why neurological conditions are so hard to diagnose.

This isn’t that helpful, I know. All we can do is provide our Neuros with as much information as we can, like any events/circumstances which may have preceded this episode.


itsmewithms
5 months ago

@bobby79 As @stumbler notes it is very helpful to bring your “MS Diary” in with you to appointments. Keeping track of the onset (or relapse) of symptoms and their severity is very helpful. Drop foot is a common MS symptom but can also stem from other causes. It sounds like your symptoms are pretty classic but it is prudent to rule out everything else in a DX if the MRIs aren’t conclusive-

Hopefully you get some answers today now that the world should be back to work 😉 MS doesn’t take a weekend break-


bobby79
5 months ago

@stumbler
@itsmewithms
Thank you so much for your information and support I’ll let you guys know how my appointment went when I get back wish me luck


itsmewithms
5 months ago

Indeed! and make sure you bring a notepad with you to take notes during your appt if you don’t have another person with you to do that. Now that I use my “smart” phone more I am tempted to just record our conversation to listen and take notes from afterwards. As you have found out getting and seeing a good Neurologist is something to take full advantage of-

Good luck!


rel12
5 months ago

Hi @bobby79 !

It all sounds like MS but your MRIs are showing no lesions which is good. I know this was asked but were they done with contrast or without?

I would definitely ask your doctor to explain the results and mention your symptoms. Maybe they can recommend someone else that you can speak with if it’s something else. Good luck!


wobblygirl04
5 months ago

Sounds pretty much like MS but it’s a slippery disease to diagnose. Sometimes it only shows on a lumbar puncture but it could be something else. Your neuro sounds on the ball and the faster the process, the quicker the dx. When I look back, I had symptoms for many years which came and went – maybe one episode a year and I couldn’t run properly since about 2005! but I just threw it in the fuckit bucket and carried on. Then, one day when I was driving, my foot dropped on the accelerator and I couldn’t get it off! I shot over an intersection without hitting anything and came to a stop knowing I’d have to do something. Did a bit of research and all signs pointed to MS. I was quickly diagnosed in July 2016, got approved for Disability in September and had an automatic Motability car (I’m in the UK) by October. Bit of a whirlwind. Am now walking with a cane and my life is utterly changed. I can’t work but I can volunteer. Since my dx, I have travelled solo to France, Croatia, Italy, Malta, Spain (many times) and Tenerife. Was afraid there would come a day when I couldn’t, so I did! That’s my only advice to MS’Rs – do what you can when you can! Regret is harder to live with than the disease itself. Good luck and keep us posted!


itsmewithms
5 months ago

@owen_pickering and @rel12 point ask if your MRI scans were done with and without contrast. This has been done to help with MS diagnosis the entire time I have had MS and is kind of the standard. Some people have complained on this forum about issues they have had that may relate to the dye and then I read this article that said based on the type of MRI machine the dye may no longer be needed.

So now it is important to know what technology they have in the MRI machine itself. If it is a “3T” MRI the second set of MRIs with the dye is not needed. See this article – this was new to me! “…scans that employ a 3T MRI* (a higher powered scanner used in research), when used in combination with new artificial intelligence techniques, are “ready to supersede routine use of contrast material in most instances of follow-up investigations of patients with MS, reducing both imaging time and cost without missing new or enlarged lesions” They come up with new stufr every day…this article was from this spring and I don’t know how many imaging sites have these 3T scanners-

https://multiplesclerosisnewstoday.com/2019/03/12/need-to-know-do-i-need-contrast-dye-gadolinium-mri/


kimiblanc
5 months ago

hey! I would say if you are in private healthcare take advantage of tests as if you get diagnosed they then stop covering you which I am sure you will know. Make sure you get an MRI of brain and spine, if you haven’t got the spine yet, and I would go for a lumbar puncture too. I got diagnosed privately too, it is really helpful as mean you can get the tests and results SO much faster.

