Multiple Sclerosis Community

Hi, I should add that since last year I have developed other symptoms. Just not sure what they are related to.

I get a creepy crawly feeling and it's always across the back of my head. And I also experience and tightness across my chest and back. This comes and goes, but it feels like i'm being squeezed really tight. I also experience a great deal of fatigue. Some days are ok and others are so bad, I have a hard time getting out of bed.

Any help or insight is greatly appreciated!

Hi,

Did they diag you with CIS and what drug do they have you on? I was 1st diag with CIS and then I changed Dr's(my 4th) 2mos later & she changed my diag to RRMS. My evoke potentials & LP were negative. I did though have 3 lesions on my brain. According to the Dr she said my history & symptoms were more then enough to diag me, even if all the other tests were negative.

With MS the earlier the treatment the better. Are you seeing an MS Specialist or a reg Neurolgist?
Hugs
Tammy

I was diagnosed with MS in August and had the evoked response, MRI, nerve conduction and some other test that measures your response to light flashes while your eyes are closed. All my tests, except MRI, came back negative. It is my understanding there is no test that can definitively diagnose MS. My neurologist told me all those tests are basically to rule out any other conditions. Since my MRI showed "non-specific changes" and there was no other cause for it such as diabetes or smoking, and all the other tests ruled out other conditions, along with all my symptoms led to diagnoses of MS. I also had a lumbar puncture about 15 years ago and that came back negative but seems I've been living with MS all this time and did not know it.

I have some of the same symptoms as you, tingling/numbness on left side of my face when I get stressed (stress increases MS symptoms) which I thought was a stroke when first happened a couple years ago. I also have tightness across my back and in my lungs and tops of my feet. I get a very heavy, fuzzy feeling in my head too and lots of fatigue. I slur my words and go into slow motion and have trouble speaking/moving, etc when I'm overly tired.

Hope this helps : )

Hi Tammy,

Thanks for your response. There was a medication I was on when I was admitted to the hospital. That was Oct 2009. I don't remember the name of it but it made me feel like a zombie. So my neuro took me off that and put me on neurontin and skelaxin. Otherwise I just take vitamins and i'm trying to eat better and exercise.

I've never been diagnosed with CIS, what is that? Just the fibromyalgia and currently I have a diagnosis of "possible" MS. I only ask because all my testing came back negative. There were no lesions or spots on my MRI's, LP was negative, evoked testing normal and I had the EMG with nerve conduction. That was normal also.

I'm not sure if my neuro is a MS Specialist or not, but he's actually done alot more for me than any other neuro has. I've been seeing neuro's off and on for the past 5 or 6 yrs and not one of them has done this much testing on me and none of them even mentioned it could be MS. So I don't mean to sound like i'm not comfortable with him, I just have been reading so much about MS since he's sort of diagnosed me with it that it sounds like it usually shows up on at least one test to come to that conclusion. Or maybe I was just hoping that he was wrong.

Thanks again,
Renee

Hi valkat223,

Thanks for responding. Any info helps tremendously. I've been so worried since all my symptoms started to worsen and become more frequent. I've been having symptoms off and on for about 15-18 yrs. But in my mid 30's they became stronger and more frequent after the birth of my 1st child.

Very stroke like, I actually thought that's what it was. The first time it happened, the numbness and tingling, I was driving with my newborn in the car. I pulled over and had to call 911. I was brought to the hospital and admitted. Testing was done and I was released the next day. That was 2005. The neuro I saw never did a MRI and told me it was stress or depression. I spent the next 4 yrs being told a bunch of different things.

I only question my dx because all my tests were normal. No findings in my MRI's, LP, evoked testing or EMG. I don't think I had the light test. So far I haven't been formally dx with MS, just a "possible" MS.

Thanks for your help!!

CIS stands for Clinically Isolated Syndrome, 1st neurologic episode. I'm sorry I misunderstood I thought you had a positive MRI.
CIS is an episode that last over 24hrs and evidence of lesions in one or more areas.

At this point just make sure you keep track of your symptoms & how long they last. Best of luck & keep us posted.
Hugs
Tammy

Hello Renee,

Yup...you are stuck in "limbo land" right now, with plenty of MS-like symptoms yet no clinically diagnostics to "prove" you have MS.

