Differential Diagnosis? And help..

[arob2013]

Hi friends, looking for guidance...

What the journey this has been.

Chronic back pain..

Bilateral arm numbness in February with visual disturbances, to hospitalization with a semi normal brain MRI (three small white matter lesions), normal spine MRI, normal LP, all labs normal...

Vertigo x 3 weeks

Normal EMG and nerve conduction study. Normal VEP & BAER.

*Ophthalmologist diagnosis of Ootic Neuritis, MS specialist says me no Optic Neuritis due to normal Evoked potentials

Arm numbness regressed to tremors and twitches, to now only intention tremors and very minor twitching

Major left eye weakness and visual disturbances still that increase with heat

**New symptoms... Left side of face & head numbness x 1 weeks.. Dr said go to the ER to be checked out. They didn't do anything except give me another neuroticism exam that the only thing that usually comes up abnormal are reflexes, and pain sensation.

Today I am experiencing right hand (actually just half on my hand) tingling.. Which is very annoying... Hand numbness, and half of my arm just feels sore. My arms have been symptom free for a few weeks now?


Really. I'm venting. I'm getting depressed and irritated over all of these symptoms with no answers and Mayo Clinic basically told me in the ER yesterday there was nothing else they could do at this point since all the tests are negative. I am on my second Neurologist.

MS is apparently now ruled more out then in, and I'm ok with that, but does anyone have any suggestions on where I go from here? Any there any differentials I should be looking into. I'm feeling quite desperate for direction lately and I am trying to remain positive and vigilant.


Thanks, in advance..

[arob2013]

Kyle- The opthamologist diagnosed me with Optic neuritis based on many things; my left eye presented with weakness, significant visual disturbances (big grey spots..), sensitivity to the vertical light, decreased saturation, AND most importantly, a pale optic nerve. I have had TWO VEP tests that have been normal.. The opthamologist said he's helped in MS diagnosis many times and in my chart noted that I have Uthoffs as well (he asked me a slew of questions...) He was honestly, one of the first people so far who has acted and made me feel as thought my symptoms are as significant as I think they are.

When I told the optho about the MS dr saying it wasn't neuritis, he was pretty upset with the MS dr and said very similar things about Mayo Clinic drs. He said if we do not get the answers we are looking for, he will hook us up with one of their neurologist. This has just been exhausting... and expensive. And I AM starting to feel stress at this point, however I know it's limo land induced. I have been battling bad bouts about one a week of depression that I have NEVER dealt with before, so I am trying extra hard to remain positive and manage my feelings. I am even considering seeking out a referral for a psychologist just to have anxiety, etc. looked into and hopefully ruled out to better build my case. ALSO to have someone else to talk to that isn't my worrying husband... What are your opinions on this? I know the diagnostic process and MS alone can cause a lot of anxiety, did you ever seek out assistance?


Sunny- I am still have consistent intermittent arm numbness, muscle pain, and tingling. My back pain is chronic. I keep thinking maybe the root of all of this is the back pain and disc problems, however all of the nerve conduction tests have been normal. My MRI for my spine was "clean" however was done on a 1.5T and was not MS protocol. It did not show any herniated discs, just minor bulging. I'm interested in a stronger MRI... What was the level of strength they used to find yours?

[sunnyinsarasota]

Amanda, You are very smart to take the stand of not letting a doctor say it could just be stress. I am very tired of hearing that, especially from women who say that their doctors say they have too much stress, which may cause their illnesses. Could be, but probably not. Knowing that I was going through a divorce,my neurologist suggested that my horrific back pain may be caused by the stress in my life. This was after he failed for months to help relieve my increasing back pain. You know your body, and I knew mine. I suggested being referred to a pain medicine specialist and that doctor discovered MS lesions at T6 and T7. No wonder I was in such pain! It was NOT due to stress. I would keep looking for suitable answers until your gut feeling tells you that the diagnosis is correct, and then get a second opinion:)  It can take a long time, but is well worth it. Good Luck, Mary

[kwarendorf]

I'm not a doctor, but it seems to me that optic neuritis can be diagnosed based on a visual inspection of the optic nerve. If there is inflammation, aka optic neuritis, it would be visible to the trained eye. The opthamologist did look at your optic nerve, right?

