Thank you for your reply
I was biding my time so as to observe myself, without further medical intervention.
Your words are comforting.
From Vermont, USA
dianemortier
I suspect I have MS, one because I have a family member who has it and two because of the description of pain felt in my arms and back. It is almost too much to bear.
I’ve been diagnosed with chronic migraines, dysphasia and have had this kind of pain before. I’ve never thought to look into it until it started getting so bad that I can’t go to work.
Hi
I’m sorry to hear that you’re going through a difficult time and experiencing symptoms that have led you to suspect multiple sclerosis. It can be a confusing and scary time when you’re dealing with health issues, but it’s great that you’ve taken the step to seek information and support.
If you have been diagnosed with MS, it can be helpful to reflect on what you now believe were your first symptoms. For some people, it can be difficult to identify the earliest signs of the disease, as they can often be vague or mistaken for something else. Common early symptoms of MS include fatigue, numbness or tingling in limbs, vision problems, and difficulty with coordination and balance.
If you haven’t yet been diagnosed, it’s important to keep an open mind and not jump to conclusions. However, it’s understandable that you might be feeling concerned, especially if you have been put on a “watch and wait” list by your neurologist. Some other conditions can cause similar symptoms to MS, so it’s important to have a thorough evaluation to determine the cause of your symptoms.
In the meantime, it’s important to focus on taking care of yourself. This can include things like eating a healthy diet, getting plenty of rest, and engaging in regular physical activity. It’s also a good idea to explore alternative pain relief options, such as the safe pain relief program offered by ITM Therapy (https://itmtherapy.com/step/safe-pain-relief-program/).
I hope this information is helpful, and I wish you the best in your journey towards getting a diagnosis and finding effective treatment for your symptoms.
Hi,
I am Kim, I live in Manchester im 35 this may i would never bet as being a patiently, i am to waiting for my current neurologist to bring my appointment to get my brain scans done to as no later than any date given in June but it they do do the scans it comes back i have it’ll be able to say to her i was right all along.
So after we gave scans whos the one giving you guidance & advice.
Haha going back 33 years or so…
Probably having to sit down to piddle in the boozer and nightclubs.
Annomous
Sorry you are feeling like that. What is the next step for you?
Dear ConfusedandFrustrated,
MS is a bit of a mimic as far as symptoms go (it can mimic most other ailments which is why it’s such a s*d to diagnose), and the lack of awareness of GPs of how to spot MS and other neurological conditions (that’s changing by the way as more focus is being put on spotting dementia, lucky us eh that we get picked up indirectly), combined with the high pressures on the medical front line, can lead us to feel somewhat uncared for, but here’s the good news, you can take solace in the fact that you’ve had scans and your brain lesions have been identified! That first step is often the biggest hurdle, just getting a scan and us realising why we’ve had the symptoms that we have, and you’ve managed to navigate that one. Well done!
You may feel like you are in a medical lull at this time where nothing appears to be happening, but in the background letters are being sent, records updated, departments informed. Cogs are moving, albeit slowly enough to compete with movement of the continents, but your scan information on your records will help get the ball rolling.
It’s a shame we are not told what’s going on behind the scenes so we don’t feel forgotten, but they don’t, and we do. Just be aware that you are surrounded here by people that know how you feel first-hand. You are most definitely NOT alone! It’s a very exclusive club full of wonderful people (grin).
A big virtual hug and welcome.
Dave
2 Likes
Hi gang, well it is really we are exclusive. I think I would say this to those anew to these symptoms/ waiting for results etc. You have good company here. Because we were are all in the same boat and know how tricky this makes adjusting to new conditions, but we all share helpful supportive information.
Wishing you all the support in the world
Jay
For me, personally it felt like I was/ died, because the grieve you feel is very overwhelming. It took me two years and my third relapse to occur before I, decided to take on my newly found working role on as a project. Find your strength from anywhere you can except drink and drugs. These are best saved for recreation use.
Don’t get angry with yourself for feeling the way you do and will. Cry if you need to scream if it helps!
But be grateful that you have more time on this planet earth to enjoy it’s bountiful blessings.
You will surprise yourself with how strong you are and accept the support off family and friends.
Keep in touch with everyone and anyone here. They will answer any questions or signpost you were to look for assistance.
All the best.
My MS doesn’t make me unable. It makes me more able to do my best.
Jay
1 Like
Hello,
I initially blamed a side effect of taking Roaccutane; that drug has a pretty bad rep.
But learning more, MS symptoms may have stemmed as far back as early childhood.
I remember having heavy nose bleeds as a tot.
In an MS seminar, I learned all about the blood-brain-barrier. Perhaps until they pinpoint the exact cause of MS, we’ll never know for sure.
