Small fiber neuropathy

[Jaha]

I was officially dx'd with Small fiber neuropathy in Nov2015, after going thru many other guesses and tests. I have also had Wegener's Granulomatosis since 2010 and am having some testing for gastro problems right now. I have Weg's involvement in my lungs,sinses,brain and have had many different treatments such as MTX, CTX,Imuran, Cellcept, and 14 RTX infusions, plus all the daily predisone dosages up and down with the flares. I also take Batrium 3 times a week. The neurologist tried me on Gabapinten {failed that}, now I'm trying topimax and I can't remember the anti-depressant, I also had been taking for pain before this dx opiodes. I had the Emg at first and didn't get any findings, but they were seeing something in my brain on the MRI and from the senory test of the skin, so they did the punch skin biospies. It was very positive and my rhuemy was quite sure that I had FM all long. The neuro thinks that if I keep my Weg's under contol it will help my SFN, I really hope so, but the rhuemy doesn't think that it has a connection. Both my feet and hands are getting more and more effected and are hard to use, not to mention the pain. Please let me know if you have had experience with getting a good team to work together on this awful
complication.

[debra]

Jana, hi... It's Deb, I know we met in the past. Nice seeing you. Kinda feels odd saying that, as I'm sure we would rather be anywhere but? Jana, I feel bad that youre dealing with all this! I despise thissucky sickness, so much. Seeing good people suffer, just makes me so angry... I wish I could help here, but unfortunately I can't. I know the others will be along so... Just wanted to say, hello, and I feel for you, and understand how frustrating this must be. All the best Jana, and I will see you around.... Deb.

[debra]

Jana, hi. Deb again. Just wanted to add, as you may already know, be careful with topomax, as well because it can cause kidney issues, stones ect. Metabolic acidosis. I was put on this for my migraine headaches years ago, and no one had told me this, cause if they had, I would have avoided it. I'm sure most people read the leaflets that come with meds, but years back these didn't exist. At least not here. But hey, this is New Hampshire, its a whole different world up here! Live free or die, should be called, live free and die. Anyway, please make sure you drink enough water, ect. Also be careful in the heat! Topomax stops perspiration! This, I will refrain from getting into, as I need to at least try to get sleep! Its making me even more crazy! And I need, no help there... Good luck, Jana! Sorry, in advance for typos... Deb.

[Birdie]

Please let me know if you have had experience with getting a good team to work together on this awfulcomplication.

I had several good doctors who communicated well and cooperated on my treatment. I think I got lucky because they were brought to my case by the hospital when diagnosed. They didn't know each other but being members of the same hospital system allowed them to work well together, they had more than just me in common. They had the ability to view my records within the hospital's computers and could easily share my appointments in each doctor's office, communicate easily, ect.

I'm certain my care would have suffered without all that working for me. So, my suggestion is to do anything you can to improve communication between your doctors. Also, be vocal with them, stand up and make your concerns known.

[Alysia]

Hi. I am so sorry for the multiple conditions you are dealing with. I think that having a team of docs is the best way to handle things.
Your gastro issues can be wg related. I have wg in my colon. Can I ask what are the symptoms of wg in the brain ?
Keeping you in my prayers and sending my love ♡

[drz]

Doesn't a big Center like Cleveland Clinic have the resources to deal with all these issues and coordinate the care? I would think Mayo Clinic would be another good resource or maybe John Hopkins. If all the specialists are in the same clinic they should be able to coordinate care. Some places have a special person assigned to coordinate care for chronic illnesses. I just found out one of my local clinics (rather large one with branches in dozens of locations) assigned me a chronic illness coordinator and then I got a regular Family Medicine doctor at their place to help me plan and negotiate my care from several specialist doctors at different clinics. It is also easier now since most subscribe to same medical records company and can access records from other facilities without any necessary authorization or paperwork from me. I still request some specific sharing of my info to be sure it comes to their attention and then mention this to whatever doctor I am seeing at the time.

[Jaha]

I see all my specialists at CC, Rheumy, Neuro, Pulmy, Gastro and a Vascular Guy, so far only the Neuro and Vascular Guy are communicating. I have to tell them to ck this and that, from the others and it gets exhausting. It is funny because my Neuro and my Rheumy are best friend,(large facility, small community). When I was told about the SFN, she told my husband and I that it was not the kind that did not effect the motor nerves just the sensory nerves. We thought that was very good news of course. I had more time to study this type of neuropathy and it can also maybe cause some of my Gastro problems. She also explained that I had areas on my Brain MRI that showed vascular changes due to my Wegs disease process. She told me I needed to keep up with treatments for the Wegeners. I have a lot more headaches and dizziness, numbness in my head. I saw the NP for the Rheumy to setup a RTX infusions and talked to her about all this and she said she had never heard of RTX relieving the SNF pain. She also said that they had never had any patients with Wegs in their digestive system and this is CC. I'm confused and dismayed. I am waiting now for an approval that got screwed up 2wks ago to go thru for a treatment. Just Blowing off some steam!!!!

[Birdie]

Just Blowing off some steam!!!!

Another good place to do that is at the doctors offices.

