In the process of MS Diagnosis...

[micheleinnaples]

Hi there! Blood work, two MRIs (Brain and Orbits), trip to Ophthalmologist are behind me. I meet again with my Neurologist this Thursday to get the results of the MRIs. Since I also have back and neck pain, my husband questions why my Doc didn't order a spinal MRI? Perhaps this will be added? Also, my Doc forewarned me that the next test will more than likely be a lumbar puncture. I am trying to mentally prepare for one and quite honestly, my anxiety is at a high level. For those who have experienced one, I welcome your feedback...the good, the bad and the ugly is appreciated! Many thanks to all!

[jackiesj]

michelejnnaples the lumbar puncture wasn't as bad as i thought and read about also.Neurologist had told me id have to lay flat for 24 hrs and to drink ALOT of Mt Dew because the headache would be aweful.Problem was i didn't think twice, had never had DEW and addicted to the caffeine and tried to quit that for over 15 tries....I felt pressure as it was done and that hurt but they numbed the area..Hope that helps...nice to meet you, best wishes...

[micheleinnaples in reply to jackiesj]

It helps...many thanks!

[kris1973]

I’ve had 2 and they were not nearly as scary as they sound. You don’t see the needle because you will be lying on your stomach. I also only felt a prick from the numbing medication and slight pressure. The doctor distracted me by starting a conversation as soon as I laid down so I was more interested in the conversation than thinking about the procedure. Please DO follow their post procedure directions. I had the headache after 1 and back pain after the other one. Both suck (to put it politely!)😂 -Kris

[micheleinnaples in reply to kris1973]

Thank you. This is very helpful. Might I ask, who performed yours?

[kris1973 in reply to micheleinnaples]

micheleinnaples A neuro radiologist at the hospital. It’s a guided procedure (they watch a screen for proper placement). You won’t see anything

[micheleinnaples in reply to kris1973]

Thank God!

[Jeremyhess1980]

I had my first lumbar puncture 2 weeks ago and before hand I was a panicked mess. My neurologist gave me a script for 1mg Ativan which I took an hour before. It helped a lot. The procedure itself was so simple and painless I was worried for no reason. I suffer panic and anxiety attacks daily as it is. No worries just breath. The lumbar puncture reveals a lot so get it if that’s what they suggest. I’m glad I went. Lay flat if you get a headache and drink lots of caffeine and you’ll be fine in a few days

[micheleinnaples in reply to Jeremyhess1980]

I feel much better. Thank you!

[Midgey_Midge06]

The laying flat part is very important. I have heard other peoples stories that didnt lay flat after and they end up back in the ER to get a blood patch. To be safe i laid as flat as possible for a few days. Also the caffeine helps to heal the puncture spot faster.

The procedure is not bad. I asked to see the spinal fluid and seeing it was kinda cool. It really is just this clear liquid but they get sooooooo much info out of it.

Hope this helps! And stock up on the Mtn dew 😁

[micheleinnaples in reply to Midgey_Midge06]

Thank you.

[kris1973 in reply to Midgey_Midge06]

Midgey_Midge06 I asked to see mine also Everything could be a once in a lifetime experience right?😂

[Midgey_Midge06 in reply to kris1973]

Totally!! 😁😁🤣🤣

[mrsmike9 in reply to Midgey_Midge06]

Hmmm... I've had 2 of these and never told to drink Mountain Dew...

[Midgey_Midge06 in reply to mrsmike9]

What did they tell u?

[arealgijoe]

I have a bad back, they had problems just trying to do the LP. They ended up putting completely out to actually do my LP. Other than that I did fine, NO pain, NO headache etc. Mine was done in a horsepital.

I have several other issues, besides MS.

BOTTOM LINE, YES! I am glad I did it, it was worth having it done. It double confirmed my MS Dx.

[micheleinnaples in reply to arealgijoe]

Thank you!

[bxrmom]

I felt pressure when they did mine and I the guy that did mine was having issues getting the fluid to come out. A friend took me to have it done. We went to eat after then I went home a laid flat. Ended up with the worst headache of my life that made me sick to my stomach that I was puking that I ended up in the er twice. The first time they told me I needed to eat and drink fluids which I did while I was in the er and I was released. Back to the er the next day and I got a blood patch and the headache and puking stopped.

Keep us updated when you can,

Jessie

[mhepler531]

No worries.....they are rumored to be MUCH worse than they are. I had no pain or discomfort during the procedure. I laid flat for the first 24 hours after and then laid down, but not flat for the next day. I also drank LOTS of Mountain Dew. My neuro said the concentration of the caffiene is different than any other and it helps replenish the spinal fluid faster.......no coffee, energy drinks, etc.....Mountain Dew. I drank 8 two liters in two days....I was bound and determined not to have the spinal headache (cause the fluid leaks) and I didn't get one. If you do leak a little and get the headache, lay back down flat and that helps it go away. If you get it and it persists, they can do a blood patch and stop it instantly. Drink the Dew and say a prayer and all will be well!!

[micheleinnaples in reply to mhepler531]

Quite helpful. Thank you!

[Iona60]

I had one over 12 years ago and I didn't feel a thing.

[greaterexp]

My first was over 20 years ago, which wasn’t too bad except for the headache. The neurologist just performed it with me sitting and withdrew the fluid quickly. The last one I had was entirely different! I was on my belly at an incline, and it was done slowly by a radiologist. I had a very brief, mild headache for about 10 minutes.