Best,
JP
Hello everyone, I am new to this site. I feel stuck in limboland. I started to experience unusual symptoms probably around 4 years ago and have spent a lot of time frustrated and feeling like I am getting nowhere with a diagnosis or even a referral to get tests. In previous years, I have suffered with symptoms that seem very similar to SLE Lupus, dry eyes, dry mouth, hair loss, rashes, sun sensitivity, psoriasis.
I had autoantibody tests run in 2019, they came back negative. In 2021 had sexual health blood screen, which took weeks to return, I was never shown results on the screen but just told might not be Hiv, I might have “something else.” In 2022, had a good year felt generally quite well so did not return for any consultations.
This year have been experiencing a lot of symptoms. I requested that an autoimmune panel be taken again. Followed up twice with doctors only to be told they had not been returned. The secretary told me it wasn’t the connective tissue disease panel being quiered. Later after requesting information the doctors the doctors told me it’s all fine, again wasn’t shown results.
Some of my symptoms this year have a similarity to ms: tremors, episodes of consistent blinking, pins and needles, weak muscles which are worse getting up from sitting position, a zapping feeling internally roses from chest up throat through to ears, pressure feeling on spine and bladder & bowel urgency. These symptoms getting progressively worse quite rapidly.
I also have episodes of bloating and a pressure feeling on left rib. I don’t know what to do things don’t seem to be moving forward been offered physiotherapy but would like some kind of referral to know what’s going on. Can anyone make any suggestions about what I can do going forward?
I hope you get sorted soon I started with what I thought was a trapped nerve on in my back on my right side I was referred to physio after a few sessions I was sent for an urgent MRI that found a prolapsed disc and inflammation further up my spine so I had a further MRI that also found inflammation in the brain and swollen lymph nodes they came back fine so I was sent for a lumber puncture and had 15 tubes of blood taken and an ECG I was shown no results I had to ask if the ECG was ok they seemed more worried about something that showed up in the lumber puncture didn’t find out anything on the bloods everything moved quickly an now I’m in to see ms nurse for treatment I’ve been approved for injection or intravenous treatments but I’m very skeptical I was told that there’s long waiting lists for tests an diagnoses so why the rush what aren’t they saying I know something wrong coz of things that have been happening to me I’d say keep on at them always ask for second opinion if Ur not happy do Ur own research as wel
Hi,
Welcome to the community! I’m sorry to hear that you’re going through this uncertain time with your health. It’s great that you’re reaching out for support and information.
In my case, I was diagnosed with MS several years ago. Looking back, the initial symptoms that led to my diagnosis included unexplained fatigue, occasional numbness and tingling in my limbs, and difficulty with balance and coordination. These symptoms were intermittent at first, making it challenging to pinpoint the cause. It took some time and various medical tests to reach a diagnosis.
For those who are not yet diagnosed but suspecting MS, it’s essential to consult with a neurologist and undergo the necessary tests for a definitive diagnosis. MS symptoms can vary widely from person to person, so it’s crucial to rely on medical professionals for an accurate assessment.
Remember that you’re not alone, and there is a supportive community here to share experiences, advice, and comfort. Don’t hesitate to ask any more questions you may have or share your concerns. We’re here to help and listen.
Take care, and best wishes for your upcoming brain scan.
Hello, I have had strange symptoms for between. 6-12 months but just never understood what they were or why they were happening.
My strangest symptoms were not being able to coordinate walking correctly or stepping from one obstacle to another was impossible, even stepping up and down from a pavement became difficult.
My symptoms gets worse as the day goes on, however getting out of bed in the morning and getting dressed takes a lot of effort and thought.
I have had an MRI and the results were inflammation of the Nervous system. I am now waiting on a lumbar puncture procedure for the final confirmation I have MS.
I used to be such an active person but my energy level so low now and the weakness in my legs is is getting worse.
I have other symptoms but where do I stop?
james
I actually was recently diagnosed with ms. From everything I have been reading I was actually really lucky in some ways.
About a year ago I started having some leg numbness, but as I was also having gut issues that looked like crohn’s it was written off as the nortriptyline I was taking for abdominal pain.
About a month ago, I developed a bad case of double vision and bad vertigo. I ended up heading to the hospital since I thought I had a stroke. A CT scan didn’t turn anything up so they did an MRI that shown significant lesions all over my spine (in every area between c1-c7, and a few in the t1-t4 region) and brain abnormalities. They admitted me, did a spinal tap, and took about a pint of blood over the week mainly to rule out any other infections.
The wildest system I have had, which is rather common, is eye muscle issues including double vision, tracking issues, and both eyes will not turn out.
I start Keysimpta next week. My neuro doctor and I are hoping it will help.
