In early August , I had sudden symptoms that were thought to be a mini-stroke, primarily sudden left-side numbness and tingling. (I went to the ER, had MRI, CT scans) This resolved in about 24 hours. I then had 5+ “episodes” of this which progressively were worse and longer duration. Now I have numbness and tingly that never really goes away.
When I saw a neurologist a couple weeks ago, she went through all the evidence of why my issues were not at all vascular; it appears I have amazing veins/vessels for my age(48F). Her tentative diagnosis is MS based on about 10 lesions in my brain and my symptoms. The tingling and numbness in my leg, especially around my knee, give me no confidence when walking. My left arm is not painful but I can’t get it comfortable. I’m so tired. I slept 12 hours, then took a nap after being awake for 2 hours. I feel like I’m not doing my job very well, forgetting things and feeling like my brain is slow.
In thinking back and talking with my partner, I’ve realized I have had symptoms that could have been early warning signs. Over the past few years I’ve experienced tingling in my hand, inability to cope with high heat, random bouts of terrible itching on both calves and upper arms, and in the past year tripping over words with difficulty pronouncing. This last one is terrible as I teach a foreign language.
I cannot see another neurologist until February. I don’t know what to do while I’m in diagnosis limbo. The 1st neurologist was very detailed about why she thinks it’s MS but I still have months to wait to find out more. Right now I’m feeling lost and could use advice from this group. I’ve read a lot of your posts and I’m impressed with how much you all know. Thanks and sorry this is so long!
Sorry to hear about your health concerns. Problem is, they can’t just diagnose MS on the spot so easily. They need evidence in space and time. It took 2.5 years in limboland for me. Looking back, I should have gone private. Please put pressure on your doctors. I chase all the time, otherwise hardly anything is done.
Just wondering why you can’t see another neurologist until Feb? Seems a long time ?
2.5 years is so long! 4 months doesn’t seem nearly as terrible in comparison. I simply hate waiting and not knowing, losing potential treatment time.
I’m in the United States, so medical care works a little differently and is so incredibly expensive. One MRI is about $6000 if you do not have insurance. The wait times to see specialists are also long in my area. I am on a cancellation list should an earlier appointment become available. Thankfully I have a wonderful primary care doctor (GP) who is working to find something sooner.
Thank you for your reply!
It is indeed a long time! Unfortunately the wait for many specialists in my area (of the USA) is long. I only had the appointment a couple weeks ago because there was a cancellation. My original appointment was scheduled for June! My doctor contacted offices in the area and the wait times are similar. I can only hope there is another cancellation.
Hi Ruthie. My sympathies to you. In addition to Avonex ( my DMT) I follow the suggestions set out in ‘Overcoming MS’ - a website and book(s) from an Australian Professor of Medicine- basically a set of recommendations on diet, exercise, vitamin D ( sunbathing or, especially for those like myself who live on the cloudy west coast of Scotland , tablets) and meditation/ mindfulness. Things to do in addition to the DMT
Don’t be sorry your worried an that’s natural when you don’t full know what’s goin on I’ve been diagnosed a month an was one of the lucky ones that didn’t have to wait long for test and results so in space of say six month I’m at a diagnosis I thought I had a traped nerve an ended up with a prolapsed disc that with further tests turned into ms I had my first appointment with my ms nurse the 9th Oct I was in denial thinking they’d got it wrong well hoping really they explained it to me in more detail what it is how it effects you I’m scared more now than I was it’s hard to process I thought I’d be able for first line treatment turns out I’m to far gone I’ve two options an if they don’t work that’s it but theyl continue to support me I’m yet to go on to DMT’s I’ve opted for the intravenous one every six month so just a waitin game now I hope I don’t have a relapse while waiting my baseline at the moment is balance,walking,thinking,speaking,numbness, tingling,mood among others I’m told that’s the new me I have to live with no two people are the same what I’ll say is keep pushing them don’t take no for an answer it’s hard to confirm ms as alot of other symptoms mimic ms the main test is a lumber puncture but that’s not 100 percent it only shows a certain protein but with that the lesions and your symptoms they can determine ms but Ur always entitled to a second opinion but they have a team of specialists that all get together to make an informed decision it’s hard but stay strong and talk it really helps hope you get sorted soon
I’m sorry you’ve been diagnosed, and happy you’re on the path for treatment. My best wishes to you. Thank you for the encouragement.
@Hank_Dogs thanks so much for the recommendation. I will definitely seek out his website.
I also live in the northern climate of New England where we spent many months of winter inside and/or bundled from head to toe. Getting enough vitamin D from October-April can be very difficult!
I tend to think that there is a lot to be said for the OMS suggestions. Overall they come down to keeping fit, healthy and eating ‘food for the brain’ plus reducing stress through mindfulness/ meditation ( stress being bad for MS).
( the OMS suggestions include sunbathing or swimming in the sun! Ok if you live in Australia but over here we are entering the wet grey winter months when you sometimes don’t see the sun for days and days. I see however, that the next few days will bring some sun - which will be very welcome 
)
I asked my ms nurse the link between vitamin d and also diet and while she said there’s not enough evidence to suggest there contributing factors it wouldn’t hurt to try them certain foods cause inflammation in the body that doesn’t help mainly heavy processed foods so having a healthy balance can’t hurt but in the world we live in not everyone can live healthy due to cost was what I was told vitamin d is what we lack due to being so far away from the equator I live in Northern Ireland but I’m originally from the north of England an back in 2021 I was really low in vit d an was giving tablets there working overtime to find triggers and beter treatments and a cure the sooner your diagnosed you can start a treatment an get back some normality I take each day at a time an I’m thankful for what I have and learn to live with what I’ve lost there’s always someone worse of than me and I take inspiration from them