You have so many of the classical symptoms of MS that your neuro could diagnose you with MS without any of the clinical tests indicating it. If your neuro feels strongly that it is MS, then you should start with treatment right away.

Dave

Hi Renee

The only thing I can add to what the others have said is that you could find an MS care center , gather up all your records and have them reviewed for a second opinion,as in MS or CIS or something else alltogether.

Actually another thing is were your MRI's of the brain with contrast , it is injected in the middle of the MRI and did the do the cervical and thorasic spines as well.

Sorry to see you stuck in limbo but do not give up on this even if you feel better because if it is MS it will continue to progress even when you are symptom free. It is up to you to advocate for yourself and sometimes it has to be done a bit forcefully .

Rory

Hi there!! I'm new to this forum, I was diag Oct of last yr with Fibro-I have prog been getting worse though, terrible fatique in arms and legs. simple things like holding a plate or mail is fatiquing.. I now am being referred to a neuro,, Dec 1st. What if any meds did they put you on for FIbro,-mine put me on Neurontin 300mg 3xday. I will see if it helps any, was on lower dose did nothing. I know the wait can be heck.Esp when you know there is more going on then the Fibro as if thats not enough. Good luck! Keep me posted

It is possible. I have had MS for the last 20 years, however I was not diagnosed with MS until about 10 years ago. I started with the numbness and tingling in my legs and then a weakness in my left side. I had all of the tests including an MRI and a spinal tap but nothing could be confirmed for the first 10 years. I now walk with a cane but the doctors have told me that I have done well with the length of time that I have had this disease. I contribute that to exercise and diet. I have eaten healthy for years..eliminating high fat foods and now I eat only the good fats such as olive oil and eat lots of fruit and vegetables and lean meats. I have now eliminated most processed foods as well. I did low impact aerobics with weights for years too but eventually gave up because I now have such fatigue. I feel that this was a huge mistake and I am now trying to add exercise back into my life but it is limited to 10 minute intervals 3 times per day. I also take vitamins including omega 3 fish oil and lots of vitamin D. My body was so low on D it was ridiculous! Most people with MS are lacking in D. Most importantly..don't ever stop moving even if you have to exercise from a chair because once you stop..it is soooo hard to get back on track. Good luck and God Bless!

I had a MRI and it show a lot of white matter. Had a LP. It came back ok. Does that mean I don't have MS. The back of my head feels like creepy crawly feeling. I've got my head sore where I 've rub it. Is that a sign of MS. I was inbarest to tell the doctor that. Should I. I've also had two strokes in legs, that they thought it may of been attacks of MS. But now the doctor wants to wait and take another MRI in 6 months. She has MRI test alway back to 2001. It shows the white matter getting worst from 2007 on. What would you do? I also fall a lot

Can Someone help me on my problem. I'd love hear what someone else thinks.

Hi Shirley,

It's very difficult to comment on what may or may not be MS. This is because there are SO many possible symptoms, but each one could also be attributed to other illnesses.

If you are worried, I have included a copy of what Rory would advise ... it's good advice:Rory26312 responded:
If you suspect MS as the cause of your symptoms you need to try the following.

1 Find a neuro who specializes in MS or an MS care center, trywww.msneuroratings.com for patient reviews on a state by state basis.

2 Be prepared to undergo all testing the require which may include,

A MRI's of the brain and cervical spine with and without contrast to look for active and inactive liaisons.

B Possibly a lumber puncture/ spinal tap to look for proteins and O-bands in the fluid around your brain and spine.

C Evoked potential testing to check the speed of your nerve responses, any delay can indicate inflammation.

D A complete neuro workup and a review of your medical history, try to keep a journal of your symptoms and how long the last and any triggers you can think have.

After all this which can take some time, you can hope that a specialist has enough info to make a diagnosis or at least rule out MS altogether, all though there are no guarantees as we often see false negatives or inconclusive results

For now find a specialist and follow his/her advice , let us know how you are doing and know that most of us have been where you are and indeed some on here still are there.

Hope this helps and please know that many on here have been where you are and indeed others are there with you.



I hope this helps, best wishes,

Carol
PS Whilst It isn't strictly necessary to start a new post of your own, I've a feeling that's why your questions have been missed. Starting a new post means that you have more chance of it being spotted.

Have two different posts somehow combined here? I wrote my reply to Shirley and, prior to my reply, only Shirley had written???