Could It Be MS???
 

Hi all! Need some opinions please on what in the world is wrong with me. In November 2011, I woke up and my right arm was numb and I was unable to grasp anything at all. I went to the doctor and had the steroids and an MRI of the cervical neck, without contrast. Out of work due to being unable to lift anything for approximately 10 weeks. The thing is, I still have what I call flare ups with this arm and now it has moved to my left arm. The pain the numbness the difficulty doing anything with my arms. Been to 3 different neuro's, 2 who said they didn't know what it was but if I was having problems in 6 months come back. Haven't been back to them. The neuro I am seeing now has started me on Neurontin which has helped, although I have had to increase my dose 3 times. I suspected TOS temporarily, but the EMG and NCV studies were totally normal. Had a brain MRI and another cervical MRI, just to rule out MS, which came back normal. After looking through family hx, found that my grandfather had MS and according to death certificate that is what he died of.

Anyway, I have recently been back to the neuro I am seeing now and he has agreed to go ahead and do an MRI of brain again with contrast again, although he says there will be no difference in results. He also said that if I want he will do a spinal tap as well, I agreed to that. New symptoms that have appeared over the last few months are facial numbness that comes and goes. The first time this happened it lasted all weekend. Now it just comes and goes for a day or hours at a time. When the numbness happens, I lose taste on that side of my mmouth and things feel funny to my tongue. My right leg has been weak feeling recently. Low back is killing me, pain up and down my leg on right side, feels weak although I haven't actually had it give out on me. Constantly going to urinate, and if I don't get there quick I will pee on my self. Is there any help out there? Any one have any suggestions as to what I can do? I am on steroids now for the "flare up" so any help would be appreciated.

I've read of people having Sxs of MS without lesions present in brain. Did you have a MRI of your spinal column as well?

They did not do MRI of spine, just the brain and cervical area. No lesions found. I have been looking at all the info out there and I was under the impression that MRI with contrast is the best bet. Not sure if I was reading that right or not.

Tara505,

Hi and welcome to NT/MS Forum. :)

You asked if this could be MS. I think it could. OTOH, there are many, many things that mimic MS (B12 deficiency, Lyme disease, for instance).

Regarding MRI's, the standard is w and without contrast. While you are still on the table, they come in and give you IV contrast.

I am glad that your symptoms are being treated and hope your symptoms improve. It is good that you are seeing the same neuro so s/he can evaluate your symptoms over time.

Regards,
ANN

I have read about the lyme disease and B12 deficiency. I am going to contact my GP and get these tests done just for the heck of it. Any other suggestions that I should ask for? I thought about a sed rate and ANA but not sure if there is anything else I should be looking for. Thank you for all your answers and opinions.

There are 2 Lyme tests out there. I have read that the western blot test is more reliable than the ELISA test.

hi sorry for hijacking with this rambling post but i've had a year long saga..

starting off with vertigo twice over a five day period last feb, followed by roughly 3 months of intense dizziness, that occasionally returns. Also have base of skull pressure/pain down to my T1.. Also have had eye pressure sensation, along with just an overall strange feeling.. and eyelid fascics that come and go. TBH I've always had odd feelings in my right eye, but during the dizziness it was more pronounced.

My left shoulder's had bouts of a intense fatigue feelings at times, and percieved weakness, but no actual weakness.. strength on command always. Currently it's OK. I'll mention now that I've done a lot of stuff that could irritate my rotator cuff, like rubbing my neck when it was aching for half the day, pulling wires, turning wrenches, etc.

My leg however has started to bother me.. around november I started feeling a kind of stiff sensation in the left leg.. and today it's i would say a degree more irritating now. I can walk, walk fast, sprint, stand on the leg, strength etc, but it randomly has some sort of conduction error when I'm on my feet, and my knee will feel slightly unstable. Il also have fasciculations, although somewhat randomly. Seems that my outer quadricep is the or one of the culprits, along iwth the shin muscles.
with regards to the legs I sit a LOT as I'm an internet addict, and have worn out the cushioning on my computer chair more or less.. i've had lots of problems with my lower leg going to sleep as I stood up from it. Also have had dull pains arise that made me concerned about dvt.. also have had pain at the sacral spine area.. I also have used knee pads to crawl around in crawlspaces for the past few months.
Anyway I haven't had extended periods of numbness.. so far any numbness has been the result of sitting only.. but this feeling in the leg is completely foreign and does not go away. I don't feel any pain, only this weird feeling.. *seems* to come and go from one moment to the next, so I hope that rules out MND

As far as imaging is concerned: Got a brain MRI w/wo contrast in may - the report indicated absolutely nothing. I've looked at it myself and AFAIK don't have chiari, and there's no white blobs anywhere in the tissue area. Also recieved an x-ray that showed mild arthritis in the T1 area according to the report.