I’d just follow your doctor’s instructions, whatever they are. The headache is NOT inevitable! If you should get one, call about getting a blood patch.

My anxiety was far worse than the procedure. I’ll be praying for an easy experience and clear results. Getting that diagnosis will help you know what you are or aren’t dealing with.

Do let us know how it goes.

[micheleinnaples in reply to greaterexp]

Thank you so much!

[Kenu]

I had mine twenty three years ago at University of Utah. Things went great, just lay down for twenty four hours and plenty of fluids. I did not do any caffeine and no headache 🤕. Felt slight poke for numbing, but nothing else👍 Good luck and god bless 🙏😉🐾🐩 Ken

[micheleinnaples in reply to Kenu]

Thanks Ken!

[suznj325]

I've had 3. I was scared from horror stories! Fortunately, my neuro & her nurse were very calm & sort of talked me through it. Turned out my spine was so tight I couldn't 'curl into position' tight enough--so had to sit on the end of the table & lean/bend over as far as needed--which worked out well because the doc had my husband stand in front of me..so I leaned into him & held/squeezed his hands. I think that calmed me more than anything. The area was very numbed for the procedure & I felt only a slight pressure. Staying flat afterward is vital to not getting the headache!! I even laid as flat as possible in the car ride home. Had some soreness, but nothing worrisome, the next day. I wasn't told about drinking Mountain Dew...but I understand the reasoning! Best advice: don't forget to breathe!

[micheleinnaples in reply to suznj325]

My husband will definitely be with me. I may ask for something to help me relax beforehand. Thank you for responding!

[Rndcowart]

Luckily mine was uneventful. A little pressure with the needle. Remember to follow the post procedure instructions. Best of luck

[micheleinnaples in reply to Rndcowart]

Thank you!

[mrsmike9]

I've had 2 and was scared to death for the 1st one! The 2nd one I was way more relaxed even though I had to lay on my left side (the dr. was used to doing it with people laying on their right side) because my latest fall had broken my right upper arm in 4 places so I couldn't lay on that side. He had me curl up in a fetal position and really pull my knees up with my hands to spread the vertebrae.

You feel a little sting when they numb it. Definitely bearable. The next thing is pressure when they do the actual puncture. I was told to lay flat for 4 days, only carefully getting up to go to the bathroom. I made sure I had perfect posture going home and never had the headache, either time, they warn you about.

If I was told I had to have another, I wouldn't freak out because it's really not as bad as you would think. My husband, however, thought it was terrible because he saw the size of the needle! (I never saw it, thank goodness!)

[micheleinnaples in reply to mrsmike9]

Very helpful and thank you!

[Midgey_Midge06 in reply to mrsmike9]

I was told 4 days as well to lay flat. I had forgotten til u said that. And i laid flat in the car ride home. Didnt have the headache at all

[bavery207]

micheleinnaples my experiences mirrored everyone else. It was not such a big deal, mine was performed in a hospital by a radiologist. The only thing I might add is to also drink plenty the day BEFORE the procedure. That helps you have plenty of fluid the day of the procedure. Good luck to you,

[micheleinnaples in reply to bavery207]

Helpful advice. Thank you.

[janetb1968]

Hi micheleinnaples I had a lumbar puncture in hospital here in the UK in January it did not hurt at all the only stinging part was the local anaesthetic before the procedure. Please don't panic and drink plenty of caffeine drinks eg: coffee cola Dr Pepper to help to stop spinal headaches 😊😊😊😊😊 I didn't get a spinal headache and laid flat for 24 hours. Being in hospital helped a lot but it's the UK so it is mostly done in hospital. I was an in-patient on my neurologists ward. Also had lots of blood taken, CT, visual evoked potentials and lots of walking about with neuriphysio. U will be fine my love I promise and there was nobody more anxious or fearful than me xxxx ,😊😊😊😊😊

[micheleinnaples in reply to janetb1968]

How sweet. Thank you!

[cljones]

micheleinnaples I agree with everyone that the most important thing to lay flat for 24 hours. I thought I could lay back in the recliner. NOT! I got the severe headache that lasted 3 days and I had to go back for the blood patch. That is what hurt. They didn't tell me to drink caffeine either. The lumber puncture wasn't bad at all.

[micheleinnaples in reply to cljones]

Thanks for your advice!

[ssdw1958]

For the spinal tap. Oh yes when they say lay down flat on your back after your spinal tap DO IT take it from someone who didn’t listen. I decided to do laundry a big NO NO lay down for three days who cares about the laundry. Because it will still be there. And if someone comes over to visit move them off the couch and lay down. I got this headache as big as my house and let me tell you I don’t have a big house. And one more thing drink plenty of water before the exam the spinal tap.

Ok one more thing I would have the MRI on your spine your in the tub any way get it done all at once. When they put you in the MRI I have them put the cover over my eyes earplugs in. If you have never had a MRI this one thing I had done I ask them not to call out how long each picture is going to be. You wanted to know so I did.

Good luck 👍 you’ll do fine.

[Hali12]

Good morning michelennaples. I’m in the same boat as you are. I’m actually having a lumber puncture today. This the second time. I had one years back. I too have had lots of blood work, 2 ct scan, 2 MRI. So I know what you are going thru. I having been suffering from headaches for month now.

[anaishunter]

I was afraid of the Lumbar puncture too. It ended up being a non-event for me and I wish you the same - no pain during or after, no headache. I drove myself home and only had minor soreness the next day. Staying hydrated probably helps.