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Leading up to a possible diagnosis of MS

Hi everyone.

I am a 24 year old female. I woke up on a Saturday morning in December and my left knee was completely numb. I thought maybe I had slept on it wrong. I was getting ready to go out of town for a short vacation. So I jumped in the shower, and when I was shaving my left leg I felt pins and needles times a thousand. I thought that was weird but again, told myself maybe my leg was asleep. I decided to just go about my days until a week later, I realized it wasn’t getting any better. By that time my left leg was numb, loss of sensations, but certain things triggered crazy pins and needles sensations, burning sensations. So I decided to go to the ER. Doctor did a Ct scan on my brain and spine. Said all looked normal but said to see my primary care doctor on Monday and to be referred to a neurologist. Which is exactly what I did. Leading up until the time I seen the neurologist, more symptoms appeared. Both legs were now having sensations, although mainly my left leg. Sharp burning pains in my back and abdomen. A sharp pain in my left cheek. I lost total hearing of anything going on around me in my right ear for about 20 second, all I heard was loud church bells. (Sounds totally crazy, I know). I have fallen down the stairs once. I have an eye floater in my left eye. My reflexes aren’t as good in my left leg as my right leg. I’m extremely fatigued. Feels like I never have energy. Occasional headaches. About 1 week after these symptoms started, I had an intense amount of pain come on from my waist down. I cried for 4 hours straight, couldn’t get comfortable. When it first started I was in the car and any bump we hit in the road was excruciating. I’ve never felt pain like that before. I felt like my lower body was about to completely shut down, I finally had some relief after taking a pain pill and falling asleep. Also.... for the past 2 1/2 years I have had chest pain episodes. Right where the ribcage meets the chest bone, it was an intense amount of pressure. Made it so hard to breathe. I went to the ER twice because it felt like a heart attack. Doctors have yet to figure it out. But I’m wondering if it possibly has something to do with what is going on now. Fast forward, I seen a neurologist. She sent me for blood tests to rule out vitamin deficiency and Lymes disease, all came back okay. I had an ANA test done, that came back okay. So she sent me for an MRI of my brain. This is where things became interesting. The technician pulled me out of the mri machine and said “how long have you known that you’ve had MS?” And I was appalled. I explained that I didn’t know that. So I called my doctors immediately. They apologized and said they don’t know that I have MS, but based on my MRI, I have 5 small lesions on my brain. Doctor said she was going to talk to a MS specialist. Called me a few hours later and said “it comes down to this.... the lesions are nothing, or they are MS....we’re sending you for a Lumbar Puncture”. I’m terrified to say the least. They should be calling me in the next few ways to schedule the LP. Anyone else had similar experiences or symptoms or advice and would like to share would be greatly appreciated. Thank you. 

Hi xoknichole
I have read a lot of posts on this site and they say the same thing every time, a neurologist can only diagnose MS no one else.
I can tell you about a LP. I had one in January. Stock up on cola and or coffee and lay down in bed for a few days. The LP was fine I had a great neurologist who did my LP, I didn't feel a thing the blood test was more painful I still have the bruise on my arm, I was able to catch a tram back home, I then went to bed and stayed there until Sunday 2 half days, didn't get the headache which can happen if you don't lie down long enough.
The caffeine in the coke coffee or red bull, helps a lot. A good excuse to take a rest.
I have legions in my brain the neurologist told me that I had demyelinating disease like legions in my brain. I was given an appointment without asking for a second opinion, out of the blue. I am now waiting for my second MRI appointment and I have been given an appointment with the neurologist in April. So now I am in limboland until I see the doctor. I hope things go well for you.
The doctor that did my LP asked if I went on doctor Google which I had but only for demyelinating disease, I also said that I went on sites like NHS and patient UK or sites like these, she said that that was ok and that this site sounds very good. I hope things go well for you.
Kay

Thank you for responding and explaining some of your story. I hope things go well for you and you finally receive some answers as to what has been going on. I’m terrified of a LP, but hearing good stories about them helps. I’ll definitely take into consideration the caffeine afterwards. And plenty of rest. I don’t think I’m scared of what the answers may possible be. Be wise I know it could always be worse. The hardest thing I’m having trouble with processing is knowing I’m 24, and have lesions on my brain. Those are damaged spots. I don’t know why I’m having such a hard time believing that. It’s just not what someone expects to hear. 

