Northwestern: DIAD
 

So far I haven't been diagnosed with anything for which they offer treatment, and, of course, SFN is not a diagnosis in itself. These are the conditions that they treat: http://www.stemcell-immunotherapy.com/about.html. I've yet to be diagnosed, but I am looking more and more at stem cell treatment as the cure, if all else fails, in particular natural remedies. It seems stem cell transplantation is the only treatment that's not geared toward symptom management. I still don't know enough about IVIG, but it's certainly not quite on the level of stem cell transplantation. It may not even be offered for my condition here. Chemo seems to be a necessary part of the transplantation procedure, but given how poisonous it is, I plan to do more research into stem cell transplantation without first administering chemo. I've also been doing more research into other locations, including the one in Russia, which is between one half to one third of the cost. There are also other locations, such Singapore, etc. The success rate is impressive. I'm a ways off from all this, but I need to do the research now when I can in case things suddenly get worse. I also don't have the money at this point. Just some thoughts.

Question
 

Where do they implant the stem cells?

It may depend on the condition somewhat, but I think the norm is via an IV into the blood stream.

for the adipose stem cell therapy I had (often called regenerative medicine) they injected stem cells via IV into my arm (bloodstream). They also injected stem cells and prp into the areas of nerve damage, in my case my lower legs. They tried to inject them into the tibial and peroneal nerves.

Has it helped you Notherngal?

Cliffman :)

With the first treatment I noticed less numbness, but no strength increase as I had hoped for. I don't have pain with my pn, so I'm not able to answer on how it would affect pain.
I just had the second treatment in December. A week after I had it my Dad was hospitalized and passed away. So between the stress of that and it still being early I haven't noticed any changes since the second one.
I was originally going to try to have 3 treatments, around 6 months apart, as I had read someplace that 3 were often needed for immune disorders. Now, I'm not sure I will go through with the third one unless I get a decent response from this one.
They are expensive, I paid 8k for the first one and 6k for the second--I paid a little more to have the plasma rich protein injected with the stem cells as it is suppose to increase their chance of survival. Insurance would not help at all as it is experimental.

Northerngal, thank you for this information. But I mainly wanted to say I'm sorry for your loss.

Northerngal,

I'm so sorry to hear about your Dad... My sincere sympathy.

Cliffman :)

I start my work up next week. It affects almost every part of my body too. My left foot is the worst and it is making its way up my leg. Already disabled from bilateral Meniere's disease, now this, and erythromalalgia is tossed in too. In so much pain. Allergic to Effexor and Cymbalta and others that put me in serotonin syndrome. Lyrica is doing nothing at the present time. Having trouble breathing now...not sure if it is autonomic issues or anxiety issue.

I have almost full body SFN so I fully understand. So sorry to hear of the other conditions and that you're not able to find any relief from the meds. is there anything that helps with the pain and what is your doctor saying about the breathing?

Cliffman :)

Waiting ...
 

David - I live near Northwestern Medical Center and am waiting for a diagnosis from a Neuro who diagnoses and treats CIDN. My symptoms closely resemble CIDN; do I need a diagnoses before contacting NW's center for stem cell treatment?

I'm not sure really how they would proceed. Is CIDN just CIDP? Regardless, I assume you'll need an actual confirmed diagnosis before any treatment there or elsewhere. You can always call them, but they will almost certainly want a confirmed diagnosis. Good luck!

Oh, thank you. I have polyneuropathy confirmed by two EMG's a couple months apart; I get confused with the alphabet-soup for all of these diseases. I think it may be Chronic Inflammatory Demylinating Neuropathy, but am waiting to hear and asked them to send me results of the EMG. So far all blood work is normal, spine and brain scans are not showing MS. Symptoms are bilaterial ... very similar and first EMG mentioned likely axonal and/or demylinating neuropathy. Muscles definitely are affected; walking is difficult. Funny, but b12 shots which I take every 3 days plus other nutrients I learned about on this site seem to help. Of course, could not function without Neurontin and Cymbalta and low-dose xanax throughout the day; heavier doses at night.

Thank you again ... best wishes!

If you have Chronic Inflammatory Demylinating Polyneuropathy, I believe they either have a trial at Northwestern or just treat it. You would need a confirmed diagnosis is my guess. I don't believe insurance would cover stem cell, or perhaps not without a battle, but if the study is still open - I think they were doing a study - that might help. It wouldn't harm to contact them. I did and they were helpful, but I didn't qualify, since I have idiopathic SFN for now. If I remember, they've successfully treated CIDP.

The natural approach, all I've used so far, does help. If nothing else, it puts your body under the best possible condition for healing or less harm. Diet, exercise, reduced stress and supplementation all help, so I'm not surprised to hear you say that.