At this point I know I can only wait and see (and hope it goes away), but from what I'm reading, MS is capable of creating all of my symptoms, even the neck pain.. Oh yeah I also had a 'ms hug' experience after contorting to put a plug into my tv on the wall - a week of feeling like I got stabbled under my shoulder blade.. that was roughly last january before all hell broke loose for me. Oh yeah I've had a constant cascade of varying ailments and symptoms over the past decade.. I really hate growing older !

Apologies if my post is unreadable. Just trying to sort this whole thing out in my mind.
THANKS,ROB

Welcome Rob.:) Are you seeing a Neurologist? Have you had all of the tests for possible MS? If not then you should and if so and nothing pointing to MS has been found, then you're on the waiting list, so to speak.

MS is sometimes difficult to pinpoint and diagnose, so after all the tests, we wait and see.:rolleyes: It's exasperating but, sometimes, the name of the game.

In the meantime your Neoro or PCP can treat your symptoms, I would think.:)

Take a deep breath and try not to stress out, as that only makes symptoms worse.:hug:

Rob
 

Hi Rob! I am also playing the waiting and guessing and waiting again game! No fun, I am waiting for results from my latest brain MRI. I wanted to ask you though have you had your vitamin levels checked? Pain and weakness can be from Vit D deficiency and a lot of neurological conditions can be from B12 or B1 deficiency. Just a thought and you probably have but if I could help you I want to. I have all the same go on that you do and just found out I have a pretty bad D deficiency! Probably won't solve all my problems but it's nice to finally have something

Welcome KeepingFaith, Nice to see you.:)

Thanks for the responses ! sally and keepingfaith
I had a blood workup in march and everything seemed within the set tolerances... will need to find the report however to know what they tested for. I remember Vita D was ok, thyroid and liver were ok

I've taken b12 supplements although in the powdery form, along with Vitamin D supplements, along with a lot of others.. on and off however.

Like everybody I guess, my cognitive processing of the symptoms probably make them worse than otherwise. I'm going to wait a few months before contacting the PCP, unless I have noticeable progression.


With luck our posts will live on as search engine hits while we move on in our lives and our symptoms go away!

MRI results
 

Hi...so I got my latest MRI results but I need some help interpretting them

since the nurse was less than knowledgable. First MRI was August of 2012 w

an w/o contrast and showed nothing. Last MRI was 1/21/13 and showed a

couple areas of white matter which the nurse kept saying was common in

people with migraines. I never have migraines. I also have a capillary

telangiectasia. She said for that it was usually harmless. I asked her what

the doctor wanted to do and she said he just wants to check my brain again

months from now. I really couldn't get anything else out of her. Prior to

getting the MRI done the doctor had said he would want to do an LP. There

was no mention of that when they called me for the results. I am very

worried as I have been for 1.5 years since my symptoms started. I'm just

looking for someone to help me understand this and why they don't seem to

be worried about them. Should I get a second opinion? My life is going

downhill so fast. I have progressively worsening symptoms in my legs and

feet involving tingling, burning, and numbness. More recently weakness in my

ankles. I also have shooting pains in my elbow and feet sometimes. I had

burning tongue for like 2 weeks that has gone away now thankfully. I also

have spells of vertigo that last a few days and bouts of blurry vision that

lasts weeks at a time. Thanks for reading and any advice you are willing to offer!

Hi KF, I would deffinately get another opinion, if that is all this Doc has to say. Don't you have an appt. to discuss the results with this Doc, or is he finished with you now?:rolleyes:

:hug:

As far as I know he is finished with me. I only spoke to the nurse and she didn't ask me to make an appointment for follow up. They seemed to not be concerned about the findings. But I am. Mainly because I have so many horrible symptoms and find it difficult each day to go on. And for the fact that this MRI showed something when the first showed nothing.