I know... broken record... get bitchy... to whatever degree is required for you to get good health care. People get bitchy all the time in retail, buying something silly... but not health care?

In health care people seem to think they're at the mercy of the system. That idea has bologna in it's slacks. We're Animanie... totally insanie...

[debra]

Birdie, ya, SAY it!!! Good advice, as usual... Deb...

[drz]

Ask to see some one like a patient advocate and then ask for their help in getting some one to assist you in coordinating your care. You may need to get a general practitioner like I did for this purpose. Some times a nurse practitioner is best person for this role too since they often are open to some holistic treatments and the importance of diet in trying to stay well. My care coordinator knew that I expect them to help me manage my care and coordinate my treatment between the numerous specialists I see. Maybe there is also a chronic disease manager person too at CC that might assist you.

It is frustrating though when you know there is info available that is pertinent to your care and the doctor you are seeing can't access it in the system even when you have taken the effort to make sure it is sent to them. Or in the worst case scenario the doctor you are seeing doesn't think it is pertinent or even worth looking at.

[debra]

Drz, hi! Drz, great post, as usual. I agree with the nurse practitioner advice as well, and I may go this route myself. In fact my reason for even staying with this newer doc, was solely based on her amazing nurse Erin. She's gone now, so maybe I am as well... Drz, just read this article were a California hospital was fined 35 million, for charged medical tests and appointments never received... Booknut, and what shes dealing with, may be interested... All this, in of itself is a full time job! Crazy stuff to deal with, as if more is needed, right? Debra.

[debra]

Sorry, my people, meant 35 million, for state of California, hospitals. Not one hospital! It is me after all... Deb.

[Alysia]

I know couple of weggies with digestive involvement of wg. its not common but not impossible.

[Debbie C]

Hi Jana, sorry to here you are going through all this s*** ! You would think with all the docs up there they would be able to consult one another and get a good treatment plan for you. I really don't know anything about the conditions you have so I am sorry I can't be of much help. What is the fm you are talking about ? I wonder if all those rtx infusions if that can cause changes in your brain..you know that stuff has so many side effects. How do they know for sure its in your brain ? Have they tried lyrica for your neuropathy ? And do you think taking some probiotics might help with the gut issue ?? I don't know just guessing hoping something will help. I go up to CC on April 13th, if you are going to be there let me know. Hope they figure things out for you,I will say a prayer for you. HUGS !!

[debra]

Deb, hi. Great post. Alysia, my belief is nothing is off limits with this monster! Not dog, that bites, more like a monster... Stomach problems where some of my first symptoms, along with about twelve others all coming on at once... Jana, I believe there's a thread from a few years back of someone with extensive brain involvement. Not that youres is, I'm just pointing out that I remember reading it years back... I hope you get answers Jana, I also hope I get a couple, as its getting old... Debra.

[Jaha]

Deb C, I wish we could meet up some time in Cleveland or somewhere else up that way. We do have a lot in common, having to take care of our Moms and ourselves at the same time. I hope you are doing well.
Alysia, I know you have involvement with your intestines and that it is rare and that other also do. I thought that to be a really stupid remark she had made to me.
I really appreciate all the concern from everyone on here, it is so important to have such a immediate connection with our kind. I know that there is no one treatment or one answer for everybody. This disease is so unpredictable, but it just wears you down trying to keep your body from exploding into something that does major damage. I will continue to drag my husband and myself 4 1/2 hrs. one way, compile as many appts as I can get into the time we are there, stay in a cheap hotel for 2 days, sometimes 3, try to relay all the info back and forth between docs and then head home 4 1/2 hrs. Then I hope for good results from them and from me. I know its been a long road for many of us and I am hoping that we all have some break throws soon. Thanks for being here for me!!!!!

[Alysia]

A little note to Debra C.: I think that when its that viral infection in the brain, one will die in few days. I cope from medline:

Some people who received rituximab developed progressive multifocal leukoencephalopathy (PML; a rare infection of the brain that cannot be treated, prevented, or cured and that usually causes death or severe disability) during or after their treatment. If you experience any of the following symptoms, call your doctor immediately: new or sudden changes in thinking or confusion; difficulty talking or walking; loss of balance; loss of strength; new or sudden changes in vision, or any other unusual symptoms that develop suddenly.

[Debbie C]

Thanks for that info Alysia. I knew it could cause some brain issue but just wasn't sure of the symtoms. I have only had 1 infusion which the dr. said he wouldn't give me another since I was sick on the couch for a week. What do you mean you cope from medline ??? What is that ? Sorry for the hijack Jana :) Do you have any symtoms Alysia mentioned ?

[Pete]

Thanks for that info Alysia. I knew it could cause some brain issue but just wasn't sure of the symtoms. I have only had 1 infusion which the dr. said he wouldn't give me another since I was sick on the couch for a week. What do you mean you cope from medline ??? What is that ? Sorry for the hijack Jana :) Do you have any symtoms Alysia mentioned ?

I think she meant copy instead of cope.

[Alysia]

Yes. Typing error. Copy.
Sorry.

[Debbie C]

Scary Pete...she's "rubbing off on you " !!!! You now know what she means to say :)