The lumbar puncture is what all confirmed it for me…

Good luck,
K


bobby79
5 months ago

@vicson,@owen_pickering,@itsmewithms
@rel12,@wobblygirl,@kimiblanc
Good evening guys
Really sorry I haven’t replied to any of your messages I was really waiting for this appointment
Don’t know where to start really
So I went to see my neurologist Today
Gave him a list of my symptoms like you guys recommended unfortunately he didn’t even bat an eyelid so he basically said the only problem is the foot drop and that’s because of the nerve that’s been pinched in my knee I did say to him what about my left arm but has pins and needles I also said about the fatigue And the other symptoms and he said it’s nothing to do with MS I asked if I needed an MRI scan with contrast as my previous MRIs well without he said there’s no need as you guys know I have a private GP and she is absolutely lovely coming out of my appointment I called my GP and told her and she just as surprise as me say so I’ve asked her to speak to one of her colleagues who is the neurologist and arrange for me to see them and wait to see what the outcome is then I’ve had bloods done today by my GP
I should get the results for them tomorrow with Christmas and New Year coming it just delays everything with all the bank holidays
Please let me know your thoughts on this
Kindest regards
Bobby


itsmewithms
5 months ago

Ughhh…yes, that is the way diagnosis is sometimes. I realize after reading posts here (and other places) that it is a true battle for others! I had posted the Dr Boster YouTube diagnosis video that describes what he feels is necessary to diagnosis MS and if they haven’t explained all of your symptoms it sounds like they aren’t quite there yet and you are letting them know that.

Hopefully you can convince them to do a thorough exam including an MRI. If it is the newer more modern one (3T I think it is- referenced in the video I had linked) and they know how to read that it sounds like the dye may not be needed. So see what they have and ask the questions. In this area Knowledge is Power 😉

Hard to press through the holidays but do your best – hope you get some answers soon!


bobby79
5 months ago

@itsmewithm
Thank you for your message so I had my bloods done which came back with everything okay except vitamin D deficiency
Which I’ve been put on some medication for fultium-D 20000ui
So I’ve been prescribed these vitamins I was told to take to every Monday for seven weeks so does that mean I have to just wait around for seven weeks?

New symptoms last night I was walking in the house and all of a sudden I’ve got a really bad pain in my left knee it was so painful that I actually dropped the floor and I was absolutely shivering


itsmewithms
5 months ago

Strange, I’ve never had that but considering how many nerves we have and could be individually impacted for different people it could happen and in this forum it probably has for someone else.

When I was working with Bioness for the L300 Go system for foot drop they asked me if my knee(s) would ever buckle backwards, kind of collapse, and I said that happened occasionally when I walked and hadn’t associated it with MS. They said that can also be an MS symptom. I thought I was just battling foot drop but it seems that the knee kind of snapping backwards causing me to stumble can also be an MS issue…I’ve never had pain with it though.


kimiblanc
4 months ago

Hi Bobby,

Just re reading through your messages. Hope you were still able to enjoy Xmas and new years!

Have you got private healthcare? If so, I would see a different neuro and ask for an MRI scan and lumbar puncture. I guess this is me just re encouraging you to ask for it again – if not possible with your current neuro or your private GP cannot get it, then I would encourage you to just ring a different hospital and get seen there instead. I remember waiting in eye hospital A and E for ages and the best advice I was ever given is to not leave without an MRI scan referral.

Sounds like your GP is great though so hopefully you won’t have to go to those lengths.

Take care
Kim


shtanto
4 months ago

The most immediate thing you can do for yourself is to begin the vitamin D3 protocol aka the Coimbra protocol. Beyond that, learn everything you can about low dose naltrexone. You’re probably going to need it. Dickson’s chemists in Glasgow can hook you up. For the drop foot, see Amatsu. I can help you with that. Acupuncture will also work

Avoid stress as much as possible. We know about you now. You’ll be alright 🙂


anonymous
4 months ago

@shtanto Those can potentially be harmful words of wisdom considering Health Canada has only approved 4000IU daily.


shtanto
4 months ago

I take 5000IU daily, well over 5 years now. Many studies used much higher doses: https://www.mstrust.org.uk/life-ms/diet/vitamin-d

We know it works. Of course, different people will tell you different things. You’ll know you’re topping out when you start to feel thirsty all the time.


anonymous
4 months ago

@shtanto this information can be misleading and potentially dangerous; since Health Canada has only approved 4000IU a day. I hope your consuming a lot of water to advising kidney stones.


anonymous
4 months ago

avoid *


shtanto
4 months ago

Comes back to who you trust online, as usual. I’ve never known an internet forum to change anyone’s mind about anything. Mind you, in 10 years of advocacy work I’ve yet to hear of anyone severely overdosing on D3. Dr. Quinn always said 10,000IU was as much as he’d ever take. Best source is sunlight of course.

It’s never really worth the row.

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