Hi Tara,

I'm sorry you have been having these problems. It sounds to me like you need to ask the neuro for a MRI of your spine. I'm almost certain (and people here can correct me if I'm wrong) that you could have no lesions on your brain but have them on your spine and be having all the symptoms you are suffering with. So get the full deal. I only had brain first and then a few weeks later had the brain and spine. Just know it takes a long while in the MRI machine!

As far as the SED rate and ANA, those likely won't tell you much without having them in conjunction with more specific tests. When I got diagnosed I saw a rheumatologist because I was having fevers -- that confused the neuros a bit but they still thought it was MS early on. I had a moderately elevated SED rate and slightly elevated ANA and slightly elevated tests for something called Antiphospholipid Antibody Syndrome.

Anyhow, the rheumatologist called a nationally know MS specialist he knew because he wanted advice about the meaning of these tests. The famous neurologist told him it was not uncommon to see MS patients with slightly out of normal range blood tests, especially in a flare. So basically he said they weren't relevant enough and I had MS. I think SED rate only checks inflammation in the body.

Anyhow, good luck and keep us posted.

Keeping Faith -

I would go for a second opinion. Look for an MS specialist if you can. Even if this neurologist is an MS specialist find another. I think I went through 3 doctors (plus a Mayo clinic visit) before deciding the fourth one was the best - empathetic and skilled at the same time.

Also, has anyone suggested a spinal tap test? That will give useful info too.

Don't be afraid to switch doctors if you feel you aren't being heard or getting what you need. Be proactive. YOU know what's going in your body better than anyone else. If something feels wrong and you aren't getting help, find someone who can help you.

Good luck! :hug::hug::hug:

Thank you!
 

Natalie - thanks for your response. I am switching insurance next month so that will be a good opportunity for me to find another neuro. Unfortunately right now I have HMO so I can only see this two people (i think). I'm 25 so I'm fortunately pretty inexperienced with all this doctor and insurance stuff. Learning fast tho :( My neuro did say he could do a LP but that it would cause me a lot of bad headaches and might not be conclusive. More recently I have been suffering with terrible weakness in my legs and feet. I can't walk or stand for long at all. Good luck to you!

Tara - I am so sorry you are going through limboland. It may take a while for any lesions to appear. Getting tested for Lyme, B-12, and vitamin D is also a good place to start. Sometimes it takes time to get a diagnosis for some conditions. Hang in there and keep pursuing a dx. Don't give up.

Rob - Do they check to see if you had a slipped disc and/or pinched nerve? I ask as you seem to be having lower back issues that could definitely explain the lower extremity issues as well.

Keeping Faith - You say there was "a couple areas of white matter." I'm not sure what you meant by this as white matter is a normal part of the brain. We all have white matter. Did you mean a couple of areas of white matter lesions? Additionally, migraines aren't always felt and they do cause lesions. Some people have auras without migraines. I'm also wondering if the capillary telangiectasia is causing some headaches and thus the lesions. Not sure if that would happen. I also would ask to be referred to a vascular specialist to check that out. Do you experience any type of headache? Keep after your dr. and do follow ups regulary. Something is definitely going on. Keep a journal of you symptoms if you can and bring that to your next appointment. Keep your GP/PCP involved and informed. Make an appointment with him/her to discuss some of the symptoms as well.

to tkrik
 

Thanks for your response! Here is what the test results read: Focus of T2 hyperintensity present within the periventricular white matter adjacent to the atria of the left lateral ventricle as well as in the posterior aspect of the right thalamus. The test is marked abnormal and needs follow up. They seemed less concerned with the telangiectasia when they called me. They just wanted to monitor it: small subtle enhancement seen witin the posterior aspect of the let cerebellum that may represent capillary telangiectasia. Neoplasm is felt to be less likely but cannot be excluded.

I would try to get a second opinion. The periventricular white matter is a common placee for MS lesions to appear. Additionally, I still would ask for a referral to a vascular physician as well as another neurologist. The statement "neoplasm is felt to be less likely but cannot be excluded" would send me straight in to another neurologist. Please consult with another neurologist for a second opinion as well as get a second opinion on your MRI. They do have neuroradiologists that can review your MRI.

Let us know how you are doing.

May I ask why the neoplasm comment is bothersome? Sorry I am new to all of this...