I had my second visit yesterday to my neurologist (first visit was two months ago, haven't seen him since). He said that my MRI is normal, and the EMG "abnormality" was actually fine too. He used phrases like: "well you could get on the waiting list for the muscular dystrophy clinic", and "well we could do a muscle biopsy and see if it shows us anything". It just felt like he was feeling his way through the dark, and pulling me along with him. He wished me well and sent me on my way.

The information I presented to him, along with dialogue, looked like this:

DAILY SYMPTOMS: Blurred vision, eye pain, muscle weakness when walking, low libido, memory loss / cognitive issues, heat feels terrible and makes symptoms worse.

WEEKLY SYMPTOMS: chills, dizziness, brain fog

EVERY 2-3 MONTHS SYMPTOMS: "buzzing" legs feet hands, unsteady walk and afraid of falling.

The neuro explained that the MRI of my brain and cervical spine was normal. "If there was something neurological going on it would have shown up by now."

But dam*, whenever I walk more than a few blocks I pay dearly for it, in all kinds of ways! Blurry eyes, seized up painful leg muscles. And if I *really* overdo it I wind up feeling depressed afterwards.

I'm trying really, really hard to remain peaceful in this. But I am feeling lost.

RP,

I am so sorry that you are going thru this. It is, however, not unusual. There are many stories here that start like yours.

It would be good to see an MS neurologist or any good neurologist over time. In another 6 months and another year, at least. And anytime there is something new occurring in your body.

Stay around, no ID card required here.
ANN

Restorative, I have to suggest that you look into Porphyria testing. Many of the same symptoms are common among people with Porphyria. Doctors may tell you it's too rare to be found in you; but after I was dx'd, my pcp found two others with Porph in his practice.
I will never know for sure the relationship between Porph and MS, but I think Porph causes some MS, thus my MS diagnosis nearly 30 years ago. I believe now that I essentially "have" MS due to Porphyria attacks on brain. This is a VERY complex subject, and diagnosis is often done poorly due to doctors and even labs not knowing techniques.
If interested call Rochester Mayo Clinic Porphyrin laboratories for protocol for testing.

I lived in the limbo you are in for all of my youth. Exactly like you. And your ability to meditate and find calm in the midst of this chaos will help you. Be blessed.

Porphyria is a new term to me, I will read and learn about it.

By some lucky cast of fate, Mayo Clinic in Rochester is actually only about 45 minutes from me. However, I have 60% coverage, which at Mayo, isn't a lot. I will also ask my PCP about it.

Thx friends : )

RP, the Mayo Clinic sounds like a good idea, if you can manage it, or, a new MS specialist Neuro, who knows all the criteria for DXing MS or ruling it out.

RP, when I suggested calling Mayo porphyrin labs for the protocol for testing for Porphyria, I didn't mean to go to the Mayo clinic as a patient. I meant to get the protocol for testing from the lab where your specimens would be sent. Then any doctor can order the tests. But you have to watch out for the lab which sends the specimens. Since you are close to Mayo, it might be a good idea, if you test, to drive your specimens down in person. Much more likely to get a true result to your tests. However, the Mayo clinic neurologists can certainly send the test for you if you consult them. It's very expensive to go to Mayo and I know the 60% coverage is not much with their high bills, and they tend to want to test you for everything in the world....which in your case could be a benefit, as you are in limbo. Just saying that you can get this tested without going to the Mayo Clinic clinic. Their porphyrin labs are the main test labs for this disease.
I was at Mayo Scottsdale this year and last year, concerning my other disease, Polycythemia Vera. Their neuro was terrific! I forget his name, as my main doctor there was the hematologist, Dr. Cammoriano. But I was sent to the neuro too because of the complete workup Mayo gives. It would have cost thousands if I had not had Medicare and Aetna.
I had p32 shot in March for my other disease, Polycythemia Vera. It cut down my blood platelets.

RP
While I am sympathetic about your current status, I wanted to give you something to think about.

To take advantage of your undx'ed state, maybe consider purchasing long term care ins. Once you get a dx that option is off the table.

I would have likely been initially off put if someone had suggested it to me 18 years ago, but hindsight is 20/20.

Best to you

Thanks missj, my employer is actually an insurance and benefits provider. I can see I have some LDT coverage as an employee, but have just inquired with my HR department about exactly what my current coverage is and how might I increase it.

Thx for the suggestion! It is a great idea to consider.

Here's what my HR department says about our LTD coverage:

Full-time associates are automatically enrolled in LTD upon 90 days of hire. LTD is 100% employer paid and provides 60% of base salary upon a qualifying disability. There is no option for associates to increase their coverage. If you wanted additional coverage, you would need to seek this through an individual policy.

you are welcome. that is great.
Check your LTD policy and see if it has the option of converting to LTC a some point (age 65)