MS Diagnosis

[jkang]

I have been experiencing a wide range of symptoms that fit the profile for quite some years now. I've had a few MRIs done now and each has shown brain lesions. The radiologist concluded that under the Mcdonald criteria, my lesions are consistent with MS. However, I don't have an appointment with my neurologist for another 3 weeks. I was wondering if this in fact means that I have MS or is it only a possibility. What would I do from here. Having to wait 3 weeks to speak to a doctor just seems like torture. If anybody has any insight, it would be greatly appreciated. Thank you!

[ElliotB]

I suspected I had MS before receiving my diagnosis confirming my suspisions. I assumed the worst and took actions with regard to my health and improving my health as much as possible, as if the diagnosis had already been made. This gave me a bit of a head start.

Is your neurologist a MS specialist?

[1eye]

Your radiology report was exactly the same as mine, except mine didn't even bother to mention MacDonald. I think it's his way of telling your neurologist he thinks you definitely have MS.

I am not a doctor of any kind.

[jkang]

Thank you both for your feedback. I'm not sure if my neurologist is a MS specialist. I was actually referred to him due fainting spells, followed my muscle stiffness with the inability to moves my hands. I didn't even know MS was a possibility when I first saw him

[ElliotB]

The reason I asked if he was a MS specialist because if he was, he would read the MRI himself, otherwise he would rely on the report provided. So it sounds like you may have your diagnosis already.

[cjtmn]

I am in a similar situation. LP, MRIs, and clinical presentation are all consistent with MS. I think the general neurologists exact words were "this really looks like MS." I know I still have a few blood tests that got missed and am meeting with an MS Neuro in 2 weeks (feels like an eternity). I am assuming I have MS, but there is a small part of my brain that is holding space for "it might be something else". I believe from reading up, what is missing in my case are a handful of exclusions (all of which were negative 1 year ago). I definitely meet the McDonald criteria.

My plan is to ask directly at my next appointment if this is a definite diagnosis. It is incredibly difficult to wait! The last 6 weeks feel like a series of 2-week waits for me...

[jkang]

Citing, my case is definitely progressing as yours. I was able to get an earlier appointment with my neurologist. He would like me to have an LP done in two weeks, which I want to drag out and can't come soon enough all at the same time. However, he stated that if the LP comes back negative, he still believes it's MS because it fits all other criteria. And according to him, 10% of MS patienfs do not have abnormal proteins in their CSF.

I have been swaying back and forth from acceptance that I have MS to a small part of me hoping it's something else.

[cjtmn]

For what it's worth, the LP went fine for me - plan on 24 hours lying flat and doing nothing...then another 3-5 days of really taking it easy. I was doing fine until I lifted a crockpot on Day 2...then the headaches began. Lying down alleviated them as did Excederin. Took about a week to be back to how I felt before, but it was manageable.

I wish you all the best and completely relate to your feelings. You are not alone!

[lyndacarol]

I am in a similar situation. LP, MRIs, and clinical presentation are all consistent with MS. I think the general neurologists exact words were "this really looks like MS." I know I still have a few blood tests that got missed and am meeting with an MS Neuro in 2 weeks (feels like an eternity). I am assuming I have MS, but there is a small part of my brain that is holding space for "it might be something else". I believe from reading up, what is missing in my case are a handful of exclusions (all of which were negative 1 year ago). I definitely meet the McDonald criteria.

My plan is to ask directly at my next appointment if this is a definite diagnosis. It is incredibly difficult to wait! The last 6 weeks feel like a series of 2-week waits for me...

Almost a year ago you posted that your B12 level was 380 pg/mL, your CRP was 9.2, but your MMA results were fine. Have you been retested? 380 is a low B12 level. If you have been supplementing, I would think that your GP or neuro would want to know the level today.