I have MS

Hello

It sounds like you’ve had a short, very sharp shock to your system. 

It may well be that you do have MS. Certainly if the MRI has shown demyelinating lesions, then it sounds likely. I am very sorry if that’s the case. MS sucks. 

It sounds like the LP will be the final nail in the diagnosis. A lumbar puncture is a fairly unpleasant procedure, in my recollection. But the best thing about it is that it only happens once. 

The procedure is that a small patch on your spine is numbed whilst you are laid on your side with your back curved (and knees hunched to your chest). A needle is then inserted into the space between two vertebra and some fluid is extracted. I remember (um, 22 years go) it being a weird feeling, that someone was actually sticking a needle into my spine!! But actually painless. 

The general advice these days is first to drink lots of caffeinated coke (take a bendy straw with you), and second, to stay laying down for at least an hour afterwards. The point of both these things is to avoid a seriously nasty headache that can last several days.

Once you’ve had the LP and the results, honestly the worst will be over. Yes, you may get a horrible diagnosis, but sometimes that is better than the fear and worry that you have now. 

Let us know what happens.

Sue 

Ssssue, thank you for commenting. I am scared of the LP because I am scared of needles. But I am strong and I know this needs to happen in order to have a diagnosis. So I will get through it. I’ll definitely drink caffeine afterwards, because I do not want to end up with that headache.  It would make sense if it comes back that I have MS, given my symptoms. And if that’s the case, I believe I’m at peace with it. I just want answers so I can move forward with my life. Things could always be worse and that’s what I tell myself to get through the days. 

 

Hi Nichole,

I had my LP quite a few years ago & felt no pain. All the work is done (while you are on your side) behind you so you won't be able to see the needle & hopefully won't feel much, just some discomfort.

Lay down as long as you can afterwards & remember the caffeine fix, with a bendy straw as you'll be laying down.

Try not to worry, this procedure will only be needed once.

Rosina 

Rosina, 

Thank you for writing. My anxiety gets the best of me when I think about a needle going on my spine. But you are right, it is only needed once. I know I can get through it. 

Hi everyone, I explained that the doctor called me the other day and told me what was seen on my MRI but I finally received my full MRI report findings today.

FINDINGS:
No intracranial hemorrhage, mass effect or brain edema. Diffusion-weighted
sequences show no evidence for an acute infarct. There are approximately 5
punctate periventricular white matter T2 and FLAIR hyperintensities. Some
are pericallosal suggestive of but certainly not diagnostic of multiple
sclerosis.. No other areas of abnormal signal intensity in the brain.
Gray-white matter differentiation is normal. The ventricles and extra-axial
spaces appear normal. There is normal flow void within the intracranial
circulation. No areas of abnormal enhancement.

The visualized paranasal sinuses and mastoid air cells are clear.
Unremarkable orbits.

Impression
Approximately 5 punctate periventricular white matter lesions
as described above. These are nonspecific but may be associated with MS.
Continued MS workup recommended.

I have MS

Hi

It sounds like you are really no further forward. It might be MS. Or it might not be. 

At least the lesions are ‘not diagnostic’ of MS. 

Roll on LP and results. That will be interesting.  

I know you’re nervous about the LP, but don’t be. It’s one of those things, like a root canal at the dentist. You dread it and hate it while it’s happening, but it will be done and finished with sooner than a root canal.

Sue

 

Ssssue,

Yes, I am dreading the LP but it’s needed. Anxious to move forward and receive some results. I will definitely keep you updated when I know more. Thank you again for the support.

