Forever in Limbo

[corsaro]

I have been in limbo for seven years now. My neuro (at Kaiser) has now stopped testing me and told me to check in with him once a year??

I have had some spots in previous years on my MRI's but he has written them off as artifacts. My LP was done in 2008and was fine. Nerve damage shows up in both arms on the Nerve Velocity Test.

My symptoms include blurry vision, numb hands and feet, balance problems and vertigo (I use a cane and walker), cognitive problems. Everything gets worse in the heat. Face is constantly tingly.

I'm not sure what to do now. I am still working full time but I don't know how much longer I can do it. Without a diagnosis I'm sunk.

Has anyone had problems this long before getting diagnosed?

[gomer]

While I was in LIMBO for less than 1 yr, I had problems of unknown origin for DECADES. I had to go on SSDI in my 30s! I went thru many hells over those decades, not knowing why and no one listening. It was decades later in 2009 a new eye doc opened up the MS can-o-worms.

Gomer

[football-mom]

Are you allowed to get a second opinion at Kaiser? It might be worth your while to pay out of pocket for a second opinion if they don't.

My specialist doesn't accept insurance at all, so I pay him out of pocket, but my insurance company accepts all of his prescriptions snd orders for tests, so everything else still gets paid for.

[corsaro]

So you can apply for SSDI on symptoms alone? I thought I would have no shot without a diagnosis. I did apply a few years ago but never heard back from them. When I applied they said I made too much money. I explained that I would have to stop working because I was getting worse and worse. I got the feeling you had to be detitude before you even apply.

[gomer]

Simply having a Dx for almost anything except end-stage kidney failure is not slam dunk. in other words you can have a Dx, but that alone may haves little if any meaning. What does seem to matter most is SYMPTOMS and how it prevents you from being gainfully employed.

One could have a half dozen fully diagnosed illness and destitute and still not qualify.

GOMER Sir Falls-a-lot

[Pipes123]

I would demand a second opinion.

[tspaulding]

I would speak to your doctors re: symptoms and SSDI. I was not asked about income, so that makes no sense to me.

SSDI depends on how many credits/ years of employment. I had to write down past 15 yr work history. I left my job when I was 35.

If not sure about your work credits and SSDI then I would call social security office.

[123four]

Limbo Lander

I am in Limbo too. Sounds like you need another doctor. Any doctor. Keep going till you find one. Call the MS society and naybe they can suggest some names. The navigators are really good.

[egadsdonna]

17 Years in limbo with Kaiser!

I've had MRI with lesions since 1995. Finally 2013 after some coaching, I approached the Neuro with my husband as a witness, told him to either diagnose me (I presented a list of symptoms with re occurrence dates) or put it in writing that he declined. I was on Medicare and they sure don't want the government looking into this diagnosis practice. I made it clear that I was going outside of Kaiser to a MS sanctioned specialist. He wasn't happy, but he finally diagnosed it. The medicine like Avonex is $4300.00
approximately a month, Kaiser has to pay the majority. It's purely economics. Also each time I see him, my husband goes with me to the appointment and the Neuro tries to undiagnosed me. It took 3 months before I saw any improvements, but I'm slowly feeling less fatigue.

[Kaitar]

Cervical/Lumbar MRI/CT

Corsaro,

Have you had any imaging on your spine? There are many other things that can mimic MS with neuro issues that will not show up in your brain MRI. I am in limbo and have a list of things that need ruled out some of which seem to fit you better than they might fit for me.

Like cervical myelopathy (sp?) from disc disease or spinal stenosis; B12 insuficiency; parathyroid problems; RA?

I think you need another visit to a new doc!

[corsaro]

Thank you all for your replies. I didn't realize the medication was so expensive (egadsdonna). It would have never dawned on me that Kaiser could possibly be not moving forward due to economic reasons.

I have asked on more than one occasion to have an MRI on my entire spine. My Neuro refused saying I only needed it on my brain and neck. I realize this is the central nervous system but could MS show up on the lower spine as well?

[SNOOPY]

Hello corsaro,

I have asked on more than one occasion to have an MRI on my entire spine. My Neuro refused saying I only needed it on my brain and neck.

Although some with MS have had a MRI of both the cervical and thoracic spine, most common is the cervical spine and brain. In MS, lesions found on the cervical spine can cause symptoms from that point down.

Nerve damage shows up in both arms on the Nerve Velocity Test.

It is important to note this test is not part of the diagnostic criteria for MS (McDonald Criteria), but is for other conditions/diseases.

If your results were abnormal then other conditions/disease should be considered and your concern of MS may be unfounded.

Information about the NCV and possible conditions/diseases under which this test can be abnormal:
http://www.nlm.nih.gov/medlineplus/e...cle/003927.htm

[puglover]

I will never understand why it takes so long for a dx. Mine took almost 20 years. I had bad mris, vision test all different kinds of symptons but no dx. I finally received a dx 2 years ago when I had not expected it. I know how frustrating it can be.

The best thing that you can do is keep a record of all of your test and medical records and keep fighting for a dx. if you dont think this doctor is trating you well find another one. Another thing that I found helpful was writing down question for the doc before your appt.