This Is MS Multiple Sclerosis Knowledge & Support Community

I had a great job last year, loved it. Full of energy, happy, no problems. However at the beginning of September I started feeling nauseous, getting sick at work, forgetting my calculations, slurred speech, exhausted. So of course went to my Doctor and told him what was going on. Meanwhile at work, getting sick and having fevers, I ended leaving because I just wasn't dependable anymore. I was very upset.
After that, I started noticing that for no apparent reason I was waking up with bone pain, numbness in my hands, vibrations that started in my groin area and eventually throughout my whole body when I would move my head down to my chest.
My Dr. scheduled an MRI and no lesions, disappointed I was. Knowing something strange was going on, scared. He prescribed Neurontin. At first seemed to be working and then it wasn't. I'm always tired. Sleep all day, up all night. Slurred speech, brain fog/impaired consciousness, bone tenderness, hard to empty my bladder fully.
Still nauseous. No deficiency in Vit B. However my left hip is slowly deteriorating. I'm 31 years of age with a 3 year old.
I'm lost. My appt isn't until March for the Neurologist?

If I could get some insight and advice, that would be wonderful.
Thank You for letting me share.

Hi,
Lets start by looking at what you know.
I'm not sure MS is your problem but you obviously have something. The fevers are indicative of either a viral or bacterial infection. What have you been tested for? Where is the bone pain?
What do you mean by sick at work?
I presume you mean that when your head tilts forward the vibrations are worse. Do the vibrations continue at the same level all the time or do they get worse and better?
Does it feel like something is pulling in your back when you tilt your head?
Is the numbness in your hands just the hand or is it the whole limb?
Numb can mean a lot of things. Do you mean altered sensation or without sensation? Are they cold?
What do your fingers feel like when the hand goes numb?
What does your neck feel like?
What does your back feel like?
Apart from your hands, what do your arms feel like?
What do your legs feel like?
Does the vibration feel symmetrical or one sided?
When say your hip is deteriorating do you mean you are starting to limp or something else?
What does your stomach feel like?
Are your bowel movements normal?
Does not moving around make you feel better or worse?
You have trouble sleeping at night. When do you go to bed what happens? Do you just lie awake in the dark or what do you do?
When you say tired do you mean no energy or just sleepy?

I have some thoughts but I don't want to lead you. If you can flesh out the picture a bit it would help.
Did you go anywhere unusual in the last year or so?

Regards

Thank You for the reply.

Where shall I start.
The vibrations are throughout my whole body. I do have muscle spasms and also body stiffness that sometimes it takes awhile for me to notice when laying down. My neck is consistently killing me, which causes me to have headaches.....not severe headaches, just an inconvenience. If I crack my neck (sometimes) then I will have an episode of alerted consciousness.
My eyes hurt, the light hurts, and my vision has completely changed quite quickly.
I have tremors everyday in my hands, weakness in my legs, constantly cold. My hearing has changed. Memory totally sucks...
Bruises on my hips from loss of balance. My ears have been drained way before this, so that isn't the issue.

Bowl movements are not normal. Usually constipated. My spine always hurts. I have to make sure my neck is supported greatly when sleeping or I will wake up with a stiff neck.

OK,

What did the doctors say about your fevers and being sick at work?

Regards

He did a whole bunch of blood work and said everything came back normal. I'm actually in the middle of switching Doctors as we speak.

hi and welcome, icabod! i'm going to point you to two very recent topics that might be useful reading:
info including bloodwork stuff and the pitfalls associated with the word 'normal': http://www.thisisms.com/forum/undiagnos ... ml#p232184
sample questions: http://www.thisisms.com/forum/undiagnos ... 25880.html

Thank You very much:)

no problem i'll be interested to hear if you can share any more info about yourself based on the discussions you see unfolding in parallel.

as for the vibration when you bend your neck - sounds familiar. have you read about lhermitte's sign? may indicate an active c-spine lesion. my spinal lesions were classic b12 deficiency lesions. although my usual tests were low normal, i rarely did a proper washout prior to testing, so my stores were not truly reflected in my long term blood work.

the literature is not conclusive but there are hints re spinal cord degeneration with normal b12. case study:

Sub-acute combined degeneration with an initially normal level of vitamin B12: a case report
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2769328/
"Initial vitamin B12 level was normal." "His repeat vitamin B12 level was 41 pg/ml (normal; 200 ph/ml)."

i think what happened here may have been a scenario similar to mine. i had 'normal' b12 when diagnosed, but was supplementing. i had previously done a clean test out of curiosity and at that time my b12 level had been undetectable. if stores are low in the background, whatever you've eaten or supplemented in the days leading up to the test probably really clouds the picture.

b12 may or may not be part of your personal scenario. and as you may have read by now there is waaaaay more to think about when it comes to ms nutrition, and making sure your day to day routine doesn't put you at increased risk

Welcome to ThisIsMS, Icabod1612.

