Worried to death I have MS

New diagnosis and before diagnosis
1

Hi y’all… I’ve been reading this forum for months now and I’ve decided to share my story to get insight from people who aren’t in my life and try to dismiss my worries as I’ve been very upset and anxious about them.
To start, I’m 27 F. Back in February of this year I had an MRI on my brain for headaches, the MRI came back clear.
In April, I had a very small procedure done to remove a cyst in an….uncomfortable area. This procedure required me to be bedridden for about a week. I mention this completely unrelated procedure because this is when my symptoms started.
At first it was just a heavy, burning/freezing sensation in my legs (worse in my left leg) - the pain was like a gnawing uncomfortable Charlie horse type of pain. I’ve experienced pins and needles briefly for a night or so in the last couple months and the burning sensation would sometimes travel up my legs into my pelvis and bum. I had blood work done as my doctor thought it might be a nutritional deficiency (B12) but when that came back normal (on the lower side of the spectrum but not enough to be deficient) I started to get very worried. Due to the MRI I had in February, my doctor said it’s unlikely to be MS. She did note that my iron levels are very low which could explain the freezing and burning and recommended I take iron supplements before bed for 4 months which I started a couple nights ago. I have blood work to check my electrolytes next week. Yesterday, the pain turned into pins and needles all over my body, including my face. I noticed a pain in the middle of my back and the pins and needles affect me when I’m laying down or sitting. I find relief when I’m outside in the sun so it really sucks that fall is here and I won’t be able to get that relief.
When I get up and stretch out, the tingling simmers down. Along with the pins and needles I’m feeling itchiness and a bubbling sensation running up and down my left leg and arm. My left hand feels tight like it wants to stay curled up but I can still use it. I don’t have issues with balance, speech or vision but I also know MS shows different symptoms in everyone. I’ve thought maybe it’s a pinched nerve but I don’t believe a pinched nerve could affect my whole body like this? Im going to make another appointment with my doctor tomorrow about these last few days but I’m absolutely petrified. I feel anxious and I know that’ll only make it worse but I can’t help it. I’m seeking insight from anyone who’s had a similar experience but it turned out to be something else or any knowledge anyone has that could put me at ease. I feel that my quality of life has changed since April because I get so scared when these symptoms start again and all I want to do is lie down and cry.

Thank you so much in advance.

2

Hello

I think you’ve answered the question yourself. ‘MS shows different symptoms in everyone’.

However, as you’ve had a clear brain MRI its less likely that MS is the cause. Also, your symptoms seem to come and go quite rapidly. That’s less common for people with MS, mostly an MS relapse would give you constant symptoms for a period of weeks or months before remitting either fully of partially.

This doesn’t mean that it can’t possibly be MS, sometimes people have MS type lesions in the spine only, so a brain scan would appear normal. And occasionally people with MS do have rapidly cycling symptoms. Certainly pins and needles, weird sensory symptoms, tight feelings, including a ‘clawing’ of hands are all symptoms that may be seen in MS.

So far, so useless I’m afraid.

What you really need is a referral to a neurologist. You could then have a complete neurological examination and the neuro could then refer you for further tests, including a spinal MRI.

Essentially you need answers to take the fear and worry away. Sometimes it’s a relief to be given a diagnosis, even of something you fear, such as MS. When you know what’s wrong with you, you can get treatments and therapies to help. Diagnosis, of anything is often better than living in what has come to be called ‘Limboland’.

Best of luck

Sue

3

Hi Sue,

Thank you so much for your response.
I’m feeling a bit better tonight but had trouble sleeping so I’m feeling tired from that. I’m not sure what these symptoms could be from but im quite frustrated with the countless doctors chalking it up to anxiety. I’ve had anxiety for nearly 10 years but it’s always been as a result of something. Sure I’m experiencing anxiety now but it’s because these symptoms are worrying.
Due to covid, doctors appointments are so far apart so its frustrating to be left in the dark for weeks - hoping its one thing but having tests show up negative is worrying. I really hope I can find out what it is soon - and i hope it’s treatable and temporary.

Thanks again!