Clinical Isolated Syndrome

[suzie1]

Hello all i am new here, I am really needing some support and info if possible, after a few weeks of changed sensation in one side of my face and other bits and bobs going on i was given tests and an Mri revealed i have a patch of demyelination on my brain, my spine was not scanned at the time, i saw a neuro last week and have been diagnosed with CIS, i have been left feeling totally in limbo, by what i have read this is classed as an MS episode is that right ? he has sent my MRI on for further examination and has taken more bloods but at this point he did not say a lumbar puncture is necessary will it benefit me to have one do you think ? he has basically said to sit and wait for another episode before he can look at what to do next, i feel totally lost and don't know what to think i can't help thinking doom and gloom but at the same time want to grasp whatever positive i can get. Is anyone else in the same situation and if so and your further down the line than me how long before you could function without dwelling on it x

[Marco]

Hi Suzie,
Welcome to MSWorld. I'm sorry you are starting a journey that may end up with Multiple Sclerosis.

• All relapsing MS patients had a first episode known as clinically isolated syndrome or CIS. Not all CIS patients will have a second episode and develop clinically definite multiple sclerosis. Limbo is the exact term we use for people in the CIS, or pre-diagnosis, category.
• Some neurologists insist on a lumbar puncture, but others rarely order them. Lumbar punctures are a possible component of a MS diagnosis, but not a requirement.

It's completely normal to dwell on the news of possible MS. Many people start the grieving process, but that's difficult for people in limbo. People in this category are essentially waiting for the other shoe to drop to get a diagnosis that matches their symptoms. It's difficult, but still better than getting misdiagnosed in a hurry to diagnose patients.

Try not to overwhelm yourself with information. It's easy to read everything you can and overwhelm yourself. As you read you'll see plenty of broken stories where capabilities have been reduced my MS. The best lesson from these stories is that life is uncertain. With or without MS, do the things you enjoy, count your blessings and make the most of the life you have for today.

I'm glad you found MSWorld and hope you will continue to share your life with us, ask questions and find acceptance for your potential new life. You can live and live well with MS ... many people around here are wonderful examples of just that.

[suzie1]

Thank you Marco, i just don't know enough about the whole situation but also scared to delve to much that i get paranoid about every twitch and pain, what i have discovered is that i think my symptoms started about 4 years ago with what i thought was anxiety, i hope i am wrong and nothing else surfaces, this is a very harsh thing to face but i am sure with time i will come to grips with it because i have to, hope your well and thank you so so much for taking time out to respond xx

[suzie1]

they have now decided to perform a lumbar puncture, not sure when but have to say i am very nervous

[Marco]

Most people do well with a lumbar puncture, especially women. It's us crusty old men that tend to have more problems.

Just plan some downtime after the procedure and prepare to lay flat for a while. If you get a headache you'll need to be in a flat position to relieve the pain. Also have caffeinated beverages available.

Again, most people do not have problems and I hope you're in that group.

[cleobear72]

Hi suzi1. I had a lumbar puncture on 2013 and was very nervous too. To my relief, my experience wasn't bad. It wasn't pain free, but on a scale from 1-10, it was about a 4. My Dr kept talking to me the whole time so I knew what to expect through the whole procedure. Dr had me lay flat for about a 1/2 hour after the procedure before I could go home and my instructions were to lay flat until the next day only getting up to eat and use the bathroom and drink lots of caffeine. She told me that the caffeine helps to raise the pressure in your spinal fluid to help prevent the headache that can be associated with the procedure. My back was a little tender for a day or so. Nothing more than a little achy. I wish you much luck and please let us all know how it went.

[suzie1]

Most people do well with a lumbar puncture, especially women. It's us crusty old men that tend to have more problems.

Just plan some downtime after the procedure and prepare to lay flat for a while. If you get a headache you'll need to be in a flat position to relieve the pain. Also have caffeinated beverages available.

Again, most people do not have problems and I hope you're in that group.

Thank You again for responding Marco i am not looking forward to it but have to get it done so will just have to man up as they say, i don't have an appointment yet i hope its sooner rather than later

[suzie1]

Hi suzi1. I had a lumbar puncture on 2013 and was very nervous too. To my relief, my experience wasn't bad. It wasn't pain free, but on a scale from 1-10, it was about a 4. My Dr kept talking to me the whole time so I knew what to expect through the whole procedure. Dr had me lay flat for about a 1/2 hour after the procedure before I could go home and my instructions were to lay flat until the next day only getting up to eat and use the bathroom and drink lots of caffeine. She told me that the caffeine helps to raise the pressure in your spinal fluid to help prevent the headache that can be associated with the procedure. My back was a little tender for a day or so. Nothing more than a little achy. I wish you much luck and please let us all know how it went.

Thank you for your reply and reassurance, so far the care i have had has been amazing and i am sure this will be to, i feel better than i did and feel better day by day about this whole being in limbo scenario, to be fair its the childrens school holidays and i don't have as much time to dwell, hope your well x

[suzie1]

Had my lumbar puncture today and you was all correct it was nothing to worry about, have to wait a week or two for the results so hoping they are positive

[cleobear72]

So happy for you!

Hi suzie1! So glad you had a good experience. It's different for everyone I have found out. Can depend on your pain tolerance and if the Dr is good at it along with other factors. Really glad for you. Now, fingers crossed that the results can give you some answers and treatment options that will help. Please let us know how your results turn out. There are so many people here that can relate to all that has happened and is happening to you. There are also people here who truly care about you and your journey. I have found great information here along with encouragement for both the ups and downs. Take care suzie1!!

[suzie1]

Hi suzie1! So glad you had a good experience. It's different for everyone I have found out. Can depend on your pain tolerance and if the Dr is good at it along with other factors. Really glad for you. Now, fingers crossed that the results can give you some answers and treatment options that will help. Please let us know how your results turn out. There are so many people here that can relate to all that has happened and is happening to you. There are also people here who truly care about you and your journey. I have found great information here along with encouragement for both the ups and downs. Take care suzie1!!

Thank you for such a lovely positive post I am a bit sore in my back today but no headache whoop, i find this forum great for reassurance and really do appreciate it x

[suzie1]

Still no results from my lumbar puncture and i am thinking now no news is good news, its all so very frustrating waiting round for results, how long did you wait ?

[suzie1]

UPDATED

Lumbar puncture is normal so relieved !!!

[SNOOPY]

Lumbar puncture is normal so relieved !!!

That's great news, suzie1!

What did you Neurologist think, does he still believe you have CIS of MS?

[suzie1]

That's great news, suzie1!

What did you Neurologist think, does he still believe you have CIS of MS?

I just recieved a letter with the "normal" result and to contact them if any further problems, i have an appt for April, i am so happy because it has been a worry, i don't know really where this leaves me defo not with a diagnosis of MS though and that is great