Others have asked good questions to get a better picture of the situation. Please let me add a couple:

Your symptoms began in September; did another event occur at that time – illness, accident, dental work, new medication?
You have had an MRI, you say there is no deficiency in vitamin B – was this determined on the basis of a serum B12 test alone? Are these the only tests that have been done?
Do you have a list of all tests done and the actual number results?

I have no medical background, but it seems logical to me to start with the basic understanding.

I honestly think every test has been taken. I'm not allergic to anything, that was 4 pages long. I've been tested anywhere from HIV to Lyme Disease. I failed the coordination test at the Hospital when I had my first "episode" of brain fog. I couldn't even talk. Thankfully my roommate was there to talk for me.

I'm just so frustrated anymore.
I did however make an eye appt today.
Talked with my Dr and he is still recommending that I see a Psychiatrist.

Thank You everyone for your insight and concerns. I really do appreciate it

The only thing that came back abnormal in all of my blood work, which I'm consistently getting done :/ is I have high cholesterol

Hi again,

Based on what you have said, I think you need to break your problem down into three issues-
1) you became ill, complete with fever and malaise
2) you have fatigue and can't make enough energy
3) you have neuropathic pain

So if we deal with them one at a time the first thing to do is investigate why you had a fever. At this stage you need to go looking for viruses and bacteria. Just because you no longer have a fever doesn't mean the problem has gone. Check for mycoplasma pneumoniae because it can cause all the symptoms you have. The doctor should try doxycycline or better still azithromycin if you have it. He shouldn't use penicillin, beta-lactams, cephalosporins, vancomycin, sulfonamides, trimethoprim or rifampin. They wont work because they attack cells walls and mycoplasma don't have them. If you take an antibiotic then give it a really good whack. If he gives you a repeat, take it. Herbs can work but dosing and sourcing can be an issue.
As well as mycoplasmas, get tested for chlamydias, bartonella, babesia, lyme and anything else your new doctor can think of. If you have something, let us know. No use talking about the wrong topic.
Also get tested for Epstein-Barr virus. They may report it's not active but we want to know if you have the antibodies.
On fatigue, I'm sure you will hear a lot here so I'll tell you what works for me-
As a starter try this
300mg Coenzyeme Q10 (if you don't find energy improve add 150mg every second day till 600mg and tell me)
2-3000 mg L-Carnitine (acetyl carnitine is fine, maybe better)
4000mg N-acetylcysteine spread across the day (excellent for M.pneumoniae)

On the neuropathic pain. First thing is your doctor will want to mask it. A bit like sweeping the dust under the rug. Some of the medications are addictive, some cause hallucinations and psychological problems. Hiding something is not the same as fixing it. That's your decision to make.
The vibration is something I am familiar with, as are the issues with your hands. I know what you mean by feeling weak from the discomfort. I also feel quite nauseous when it hits. Hard to describe to anyone who hasn't had it. My problem comes from the effects of demyelination. Most medical people want you to roll over and accept the inevitable pain killer but I wont do that and hopefully you don't have to either.

The neuropathic pain you have described most likely comes from high on the spinal cord. What affects you is above the region where you feel it. Most likely it's in the neck down to the thoracic (rib cage) area. It may be nerve compression, it may be demyelination, it may be a lesion. It can be a very tiny spot indeed. You are not completely broken. Muscles can spasm in sympathy and stay locked giving you a secondary problem.
If I can digress slightly, it worth understanding that nerves don't stretch, they move by gliding. As an example, if you move your little toe the nerve that controlled that action extended all the way from your brain, down your neck, back, leg and foot. It's overall length didn't change because you wiggled your toe. The nerve glided along a pathway to move the toe. If there is an impingement then you will feel very uncomfortable because the nerve won't glide. Unlocking these impingements are often referred to as neural stretches but really you are flossing the nerve to let it move. This is what you need to aim to do to get the movement back without pain.
As you have probably locked up other muscles you will need to find someone who can do pressure point massage-probably an osteo or a shiatsu massage person. This is not for a gentle relaxation. It can hurt but you need to do it. See an osteo about neural stretches specific to what they find. Even better, find a Pilates studio but never do a big class. You need to be watched and guided. Don't practice your mistakes. Technique will be important. Try not to stay in the one position for too long during the day. You need to move.

So start with the tests so we build a base of knowledge. You can begin the supplements I suggest (others can chime in) immediately. Also you can try some pressure point massage. If it hurts then that tells you that you have a journey in front of you so you better embrace it not run from it.
Lastly, don't go at it like a bull at a gate. Try and break it down so you can observe what your reaction to each component is. You can learn from that. If you crush all the ideas into one glorious assault you won't know what each bit did.
I'm sure you can get through this with a bit of persistence so stay in touch. There's plenty of ideas in here.
Regards

"... Usually constipated."

For some reason, I had the same problem after my diagnosis. I relied on prunes. If you don't like prunes, your local pharmacy should have numerous products that can help you. Just a suggestion to help in that area.

Be patient and let the doctors do their job. Hope you feel better soon.

Forgot to mention that! I agree with Elliot. Agarol worked for me. Just get cleaned out. Doesn't matter what you use. Once you become regular again you will feel a bit more human and it's easier to stay that way than get that way.

Regards