View Full Version : Off to the Neurologist
I am off to CC tomorrow to see my neurologist about the SFN and the vasculitis in my Brain. I had a Rtx infusion on Dec 9th and have had a lot of weird things happen since then. My WBC, neutrophils and lymphs have all about doubled. I took a round of antibiotics because we thought I might have an infection and they are still quite high. I am also having a lot of pain and numbness in my head, face and ears. I also am having a lot of nerve pain in hands, feet and chest. My pulse is irregular and I have been very tired all the time. I don't know what is going on but I hope she will have some suggestions. This stuff really sucks!!
I am off to CC tomorrow to see my neurologist about the SFN and the vasculitis in my Brain. I had a Rtx infusion on Dec 9th and have had a lot of weird things happen since then. My WBC, neutrophils and lymphs have all about doubled. I took a round of antibiotics because we thought I might have an infection and they are still quite high. I am also having a lot of pain and numbness in my head, face and ears. I also am having a lot of nerve pain in hands, feet and chest. My pulse is irregular and I have been very tired all the time. I don't know what is going on but I hope she will have some suggestions. This stuff really sucks!!
Sorry to hear this :sad:and hope their consultation and evaluation provide some help for you so things improve soon.
renidrag
01-21-2017, 01:25 AM
Sorry about this, will be thinking of you today. Best to you.
Dale
Dirty Don
01-21-2017, 02:39 AM
Hang tough kiddo...it's worth fighting! Best to you.
blu4runner
01-21-2017, 02:45 AM
Best wishes will keep you in my prayers
Hope all goes well today and that the neuro can get things sorted out.
I'm back from the Neurologist and she had me get an EKG and some labs done. She is weining me off of cymbalta and starting me on another medication for the SFN pain. She has also ordered another MRI of the head, to see if I have more vascular changes happening or anything else. The labs that She ordered is going to check for possible CLL and also some things for my heart. She asked me if I thought that the rtx might not be working anymore. I told her that I really did not know, I just know that I feel like crap and that my #'s are all raising instead of going down. I will know more when my tests results come back, but for now I will just keep doing what I can and rest when I don't feel good.
Which neurologist did you see today?
I saw Dr. Jinny Tavee, She had dx'd me last year with both SFN and vascular involvement in the Brain. She is a great doctor and I feel real confident she will get to the bottom of this.
I saw Dr. Jinny Tavee, She had dx'd me last year with both SFN and vascular involvement in the Brain. She is a great doctor and I feel real confident she will get to the bottom of this.
That's great!! She and Dr Villa Forte work well together.
What is SFN? Hope you get some answers soon.
Rose
Mrs.M
01-22-2017, 03:53 AM
I am off to CC tomorrow to see my neurologist about the SFN and the vasculitis in my Brain. I had a Rtx infusion on Dec 9th and have had a lot of weird things happen since then. My WBC, neutrophils and lymphs have all about doubled. I took a round of antibiotics because we thought I might have an infection and they are still quite high. I am also having a lot of pain and numbness in my head, face and ears. I also am having a lot of nerve pain in hands, feet and chest. My pulse is irregular and I have been very tired all the time. I don't know what is going on but I hope she will have some suggestions. This stuff really sucks!!
Oh, dear. My thoughts are with you! I hope you find some relief and answers.
Sent from my SAMSUNG-SM-G935A using Tapatalk
Alysia
01-23-2017, 05:02 AM
I'm back from the Neurologist and she had me get an EKG and some labs done. She is weining me off of cymbalta and starting me on another medication for the SFN pain. She has also ordered another MRI of the head, to see if I have more vascular changes happening or anything else. The labs that She ordered is going to check for possible CLL and also some things for my heart. She asked me if I thought that the rtx might not be working anymore. I told her that I really did not know, I just know that I feel like crap and that my #'s are all raising instead of going down. I will know more when my tests results come back, but for now I will just keep doing what I can and rest when I don't feel good.
I only now read it. Sorry for your agony. What are SFN and CLL ? I hope you will soon feel better.
If you just got the rtx couple of days ago, it is too early to know if it helps. In the first month after I get it, I feel pains all over my body, like after a car accident.
Hang in there. Please update us. Sending prayers ♡♡
Rose,SFN stands for Small fiber neuropathy, they are the nerve fibers that lie just below the derma of the skin. They control sensation and autonomic factors. There are many reasons why a person can have them to start detorating. It is found only thru doing a punch biopsy on three place of your leg. There are only certain labs that can read them. Many times they mistake this for Fibromyalgia. They think mine is caused by the autoimmune disorder. There is no proven treatment for it, just control of pain. It can cause a lot of things to act up, including nerves to the heart.
Now I wanted to let everyone know that so of my texts have come back, my EKG is normal and the tropl.(can't spell it) in other words I haven't had a heart attack. The other tests are still quite out of whack and the Neurologist wants me to speak with Rheumatologist about further testing. I also have an appt with a Cardiologist so he can test me for POTS.
I am just taking it easy and thought I would update you all.
Thanks for listening.
