Your diagnosis, can you relate and questions I should ask

Hello! I started with chronic fatigue back in June, no other symptoms other than headaches, pain behind my eye and blurred vision in one eye. flare ups kept happening and made me feel so bad I went to a&e but they couldn’t find anything wrong. By July I had an ‘attack where I had strange sensations in the back of my head, pins and needles in my fingers my wrist was in a bandage because it started hurting. Then 2 days later it went away and the cycle began again.

I mainly get the pain on the right side of my body in my arm, wrist, hand (sometimes feels numb) my knuckles (feel swollen but not), my hips (they feel achy) and my right calf goes very tight. but I wouldn’t say is constant pain, it’s like episodes of up to an hour then stops. A lot of the time it feels like nerve pain. Then the next episode will hurt somewhere else.

My hands have started randomly feeling like they’re burning but they’re not hot to the touch. My feet feel like they’re in ice buckets.

My last bad flare up I had chronic fatigue and I got pins and needles down one side of my body and in my head and down my face, right arm and right leg. I felt so poorly for 5 days then it started easing off.

There are some weeks (like at the moment) I have no symptoms and my energy levels are not like they ‘used to be’ but I’m able to do everyday tasks. Some days I can’t move off the sofa.

I had my head and spine mri scan last week and the neurologist called me a few days later to make an appointment next week. So now I’m anxious something has shown up?

It definitely flares up when I’m anxious or if I feel depressed. Can anybody relate? If it is MS is there any questions I should be asking at my appointment?

Thank you x

[RoyceNewton]

Yes, ask for a brain mri to confirm and take valium to go into the tube, and maybe a second opinion. I hope you are NOT using dr google exclusively, that is bad

[Hidden in reply to RoyceNewton]

Mri already done - not pleasant is it haha. I suspect I’m getting the results on Tuesday as they’ve asked me to come into the hospital. Trying to avoid dr goggle or jumping to conclusions, but it is v hard when you’re in limbo...

[Frances_B in reply to RoyceNewton]

Royce - do you keep your brain in a different place to where everyone else keeps theirs in their heads? Clauds90 had already written that they'd had a head and spine MRI a week ago which is what prompted the neuro to phone and book another appointment...

Clauds90 - what will be will be and if it is MS and they tell you next week then it's not the best news someone can get but it's also not the worst news either as at least you are living in a time when there are effective medications available. If they do tell you next week that it is MS then you won't have had to go through what, for some people, can be months and years of uncertainties while the Drs make up their minds. And some of us get a scan done and then wait months for a follow-up appointment to tell us the results of a scan, and it's still the news that we've got MS. So, give Dr Google a miss for just a few more days (if you can) and see what transpires next week.

[Hidden in reply to Frances_B]

Thank you so much! I really needed to hear that - very true ❤️

[Kenu]

Welcome to our crazy 😜 group of ms’ers where no questions are stupid and you can find out information from individuals living with ms. My first symptom was lose of vision in my right eye 👁. As it turned out I had ms lesions behind my eye. I had the same things you describe about pain, numbness, headache, and tingling in legs and arms that had come and gone in short periods. Although they could see signs of lesions behind my I, the first thing they did was a lumbar puncture to confirm diagnosis. Later on I had mri’s of brain 🧠, back and cervical findings signs of ms in all three. I started immediately on Copaxone for twelve years. After starting treatment some of the pain and numbness continue but also improved greatly. My vision returned after 5 days of steroids gradually over 6 months. After about 12 years Copaxone quit working and I moved on to the next DMT. I have been on seven different DMT’s over 26 years. As one quit working I moved onto the next. Was able to continue to work for 21 years then cancer ♋️ struck causing my retirement (SSDI) at 60 years old. The best DMT for me was Tysabri, kept me upright and working till ♋️. Most current has been Aubiago which has worked really well (oral) once a day. We are like snowflakes ❄️ with ms, everyone is different with all kinds of side effects. That’s why different DMT’s work differently for everyone. This is a great place to find out true side effects of each DMT from people who care and understand what’s going on. Good Luck and welcome to our forum. 👍🙏😉🤗 Ken 🐾🐾🐾🐾

[greaterexp]

I hope you do not have MS, but if that turns out to be your diagnosis, this group is amazing and will be very supportive and helpful.

I think it would be helpful to ask questions related specifically to the findings and if a clear diagnosis has been made. That will probably determine your next questions, but you may want to ask, if you get a diagnosis, about what treatments are available, what does that neurologist recommend for you, what can be done about your symptoms, and what supportive services are available for you in your area? Would PT be helpful? Do you need a referral to a specialist who understands that diagnosis.

Please let us know what you find out. We're here for you, whether or not it's MS. We understand the stress involved in awaiting a diagnosis and then wading through information. Yes, stress can certainly impact MS, as well as many other diseases/conditions.

Look at what MyMSAA.org has to offer you, too:

mymsaa.org/

We wish you the best.

[Hidden in reply to greaterexp]

This is beautiful. Thank you so much xx

[kwhompus]

I noticed you mentioned the month of June as when your problems started. Many people with ms suffer from heat intolerance . When the summer weather starts to ramp up my fatigue becomes worse. When you go to see the doc next week maybe you can ask him about this. there are a few ways to combat the heat that help. I have found a few web sights that help too.

[mrsmike9]

If you have to have a lumbar puncture don't get worried. For me the thought of it was worse than the actual event.Write down all your questions before you go! For me there is nothing more frustrating than to be leaving and remember something I forgot to ask. When you get back to your car jot down what you were told. You will forget!

Let us know how things go. This is something that can be managed if it is what you have.