You listed the following symptoms a year ago – have these resolved?:
Abducen's palsy
vision disturbances (double vision, distortion)
dizziness/balance issues
tinnitus
spondylosis
headaches
extreme fatigue
stumbling
tingling in extremities


Signs and Symptoms of B12 Deficiency:
Tingling/Numbness
Sore Mouth or Tongue
Fatigue
Anxiety
Irritability
Depression
Weakness
Abnormal Gait
Mental Impairment
Visual Disturbances
Migraine, chronic headaches
Orthostatic Intolerance
Chest Pain
Tachycardia
Difficulty Breathing
Edema
Elevated Homocysteine
Elevated MMA
Stomach and G.I. Problems
Blood Abnormalities
Neurological Lesions
Limb Movement Disorders
Psychosis
Thoughts of Suicide

Several others from your list of symptoms are also signs of B12 deficiency: dizziness, balance issues, tinnitus, stumbling/clumsiness. Strabismus (failure of the eye to turn outward) is also a sign – IMO, this might have been your Abducen's palsy

The tingling in your arm (a.k.a. peripheral neuropathy), which you first listed, is a common symptom in many conditions. The University of Chicago suggests the following investigation for peripheral neuropathy:

http://peripheralneuropathycenter.uchic ... #bloodtest\

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:

Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B

You say that a few blood tests remain to be done – have all of those listed above been completed? Was magnesium ever tested, as jimmylegs suggested? Additional nutrient testing for copper, iron, zinc and vitamin D might also be useful.

[cjtmn]

Wow - I did not expect that anyone would recall my postings from 1 year ago! Both 2008 and 2014 bouts of Abducens completely cleared up, but I was left with dizziness and oscillopsia last fall for about 3 months. Since January, all dizziness and most of the oscillopsia have cleared. MRIs from 2014 showed 1 nonactive plaque in my cervical spine and 2 very slightT2 signals in my thoracic spine. My brain MRIs were normal. I declined the LP vowing to clean up my diet and see if things would right themselves with healthier living.

I have lived with migraines my entire life, and for the first time in many years, decided to stop taking oral contraceptives. That was about 3 months ago, and until this flare up, I have had very few headaches, and nothing that looks like a migraine.

5+ weeks ago, I woke barely able to move my thumb, pointer and middle finger. Over the course of 1 week, I experienced numbness/parasthesia all up and down the right side of my body. I went through with the full workup & have a positive LP (14 o-bands in the CSF only and very high synthesis rate), and several enhancing/active lesions in both my c-spine and brain. I have lost most of the fine motor skills in my right hand and have continued numbness/tingling/generally uncomfortable weirdness from my jawline down my arm and down my torso. And my headaches have made a return (probably stress!).

The outstanding tests are for SedRate, ANA, B12, and 1 other I did not know (FANA?? Not sure...) because the lab forgot to run them (grrrr). From the LP, Glucose was normal, all Lymes tests were negative - everything except the oligoclonal banding, index, and synthesis rate + a slightly elevated WBC came back normal. I will check the other items you mentioned as well.

Thank you for remembering me and asking! I will let you know what the B12 results look like this time around.

[cjtmn]

It's official - I called my doc & learned that the remaining blood tests were normal, so I asked for them to clarify if I am clinically (officially?) Dx'd with MS, and the nurse confirmed it for me.

Regardless, you made an excellent point in another post, lyndacarol, that just because I have MS, doesn't mean other things can't be wonky. I will get the exact numbers and talk to the MS Neuro about other potential deficiencies and supplementation. Thank you, again, for taking the time to respond.

jkang -- how are you holding up? 3 weeks feels like an eternity when you are waiting on answers.

[jkang]

Cjtmn, thats definitely difficult news to get. How are you doing?

Im doing okay. I'm not looking forward to LP, but other than that I'm fine. I've been having excruciating back pain that extends around my ribs and down my legs for the past 2 weeks. Its made even standing difficult at times. I'm not sure if this would be due to MS or not though. I'm just hoping that my neurologist can figure something out so I can get the pain under control

[cjtmn]

jkang - I must admit that I am panicking a bit. I am a middle-aged professional with 2 grade schoolers and an amazing husband. I am already feeling guilty for putting my family through this, and I'm petrified about my future professional life. I really need to think in shorter time spans, or the "what ifs" mess with my head.

I was petrified for my LP, too. Drink lots of water going into it, and lots more when you get home. I will keep my fingers crossed they can find something to alleviate the pain. Has your neuro offered any symptom management options? Gabapentin? Maybe call to see if they can get you something to help you out. Let us know how it goes.

[jkang]

Hi cjtmn, sorry for the long delay in messaging. It feels like my life has a roller coaster for the past year so I just needed some time away from everything. I went away for a month after my LP, which may not have been the best idea cause I was sick the whole time haha. I can definitely understand the guilt that you are feeling. I found out that the LP was positive the day I came back from holidays. All the other tests also came back negative for everything else.

How are you dealing with everything now? Have the "What if" thoughts subsided a little?