Hi, just left the Dr. and my diagnosis has changed from non systemic vascultic neuropathy to small fibre neuropathy caused by diabetes as my HBA1C is high at 0.064 (range is .040-.060)? I had just accepted the NSVN with the IVIG treatments. Those treatments are now cancelled, the prednisone is cancelled. He released me to my family Dr. to get my sugars under control & then the pain may or may not be reduced. The muscle in my toes have stopped working. He did not have much to say about my toes & the first diagnosis. I feel very lost. Not sure where to go from here. Maybe another Neurologist or just leave it as it is? I only went to see him because the cramping & spasms have increased in my feet & I can't seem to get control of them. I forgot all my questions when he threw this at me. June
The following user gives a hug of support to June89: tingles (06-08-2012)
Hello June, sorry to hear about your diagnosis but dont get down yet. If you do get your sugars under control you may see an improvement in your pain. I am confused on your A1C numbers however, the normal range on my blood work is always been between 4.8 -5.6. Maybe someone on this board could clear this up but if not you might have to ask your neuro doc to explain. Good luck with everything June and hang in there.
The Following User Says Thank You to captinsane1 For This Useful Post: June89 (06-07-2012)
I am sorry to hear about this drastic change. I would have a talk with your family doctor. Even though he changed your diagnosis to SFN a neurologist still treats SFN. Diabetes or not you still have SFN and need treatment for the pain that it creates. Sounds to me like you have good grounds to request a second opinion.
Please keep us apprised.
The Following User Says Thank You to tingles For This Useful Post: June89 (06-08-2012)
Hi captinsane1 & tingles, thanks for thoughts & honest opinions. I have made an appointment with my family Dr. I am going to tell him everything. This specialist that I had all of my faith in, was very abrubt & talked to me like I am stupid. He threw his notes on the table that went everywhere. He did not know anything in all the reports etc he has of me. He said where is your biopsy report (like I carry it around in my pocket)!! He said lets start at the beginning , then he shifted to my meds, he did not even know what he put me on. He then just threw it out there " Do you know u are diabetic"? "no of course u don't , what are your sugars like?" oh u haven't taken them" Why would u" but they are not really very high, just a little bit" Even his nurse couldn't believe the change. So I have decided to get my family Dr. to refer me to a new Neurologist in London Ontario at London Health Sciences. i am going to start over. I have put 20 pounds on since I started prednisone in April, so maybe this is why my sugars are high. I do not know what he saw on my labs that made him say that. My sugars are usually around 7.5. I am going to keep positive and keep on seeking out a Dr. that I can trust with my health.
Thanks again, June
Last edited by June89; 06-08-2012 at 09:08 PM.
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I wrote a letter to this Dr. telling him exactly how I felt after this appointment. I was not rude but to the point. He replied to my surprise, to please come back for an appointment to go over everything. I went yesterday & he apologized for his behaviour & shook my hand. He then said to lets start over. The IVIG treatments with the prednisone would have after the 3 treatments made a difference, so in that case the IVIG treatment is on hold. My sugars that I showed him that I took each morning was between 4.6 to7 which is good. He said that I may be very sugar sensitive that I may have prediabetic neuropathy. On top of that I do have small fibre neuropathy with no cause.
My B1,B6 & B12 have all been low so I have taken supplements to improve them, so i had blood work done yesterday to see if they are within the levels . I have dry eyes & mouth so I am having 2 tests done a lip biopsy and something else (forgot the name) where dye is sent up my veins(?) in my mouth. This is to test for Sjorgens Syndrome (not sure what that is yet). He explained that neuropathies can cross over each other and then it gets difficult to diagnose. I feel comfortable now with what the Dr. said so I am going to stop searching for information or at least slow down. I think that I am having difficulty as everyone does accepting what you have, as the pain is so hard to live with. Thanks for your concern tingles. Here is to being happy & not so serious. June
The Following User Says Thank You to June89 For This Useful Post: tingles (06-21-2012)
Wow, I can't believe the change in your doctor. But I am happy that he apologized and explained about the results. It is hard to start all over with a new doctor!
I have had SFN for 8 years now and it is a struggle everyday. The best thing I have found is massage therapy and water exercise. I find can't take narcotics, but I do take a small dose of Ativan at night for sleep as night is my very worst time. My toes don't move either and feel like they have been crushed!! I have terrible leg pain, and the bane of my existence is restless leg syndrome. The Ativan helps a little with that as well.
I hope you get to the bottom of your sugars. A 2hr blood sugar sometimes uncovers more abnormalities than a fasting one.
It really is a balance between not doing enough and over doing! I hope you find something that helps you, don't give up hope!
Best wishes to you!!
The Following User Says Thank You to daisymaegrl For This Useful Post: June89 (06-24-2012)
I went to my family DR. and he was very surprised that the Specialist DR. ordered a glucose tolerance test. I have been on prednisone for weeks and being on this drug can bring your blood sugars up. So My family Dr. & I both agreed to get the test done, but he says I am not diabetic or prediabetic. The Specialist also said that the Canadian goverment just released guidelines as who can have the IVIG treatments and I fall into the cracks....? The Specialist must be trying to get people off by changing there diagnosi!!
I have dry eyes & mouth & the dentist said my gums are dry too So I am having a lip biopsy, now sheduled for September. I am having another tests done too (?NAME) where they inject dye into my saliva gland. Thats in 1 week. Checking for Sjorgens. Can this cause neuropathy? I do not know much about this.
My back hurt mildly over the last 2/3 years (since the car acident dec 8 09) I had whiplash Grade 3. For the last 2 weeks its wearing me down.The Dr.said that the prednisone helped cover the pain. I have weened myself down to 1 week with 1 pill.
He has put me on celebrex for antiiflammatory as my MRI showed bulging discs & 1 nerve being pinched.
I do go for a massage ix a month and that really helps. She is not allowed near my feet. They continue to burn with pain & spasms all the time. It feels like my feet are boots on really tight, wierd.. Going to bed now. thanks for listeneing to me. June
Last edited by June89; 06-30-2012 at 12:37 AM.
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