Now to wait for the double vision to either go away or the brain to suppress the other image.
Hi there!
New poster here looking for some guidance or answers from others in a similar position.
So I’m 30F. History of endometriosis, lower back pain from 2x slipped discs, Rauynauds disease, depression and a gastric bypass 2 years ago.
For a while now I’ve suspected that I may have symptoms of MS.
For around 8 months I’ve had tingling and numbness in my toes and some of my fingers which is intermittent. I get purple patches on my toes too, non blanching that go numb.
I stumble over thin air constantly.
I’ve had migraines before but now I’ve started with headaches for the last month or more behind my ear only on my left side. It feels like cold sometimes? Like someone is pouring cold water only in that spot?
For the past 3 days My neck has been so stiff that side, my left eye is red and Bloodshot, my ear aches and the pain is just left sided in my head. I also have a small pea size painful lump on my scalp on that side which I’m unsure if it’s related as I noticed that well before Christmas and it’s painful to touch but not red.
Other symptoms include brain fog, increased depressive symptoms, anger.
I’m slowly putting all the symptoms together but I’m scared to approach my GP as I feel I’ll be dismissed.
I’ve been before about my numb toes and they started me on gabapentin that didn’t really work.
I went about my moods, they did a full hormonal panel and everything was fine just my ferritin and hb was low but this is longstanding (years).
I want to approach my gp but im scared of how to approach it.
Thanks
Rhiannon. X
Hello
I’m sorry to hear that you’re going through an anxious time.
I think what is really important here is that you speak to your GP about your concerns, as your symptoms could be many different things.
MS is not easy to diagnose, and often there are symptoms similar to MS, but not actually MS.
We’re not medical professionals on this forum, we just have experience of our own symptoms leading up to diagnosis. So I’d hate for anyone to say to you that your symptoms sound like MS, when they may be attributed to something else.
If you receive a diagnosis of MS further down the line, then we’re all here to answer questions and hopefully reassure you. But at the moment it’s vital that you seek advice from a medical professional and to discuss your concerns with them.
Wishing you all the very best x
Hi Rhiannon,
I agree with Madpants and that’s very sound advice.
I would add that, as you have some very distinctive visible manifestations, the bloodshot eye, localised headaches, the purple patches on your toes, and the tender spot on your scalp, many of which are not so typical of MS symptoms, that these will need to be investigated first, and treated, before any other diagnosis will be possible. You may find that treatment of these first things will also reduce the other concerns, such as the numb areas and tingling, as they can all be related.
We must remember that, even if MS is in the picture, it doesn’t mean other things can’t or won’t happen! Part of dealing with MS is going through the frustration of eliminating all of the usual causes for symptoms before saying, “Oh, it’s the MS again”. We have to know that nothing untoward is going on that needs to be dealt with in conventional ways, and that’s often a different on-going battle!
I would gently add, do your absolute best to avoid self-diagnosis. It can be worrying and unnecessarily distressing. Yes, it is the nature of the brain to try to make sense of what is going on, and we feel happier if we are able to have definitive answers to things, but do your best to live with, “I don’t know”. Investigating something is very different from forming a conclusion about it. Forming conclusions is how the brain stores vastly complex things into a summary of an idea or experience, but a conclusion also means we have stopped investigating, and if it is a conclusion that is also distressing… we end up fossilising and locking that distress into our thoughts and feelings too!
It can be helpful to the doctor if you work out which of the symptoms is causing you the most concern, and then focus on that one area. If they ask, “Is there anything else?”, tell them about your next most worrying concern, but avoid drawing conclusions for them. Always let them join the dots. They may join them in a very different way because of their experience, or perhaps a new discovery they’ve read about.
We also have to remember that doctors are very human. They can easily become overwhelmed if we present a complex set of symptoms to them that at first glance seem unrelated. If you can be clear about the things that concern you the most and deal with those first, that will really help both of you to feel less overwhelmed.
I hope that some of this is helpful and that you get some answers soon.
Dave
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Early twenties I started to have leg and hand spasms. I’ve always been a tired person but looking back I could sleep 24 hours and still be tired. Walking, travelling anything physical shatters me for days.
I was told I was dyspraxic, which now I think is possibly linked to MS. Anxiety, Brain Fog, low concentration, takes me forever to learn anything. Burning / pins and needles sensations randomly.
I think the Dr thought I was a bit of a serial complainer. Then I had Optic Neuritis, I still had to ask for an MRI. Anyway loads but hindsight is a wonderful thing.
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While I don’t have MS myself, my diagnosis with another chronic condition made me really aware of those early signs that can seem confusing at first. I can imagine it’s a similar experience for people suspecting or being diagnosed with MS—looking back and realizing that what seemed like random issues might have actually been early symptoms.