Newly Diagnosed - Questions on diagnosis and symptoms

[UpstateFan]

Hi everyone, i was recently diagnosed and i'm trying to make sense of some things.

First the diagnosis - Things began for me on Feb. 22, when i woke up with no feeling in my right leg. Walking fine, but no feeling. After going into see GP who forwarded me to a Neurologist, i have had a bunch of tests, solumedrol infusions and other stuff, the following infromation was found out.

-Lesion on my spine at T7, assuming this to be the source of my symptoms.
- Brain MRI had a T2 Hyperintensity that is non-specific
-IGG index is high in spinal tap
-Oligoclonal Bands >5 without any in serum
-Cervical MRI Clear
-VEP test negative

My Neuro believes strongly that I have MS, but says she says i have the option of waiting for another attack if i want to delay taking MS drugs. She feels that I should however. I thought you needed a second attack to diagnose MS....but on the other hand what i've read (and how i feel compared to common symptoms of MS i've read) makes me inclined to agree with her. Anyone have this kind of experience? Is it normal to be diagnosed after just one attack?

On to symptoms. Assuming i have MS, my initial attack began as just numbness in the right leg, to numbness throughout my entire lower right quadrant (back, groin, etc). Then it felt like someone was wrapping up and twisting both my legs for a few days with horrible moments of fatigue. Then eventually it lessend over the 3rd week. I'm now left with a vauge burning feeling in the right leg, and a very painful hypersensitivity to any physical contact with anything cold (ice, cold water, railings). Would i be correct in assuming i'm past the attack and this is what remission would be like, or is this still the attack (6 weeks out) Is it normal for MS symptoms to mildly change and migrate during remission?

Thank you for bearing with me on all of this, and i appreciate any advice.

[TLC_31]

It may not be "normal" to be diagnosed after one attack, but it's not unheard of.

I can't interpret your test results; is there something there that causes your neuro to only "believe strongly" rather than diagnose you? Why the doubt?

In the meantime, as the doubt is hopefully erased by further testing and/or consultation with other doctors, there are advantages to attacking MS with a DMD as early as possible, and I would certainly advocate that.

[CougarMama]

I was diagnosed after one attack and a classic "MS" MRI by an MS specialist. It was quite a shock after being told my numbness was caused by a pinched nerve and my tremor was an "essential" tremor. I never had a spinal tap or anything of that nature. As shocking as the diagnosis was to me it also felt right. I have been on a DMD ever since and have never regretted it.

Good luck!

[andi b]

I too was diagnosed at age 60 after only one episode of ON back in Sept of 2010. VEP was normal, no LP but very "classic" looking lesions (and lots of them... > 40) in all the right places in my brain. I was surprised but not totally shocked, as my younger sister and two first cousins also have MS.

I've been on Avonex for about 15 months now and have very few bothersome symptoms (and none motor), although I'm beginning to notice what seems to be some spasticity in my feet and lower legs, along with weird skin sensations, tinnitus and some cognitive weirdness. It could be a lot worse, I guess!

Andi

[andi b]

I too was diagnosed at age 60 after only one episode of ON back in Sept of 2010. VEP was normal, no LP but very "classic" looking lesions (and lots of them... > 40) in all the right places in my brain. I was surprised but not totally shocked, as my younger sister and two first cousins also have MS.

I've been on Avonex for about 15 months now and have very few bothersome symptoms (and none motor), although I'm beginning to notice what seems to be some spasticity in my feet and lower legs, along with weird skin sensations, tinnitus and some cognitive weirdness. It could be a lot worse, I guess!

Andi

[OHSnap]

I'm with CougarMama.

I was diagnosed in February after one attack in October - luckily I had an MRI from three years ago for comparison. My doctor at Cleveland Clinic told me I could wait but strongly recommended I start DMDs immediately. I chose Copaxone, and after a month of shuffling paperwork and waiting for Shared Solutions and Medco to get everything straight, I started a week ago.

My initial experience on Copaxone has been fine - very mild burning and very slight residual soreness at the injection sites. No other side effects. But the best part is that I am doing something proactive to stop my disease. Waiting idly by for another attack seemed fearful and nerve-wracking. Taking control of my disease by giving myself an injection each day makes it a battle that I have a part in.

[UpstateFan]

Thank you for your input. It makes me feel more comfortable about the diagnosis. I'm still going to get a second opinion, and do some research to find out if i want to stay with my current Neurologist for the long haul, or if there are better MS specialists within a reasonable distance from me. But it is nice to hear others have had the same experience.

[Sir-Voor]

I was Dx almost 10 years ago after having some short 30sec muscle spasms a few weeks apart, which got me to go see a neurologist.
Two week, MRI of the brain and spin tap later, after my first appointment with the neurologist I was Dx.
There has been ups and downs, med changes, diet and exercise changes, but I’m still going strong, work full time, and feeling great.

I highly recommend you starting an Anti-inflammatory/high antioxidant diet, if you have MS it should help prevention and current symptoms, if not it will do your general health good and likely may help what even issue you do have.
So start replacing sugars in your diet with spices and enjoy.

P.S. On the anti-inflammation I find NutritionData.com has helped me the most in learning foods and spices IF Inflammation Factor. Also I find Penzeys.com a good place for spices.

[Justsayyes]

Your spinal tap results are similar to mine, high IGG index and positive for O-bands. (I don't have a count....) My MRI was not conclusive, could be MS or migraines. I did have an abnormal VEP, normal EMG.
The spinal tap clinched my diagnosis. I support your decision for a second opinion. Good luck and let us know what happens!

[MarkLavelle]

I don't think of myself as ever having had an "attack," but I developed paresthesia in my feet that spread over my whole skin in the course of about 3 months. That's still my main sx, with some minor spasticity once in a while for variety...

My 1st neurologist called it MS after all the usual blood tests, spinal tap and one set of MRIs (one 11mm c-spine lesion and one small "possible" brain lesion). I was given the marketing materials for the CRAB meds and told it would be a good idea to pick a DMD and get started on it.

I went to Stanford for a 2nd opinion, and they weren't willing to call it MS yet.

The next set of MRIs showed at least one new lesion in the brain, and last year both docs agreed that I've got MS. The Stanford neuro says its one of the mildest cases he's seen, and both he and my physiatrist suspect my MS may have been triggered by the chemo & radiation I had back in the 90s. Which always makes me wonder if I have 'real' MS, but I take the Copaxone anyway...

[a.nukem]

I was one of the "lucky" few who was diagnosed after only one known attack, so it does happen. I had double vision as my only symptom for about a month. Solumedrol infusion once a day for three days and it cleared up a few weeks later I believe. Though I hate the DMDs (slight needle phobia and distaste for having to rely on ANY medication for anything) I would suggest them as soon as you can. They can be costly in the long run, but depending on which one you are on you may be able to get assistance with the cost as well so it isn't as bad.

If you feel you need a second opinion, get it. Don't be surprised if you end up going through a few neurologists though. It can be difficult to find a doctor who works with you the way you want, but when you find one it makes a huge difference in the way you feel about your care. Good luck and I hope you get the answers you need.