Specialist in MPN + Neurology?

[George1976]

Hello all,

I'm looking for an MPN specialist who might also have some experence in Neurology. I'm willing to travel pretty much anywhere in the US.

Any recommendations?

Thanks

[hunter5582]

It is unlikely you will find a MPN Specialist with advanced expertise in neurology. Certainly you can expect a MPN Specialist to have knowledge about the neurological manifestation of MPNs, but not about other neurological issues.

Suggest consulting at a MPN Center based out of a major hospital center. This helps to ensure collaboration between specialists. I see a MPN Speciats and a Neurologist at Johns Hopkins. The care there is outstanding. I still need to be my own case manager, but collaboration is enhanced when the doctors work in the same system.

Here are two lists to consult.

pvreporter.com/mpn-speciali...

mpnforum.com/list-hem./

[George1976 in reply to hunter5582]

Thanks Hunter. How did you locate your neuro at Hopkins? Did your MPN doc recommend one?

[hunter5582 in reply to George1976]

I found them independently on my own. I also have another condition, Neurofibromatosis Type 1. The NF Specialist I see is a neurologist. The NF1 has always been relatively indolent, but at age 63, we found a brain tumor. This required surgery, so I also have had contact with a neurosurgeon at Johns Hopkins.

Unfortunately, three of the leading MPN Specialists have left Johns Hopkins, leaving only a few left to provide MPN care. Hopefully they will rebuild this sub-specialty over time. There are remaining excellent providers, but fewer than before. The Neurology department is excellent. The care I receive at Johns Hopkins is outstanding.

While you indicate that you can travel, it works better for your specialty care to not be too far away. There are centers of excellence in more than one area of the country. Finding a center in which to base your assessment and treatment needs should be doable, but you do need to do some research.

Wishing you all the best.

[George1976 in reply to hunter5582]

Thanks Hunter. I was seeing Dr. Spivak at Hopkins for 6 years. He was a fantastic doctor. My luck with neurology there has been frustrating so now I am now willing to travel. The rarity of MPNs means even neuros at top notch hospitals likely never even heard of them much less consider how they could be causing neuro problems. I’ve got some very strange neurologic symptoms that dont fit into categories even for medical institutions like John’s Hopkins. I’m going with my gut which is telling me my blood problem is involved with my neurologic problem. One neurologist not affiliated with a major hospital came the closest to diagnosing me when he said I have an immune mediated problem affecting my back causing my feet to be weak. He reported his findings to the neurologist I was seeing in at a major research hospital in NYC who quickly shot down the possibility. Most docs politely blow me off and say, ah, you have neuropathy, there is no cure, go away. I’ve been hoping a research hospital could think outside the box but so far I’ve not found a doctor who is interested enough to do so. When I mention ET they either don’t know what it is or they think they know but it quickly becomes clear they don’t.

[hunter5582 in reply to George1976]

I also used to see Dr. Spivak. He was a great doc to see for MPNs. I am hoping that JH will rebuild the MPN Center to the level it used to be.

I am wondering if there is someone else at JH who may be of greater help. It is a great place to get care, but no one doctor ever knows everything. Sometimes you have to find the right match. That does include going outside of that institution when needed.

I would not expect a neurologist to know much about MPNs. They are too rare. That is why I would try to base complex care out of an institution with MPN and neurology centers. It sounds like in your case, an immunology center as well.

It may be that your next stop is with an immunologist. Immune related neuropathy is a disease that can be treated. It is not something I know much of anything about, but I am sure you could find a doctor who is dealing specifically with this condition. Perhaps start with the docs who are doing research into this condition. Look for the published articles and see who keeps coming up. Here are a couple of samples.

ncbi.nlm.nih.gov/pmc/articl....

nature.com/articles/s41572-...

I am wondering if your docs told you the specific form of neuropathy that you have. Neuropathy is a broad term describing different types of disorders that affect the nerves. Inflammation can play a role in neuropathies. Chronic inflammatory demyelinating polyneuropathy (CIDP) is one type. inflammation is also a feature of MPNs due to the deregulation of the JAK/STAT pathway. There is merit to your sense that the MPN and the neuropathy are somehow related. It may be contributory, each condition exacerbating the other. That sort of more subtle interaction is often missed. I have experienced that myself and usually have to explain it to the doctors on my care team.

The body is an integrated system. Even "unrelated" disorders are related in that they are occuring inside of a closed system, your body. Something else you may want to consider is to consult with an Integrative or Functional Medicine doctor. These docs look at the body in a holistic way and tend to think out of the box. I see an excellent Integrative/functional Medicine doc. She is very clear that systemic inflammation is a condition that needs to be managed. This doc has been helpful in managing the inflammation I experience. Here are a couple of links to this kind of doc.

fonconsulting.com/resources...

ifm.org/find-a-practitioner/

Wishing you all the best as you sort this out.

[George1976 in reply to hunter5582]

Thanks Hunter.

[EPguy]

My experience matches what Hunter said, Neuro and MPN Drs don't much overlap. There is a good amount of overlap between neuro and rheumatology. I've got all 3 of these in my care team.

Neuro seems somewhat a black art, rarely are there clear causes and direct treatments, esp for the peripheral sort you have. Many such can heal over time however.

[ladyanello]

Yes, doubt one doctor, but MD Anderson in Houston has superb MPN specialists and access to every type of doctor. I found them wonderful.