Last reply 8 months ago
Not diagnosed

Hi all. I’ve had numbness/tingling in my hands and feet. As well as severe burning sensation in one thigh. Pain in both feet equally and now a heaviness in my legs/thighs. I have headaches and brain fog. And overall things are just harder and take more effort. I do notice muscle twitches periodically in both upper and lower extremities. I do dumb things like hit my head when doing things, I’m not typically a clumsy person. The other day going downstairs my knee buckled but who knows? Could be a fluke. I had nerve conduction studies, that were normal (lower extremities). I’ve seen a podiatrist in the past and ruled out plantar fasciitis (for a few years I’ve had pain in my feet, growing worse, now it’s in my legs too.). Had a brain MRI, normal. My arms feel
Weak and heavy as well. I saw a neurologist a month ago, he said “oh I think you have a coupe of things going on? Plantar fasciitis and pinched nerves. Put podiatrist said it wasn’t plantar fasciitis, even injected my feet to try to rule it out. Then the pinched nerve? I’d just had normal nerve conduction studies? My symptoms did seem to fade some. It not all the way but maybe only 30 days before getting worse again, I’m frustrated, annoyed and don’t know where to turn. I feel
Like they all think I’m
Making it up and nothing is wrong. Also feel
Myself like I sound like I WANT something to
Ne wrong. I really don’t, I want to feel well! I fear more that it could be ALS or something with a quicker death sentence, I do have a 16 yr old daughter and an ex husband 2 hrs away. I panic a bit, she needs me a couple more years at least! Ok enough.. how did you all persist and where do you turn when you feel
No one is listening (doctors?).

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zoeb
8 months ago

Hi there,
I understand your frustration – many of us have been on long journeys with our diagnosis (including myself) and have been passed to various parts of the hospital before we were diagnosed with MS.

However, I am sure I speak for the majority of us when I say that we were diagnosed based on our MRI scans, conductivity tests and lumbar punctures. These are the standard tests for MS. I myself showed abnormal in all of these markers. Despite having spent years being passed around different departments of the hospital and not having conclusive diagnosis for my symptoms, as soon as they looked in the tight place with the right tests, the MS was a definite.

There are many other illnesses that may cause some of the symptoms that you describe. I wish you the best of luck in finding what is causing your symptoms – whether it is MS or not.

Best
Zoe


concerned
8 months ago

Thank you for your response. I do
Understand the MRI is very significant. I was less certain about the nerve conduction studies, they just did my legs but my symptoms are worse and began in my legs/feet so that made sense. I wish you and everyone else dealing with MS the very best in your journey. Obviously I don’t “hope” for MS diagnoses but I do feel tossed aside and like they disregard me, there’s no follow through. It’s like “well that test was normal, so go home, we are done”. And here I sit, getting worse with the numbness and pain. I need to go back, just not sure where to go back to or which dr to see.

Thanks again and many best wishes. One more question, since I know the MRI is fairly important. Is it possible to have a normal brain scan, and abnormal
Spine MRI? Or is it the brain scan that is necessary?


zoeb
8 months ago

Well in answer to the brain scan and spine scan question – in some respects yes. I have most of my lesions in my spine and very few in my brain. Although I do have both, so I guess it would be possible to have none in your brain. The doctors would be able to do a lumbar puncture and be able to look for particular markers that indicate ms, but they usually only do this is they are fairly certain there is a chance of ms.

So you have a little perspective, I was 16 years old (or maybe younger) when I probably noticed my symptoms, but I was 26 years old when I was officially diagnosed. The journey to an answer can be long in some cases, and sometimes you do not get the answer you expect. It may or may not be ms.

My one piece of advice though is do not stop living your life because of this. And don’t let this consume you. Carry on as best as you can, and the diagnosis will come.

Zoë


stumbler
8 months ago

@concerned , you need a Neurologist who can investigate the cause of this set of symptoms.

Write all the symptoms down in a short concise list, with a timescale. Also list all of the investigative procedures you’ve had. This can be passed to a Neuro, to help set the scene.

You need answers which explain the symptoms that you are presenting. So, don’t allow yourself to be fobbed off.


concerned
8 months ago

Zoeb,

Thank you for your response. I can understand having symptoms so long ago, it’s been years since my feet started hurting to a degree that affected my life, but I tried to ignore it and pass it off as normal
Life. After all we all have aches and pains, right? Not one to complain. Not usually. But the Increase in symptoms is scary. I keep telling myself just that, “who cares if you have a diagnosis? Just have the best “today” you can have and live life to the fullest”. The rest of that thought is “you better do what you want to do and not put it off, you never really know what could happen”. The one thought is, why not get it diagnosed for whatever it is? There surely could be a treatment to slow the symptoms! I’m a registered nurse, but neuro is not my specialty. I worked hospice for many years, prior to my current desk job.

Stumbler- I know you’re right, I need to go back. But I did see a neurologist and he dismissed me, or so it seemed. With no follow up needed? I guess I need to go back and complain louder, that’s so unnatural. But I do appreciate being able to pour it all
Out here and get your responses. Thank you!

Best wishes!


kelly83
8 months ago

I’m sorry you have unanswered questions. I’m in the same boat. Similar symptoms as well. I find the symptoms I have increase in intensity when my body is battling something like a cold or my menstrual cycle. Over a year ago I had an attack (was disoriented and falling to my right side with a sharp pain running along the front side of my head. Lasted a couple hours then thats when the numbing in my face started) and the emerg rules out stroke and bells palsy (face was numbing). He immediately contacted a neurologist (MS specialist) and he agreed I had all the right symptoms and would see me. A day after my emerg visit my left leg started to tingle hot and cold and well as have a numbing feeling (like when your mouth starts to come back after a freezing). Next day it spread to my other leg for a few days before tapering off. I had a mri on both my brain and spine as well as blood work and everything came back just fine. The neurologist mentioned something about CIS and also made it my choice to come back in a year for a follow up. I feel like I’m wasting everyones time but I’m still living with my issues as well as new ones. My left leg even on my best days has had a numbing sensation and tires quicker and that hasn’t changed since my first episode.
I’m not looking to be diagnosed with MS but it sure would be nice to know what the cause is. I guess im also hoping to hear from ppl with similar experience and hear if they ever got answers themselves.
I hope you find yours and get the help you need 🙂


concerned
8 months ago

Hi Kelly, Thank you for replying and sharing your story. I’m sorry too, that you are not feeling well and not getting answers. My symptoms are all
Symmetrical except my left leg is about half numb? Kind of like it’s coming out of anesthesia or a nerve block. (I know this from an ACL
Repair on my OTHER leg 3 yrs ago.). The tingling is in my hands/arms and face as well
As my feet. Like pins and needles. My left leg feels like it’s on fire at night. But this may ease of for a few weeks at a time, then return with a vengeance.
I think we both need to go back to
Our neurologist or primary DR and be persistent. I’m considering an internist because my experience working in those clinics is that they follow through and manage the overall patient. Not just one piece? And as we speak my right side of my face has that cold/hot feeling. Like by my mouth and right side of chin. I think I block these things out as much as possible to
Live life and not let worry ruin my day. So when asked to describe my symptoms I fail.

Most importantly we need to advocate for ourselves, but I admit some frustration with the co pay and expense of repeatedly going to the dr and getting nowhere.

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