Hi,

Received a call yesterday. LP is scheduled for this Friday. Anxious to get it over with and possible find out some results.

I have MS

Good, not too long to worry about it. It’ll soon be over. 

Sue

hi there :)

I saw the other posts in this thread, and although I am not scared of needles I was very much not looking forward to the LP.

However having been though it (just over a month ago now, 08/01/19), I can tell you it is not at all as bad as you think. You won't see the needle unless you ask, they literally make you lie on your side with your knees to your chest. You feel no pain at all, I mean it feels odd because well it's a sensation we aren't used to. But there is no pain, and you don't see a thing unless you ask (they asked me if i wanted to see the fluid and guess at it's colour). In all honesty i was more worried about the headache after, but the doctor told me they had produced a new needle that helps reduce the chance of headaches, as well as having a drink of cola after too. They did get me to lie down for an hour before they let me go too, but I had no headache at all, and was out of the hospital pretty much as soon as that hour went. 

I wont lie, I did just lie there with the thought process of let her do her thing, and the sooner it's over with the better so i lay perfectly still for about 40minutes (it took longer for her to find the exact spot because it isn't exactly a big gap to play with) but once it was over all i had was a backache for a few days and nothing more. 

I'm still waiting on my results, but i hope you get at least some clarity from yours! 

Di

Hi everyone,

 

I had my LP today. The needle they used to numb me hurt so bad, and stung so bad. Almost made me feel like I was going to pass out. Ha. The LP itself; I did feel some pain and a lot of discomfort. But I got through it. Told myself my goal was to not cry because I knew if I cried, I wouldn’t be able to keep my nerves under control. And I didn’t cry. I am in a lot of discomfort still, my back is very sore. I did not get a spinal headache. Thank goodness. Now it’s a waiting game until I receive answers. And rest this weekend.

I am sorry to hear that your LP was painful, rest up this weekend and take tablets to ease the stiffness from your back. Now that you have had a MRI and LP you are just waiting for the neurologists appointment, this may take time or if they want to start you on medication for your relapses he may get you in sooner. Or you can phone the secretary of the consultant you are with to see if you can have a cancellation to see him quicker.

You are one step closer to finding out what it is, I am still waiting for my MRI appointment  I have already have my appointment with the neurologist in April. So I think we are at the same point. Although you can phone up now, I can't as yet because of the MRI. 

Do rest up though if you can, you still can get the headache, but I know that sometimes you can't because of family commitments.

 I was lucky with that as I don't  have children and was able to rest up. It's still  very worrying even though people say not to do that, you still do. It's the not knowing that you can't change and every letter that arrives is it THE letter, then when you do get it it's the waiting for the appointment to arrive.

 So your nearly there one step closer than you were. Hope it goes well and soon too. Kaysmiley

 

Hi,

Unfortunately my spinal headache came on yesterday morning after I got up out of bed. I’ve been battling it ever since. It was so bad last night it made me nauseous and I ended up getting sick. I am at work today, and it is still so bad. Any suggestions on what helps a spinal headache? This is awful. Worse than any headache I’ve ever had before.

Thanks,
Kelsey

I have MS

Hello Kelsey

If you’re still at work, go home and go to bed. 

It's possible that your LP caused a worse than usual headache. Occasionally people need what’s called a ‘blood patch’ to seal up any leakage from the place where your CSF was extracted. If your headache isn’t any better by tomorrow, stay at home and phone your doctor / MS nurse / 111 for advice. 

In all likelihood, your head will improve, but you should be laid down in bed. Rest will help. Going to work will not. 

Sue

I don't think that there is a pain medication that can take, not that I know of, one thing I was told that if you do get the headache you have to lie down straight on a bed and it will go away with time. I was lucky that I didn't get the headache but I didn't feel a hundred percent and got all the things in the house that needed to be done on the Wednesday and had my LP on Thursday. I am so sorry that you got the headache it will pass. Drink a lot of coffee and full strength cola sugar and caffeine. Kay