Unfortunately, wait 3-6 months and re MRI is not an unreasonable approach. It's one of the things that can make getting an MS DX a long and frustrating process. I think seeing a neuro opthamologist is s great idea. Optic neuritis is one of the top five presenting MS symptoms and if a second eye doc sees it...

I've been reading MS message boards for nearly 3 years. I have never read anything that makes me want to rush out to the Mayo clinic for my MS treatment.

Kyle

[arob2013]

Kyle,

My thoughts are the same as yours in regards to gastroparesis. A year prior to my gastroparesis diagnosis, I had my gallbladder removed because it stopped the peristalsis movement (which is also nerve related?)

I was seeing a neurologist outside of Mayo Clinic prior to the MS specialist at mayo and he is the one that referred me to mayo. He openly admitted to not knowing much about MS and felt comfortable with me being examined elsewhere. His diagnosis at the time was gastroparesis, arthritis (which was ruled out with the nerve conduction), an inner ear disorder, and migraines... That happened to all flare up at the same time..... :(

I am willing to accept a diagnosis other than MS, however I cannot yet accept "no diagnosis" as the answer.

I was seen by an othamologist who said I had optic neuritis, but my MS dr said because the VEPs were normal, that that was not possible. When I told him this my opthamologist was pretty upset and said I should consider another dr.

My MS dr DID say that if all the recent rests came up negative, we would just have to rerun my MRI in 3-6 months and "wait and see"... Is this an acceptable response?

I see a neuro opthamologist  in two weeks. If he says neuritis as well, do we still say all the eye Drs are wrong and the VEP is right?

Thanks for your responses. I am trying to remain unstressed and having answers to my questions is a great help.

Amanda

[kwarendorf]

Hi Amanda-

I agree with Alex. From what I've read, the Mayo Clinic seems overly difficult when diagnosing MS. It seems there assumption is "It's not MS." and they work to support that conclusion.

Gastroparesis seems like it could be caused by nerve damage. MS causes nerve damage. Blaming other neurologic symptoms on gastroparesis seems a bit back asswards to me. Can you see doctors outside of the Mayo Clinic?

Kyle

[arob2013]

Alex,

Thanks for your response.

I have had the gamut of blood tests run; B12, ANA, paraneoplastic, myasthenia gravis, etc etc. I am on my second Neurologist and this one is an MS specialist at Mayo. She has not ruled out MS, but says she doesn't feel it is at this time. She is testing for all mimicries.

When I was in the ER at mayo with facial numbness, the on call neuro basically said they all the necessary tests have been done, and because I have gastroparesis (diagnosed 2011), that it could be causing these "transient" neurological episodes. I can't help but feel like that is a "we really don't know and this just sounds like it makes sense" answer. It was noted in their report that my pupils were different sizes, and this is the second dr to comment on that. Their notes stated that because of the transient, or shortness in nature of my symptoms (arm tremors for 4 months is short??), that this could be a reaction to stress. I'm trying to process all of this. I am willing to neuro hop and allow the time for a proper diagnoses, but I am not willing, at this time, to accept stress as the answer?..

Any further advice or comments are so appreciated...

Amanda

[HVAC]

If it were me I would find another Neurologist. The Mayo Clinic does not have the best track record with diagnosing MS. Find a MS Specialist not all Neurologist know much about MS. ERs are not the best for diagnosing anything. They do not have the time to look into anything well.

Have you had blood work to rule out B 12 defieciency, Lupus and such?

Looks like you have been through the standard. Often it takes time. It took me 6 Neurologists and several years.

If you look at the health pages on the bottom there is a bunch of information.

Alex