Small fiber neuropathy

[Jaha]

I am wondering if anyone has been dx'd with Small fiber neuopathy. I am wondering what they do to treat it? I have had 2 EMG's with no evidence of neuropathy thru those tests. I have a lot of muscle weakness, pain, burning, and numbness in my extremities. I also have weird headaches with numbness. When they did an MRI my brain they could not determine where what they saw was Demyelinating Disease or chronic microvascular ischemic changes. I would be grateful for any info you can share on this matter.

[drz]

I am wondering if anyone has been dx'd with Small fiber neuopathy. I am wondering what they do to treat it? I have had 2 EMG's with no evidence of neuropathy thru those tests. I have a lot of muscle weakness, pain, burning, and numbness in my extremities. I also have weird headaches with numbness. When they did an MRI my brain they could not determine where what they saw was Demyelinating Disease or chronic microvascular ischemic changes. I would be grateful for any info you can share on this matter.

On my tests for degree of neuropathy they only distinguished between damage to motor nerves and damage to sensory nerves.

MS would be a Demyelinating disease as the insulation on the nerves gets destroyed. Microvascular ischemic changes would be in the brain and refer to blockage in vessels causing damage and symptoms. What do they propose to help sort out what is going on?

I think that is the kind of question I would take to Mayo Clinic to sort out. In their last fund raiser letter they advertise "When you 're facing a complicated diagnosis and have questions about your treatment and your future, Mayo will be there, exploring all options and arming you with every piece of information you need."

I know several people who are still alive after help from Mayo. I believe it was their consultation that permitted me to survive my initial treatment.

[Birdie]

I have a lot of muscle weakness, pain, burning, and numbness in my extremities.

Jaha,

I can't speak to the rest of your comments but when it comes to weakness, pain and burning in muscles... I suspect I'm the all time expert on having it.

In my case, until last march it was more like all preddies describe. Then I was given prednisolone. That put me over the edge. I'm certain prednisone has caused nearly all of my symptoms since day one but prednisolone amplified them twenty times, and it's stayed that way ever since. About ten days ago I reduced from 5 to 4 mg. Seems hard to believe but I'm seeing some minor signs of maybe slight possible improvement perhaps a bit (how's that for hopeful thinking).

Prednisone absolutely damages muscle. I am betting that a reduction in pred will equal improvement in muscle condition. Ask me in about two months when I've been at 3 mg for a few weeks.

[Debbie C]

Jana,I am sorry to hear you are not feeling well. What do they plan to do with the mri.....just wait and see !!!????

I can't answer about the neuropathy, it could be the pred,like birdie said, doesn't CC have any answers ? I know my body is soooo sore from doing leaves for the past couple weeks that I can barely move Take care and keep us posted. I would call CC and tell them what is happening

[Jaha]

I go back to the neurologist on Nov 17th to see what the results or the plans are. I just wondered if anyone had experience with this and what they did for them. I am down to 7.5mgs. of Preds now and only doing RTX every 6mos. Thanks drz for your recommendation of Mayo and explanations on two possible dx'es. I have the head of neurology at CC checking me out, I just want an answer yesterday. Thanks everyone for your comments. I realize it is a guessing game sometimes and it all just really sucks.

[drz]

I go back to the neurologist on Nov 17th to see what the results or the plans are. I just wondered if anyone had experience with this and what they did for them. I am down to 7.5mgs. of Preds now and only doing RTX every 6mos. Thanks drz for your recommendation of Mayo and explanations on two possible dx'es. I have the head of neurology at CC checking me out, I just want an answer yesterday. Thanks everyone for your comments. I realize it is a guessing game sometimes and it all just really sucks.

Another interesting quote from Michael Camilleri, MD at Mayo Clinic:

"If you have exhausted all forms of treatment and need one more place to turn, Mayo will be there, working tirelessly to provide everything in our power to safeguard your health."

In my experiences at Mayo and others I know of, this is sometimes true, but not always. I think it depends a lot on the doctors you get and maybe varies by department too. I had to go elsewhere to get my BAHA done but I think the care in most departments is usually excellent.

[Debbie C]

Jana,why do you have to wait so long.I know now its only a couple of weeks away but they should be able to tell you SOMETHING over the phone. I hope they find out the problem soon for you.....Take care and keep us posted.

[Jaha]

Well I received a message from the Neurologist yesterday, that I do have small fiber neuropathy. I see her next Tuesday in Cleveland and she will give me the ins and outs about this dx. I am a little down about it and have been trying to read and understand the difference in this and other types of neuropathies. I guess the treatments are about the same, but I will find that out at my visit.

[Pete]

Just remember, there are no stupid questions. Make sure you ask them all and get understandable answers. Safe travels!!

[Birdie]

Well I received a message from the Neurologist yesterday, that I do have small fiber neuropathy

First step in the right direction.
Sucks to have something, but it sucks more having it and not knowing.
Kinda hard to treat what you don't know you have.

[Jaha]

Just a follow up from my appts. at CC on the 17th. The first up was my Neurologist, concerning the small fiber neuropathy and Brain MRI. She says that even though I do have SFN, it is being controlled well with the Rtx I have every 6 mos. The only other thing is the pain management for it, so she is going to try me out on Topamax, which will hopefully get me off some of the Opioids that I'm on now. This kind of neuropathy is sensory so that is good, because I won't lose control of motor nerves, which could cause major problems down the road.
The MRI of my brain shows that I have some vascular changes all due to Wegener's and is also being controlled by the RTX. She did say that if not for those areas, I have the brain of a 30 year old!! That was amazing after what it's been thru, ha ha!

The second up, the Vascular doc, says that so far my blood flow in my limbs were great. I do have some plaque in my carotid artery and aorta, but not enough to do anything about it. So both appts went better then expected.

Of course there had to be some bad with the good,so while we stayed in the hotel, I got some sort of stomach flu bug. That room had to be toxic when we left there. I am just now able to eat again and really glad to be home.:thumbsup:

[Pete]

Great news!! Except for the flu bug...

[Debbie C]

Well that is good and bad...good now that you know what the problems are and bad because you have them.At least the wondering is over,thats the worst thing. Are you having any side effects from the Topamax ? So as far as your brain,does that mean that wg has hit there ? When is your next rtx infusion ? So she said you had a brain of a 30 year old, god I'd hate to find out how old mine would show. Hope the meds work good for you ,Jana.Keep us posted