That was my question, too, Rose. I found an interesting abstract about it....
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3086960/
How has your brain been affected? What pain meds are you on?
I am on cymbalta, oxycodone, and tylenol, but she is taking me off of cymbalta and will replace it with another antidepressant, after a 4 month wean. My Brain is showing some vascular changes, I will be having another MRI in Feb. Thanks for the article, it is packed full of info.
Middlesista
01-27-2017, 02:50 AM
Jaha - sorry to learn about your recent issues, seems with this disease of it is not one thing it is another. We just have to have to keep on keeping on, stay vigilant and in touch with our medical team. Be mindful of GI issues with the pain meds -
Well I came back last night from CC, after seeing the Cardiology NP. They ran a stress, echo on me and also did labs. It seems that I have Hypertrophic cardiomyopathy ( which is a thickening of the back of the heart muscle), caused by long term high blood pressure or can be hereity.
The tachycardia they are guessing is from the cymbalta, that I am getting weaned off of. I guess the Doctor is going to review this and contact me if anything different.
They were also able to do my MRI while I was there. I am holding my own there, in other words nothing has changed since the last time, woohoo!
They also ran labs and my WBC's are still elevated, a little higher than before taking the antibiotics for the UTI. So I am starting another course of antibiotics and then I will have another culture.
So there's the update and I am still working towards feeling a bit better soon!
Although I guess the progress you're showing seems maddeningly slow, it's still progress. Glad for the better report!
Jana,
Sorry to hear about all your are going through. I hope you find real answers with your cardio issues and feel better soon!
I feel your pain.
I am heading to CC at the beginning of March. Have an appointment with Villa-Forte on March 3rd.
Not sure what to expect but my local rheumy is not convincing me that she knows enough about Wegeners GPA.
Have a lot of nerve pain in my feet, hands and face. On Gabapentin and Tramadol but they don't really help that much.
Do you know of better meds than Gabapentin for nerve/vasculitis pain?
It's unbearable sometimes.
I am about to go through my 3rd Rituxin infusion. No improvements in symptoms yet. On 60mg of prednisone daily.
Also, since I have so much nerve issues, do you recommend I make an appointment with a neurologist too while I am at Cleveland Clinic or just stick with Villa-Forte for now?
It would be my first visit to CC.
My thoughts and prayers will be with you.
Jeannette
I guess, Jaha, that your message is king of good news or at least slow progress. What does that get? A half smile? :bored:
Jeannette, you and I are on some of the same drugs. The docs just up'ed my gabapentin to 1800mg/day. As for the Tramadol, I'm taking 300mg (sometimes 400mg/day). One or more of my drugs makes me bit dizzy and very tired. Even though I'm tired during the day, I often can't go to sleep at night and have to take ambien, which only "kind of" works.
My WG is extremely rare -- it attacked my pituitary which is a 1:10,000,000 occurrence. Recently, however, I have gone into the super rare thin air zone. WG is getting involved with my autonomic nerves and knocking out critical functions. So far, it has affected the phrenic nerve and the vegus nerve. Both are pretty bad and caused some serious issues. My PCP told me today that he is sending me to Mayo in Rochester. It will be interesting to see what they come up with.
I haven't been on the forum much lately. Usually, that means I'm not doing to well or I'm doing super, super well. In this case, I haven't been doing to well. Not sending messages on the forum doesn't mean I'm not looking. I check some admin things pretty much every day and then scan the messages to make sure everyone is being nice. Its and easy job because we have such good members. Good luck to everyone as we struggle with this disease.
Hi Jeanette, I'm glad to hear you're seeing Dr Villa Forte. I've been under her care for five years. She's wonderful. She also seems to be well-connected within the Clinic. I think I'd wait to see what she thinks about the neurological aspects. Unfortunately, her best friend Dr Tavvi, who is a neurologist, is leaving the Clinic soon.
In the meantime, you could call Dr Villa Forte's office to describe your symptoms. Giving her a heads up might accelerate another doctor's input.
Jeanette,
I am glad you are seeing one of the best, she is my Doc at CC. I am lossing my neurologist, Dr. Tavee, she is leaving on 2/14, so I will have to pick another one up there. If you are traveling from a long distance, I suggest you try to get in with a neurologist while you are up there. If you don't it may take a long time to get in since Tavee a is leaving and will leave them short a Doc. It is really hard to control nerve pain and I think every doc has a different approach, so maybe try to see what your new Docs say about the meds. I wish you all the best with getting the best treatments.
Hi Jana,
Yeap, sounds lie we are on the same drugs. A lot of the same symptoms with the nerve issues. How about prednisone? How much prednisone are you on? I know you are done with RTX infusions, right? How long did it take for the RTX do improve your symptoms?
Did your nerve issues ever really go away after RTX?
I take 600 mg of gabapentin about 3-4 times a day with 1 or 2 tramadols. It helps a little bit. Not a whole lot. Not sure if it's really the tramadol doing the trick or the gabapentin. I am also having heart rate issues and had an arrhythmia or extra heart beat incident the day after my 2nd RTX infusion that made me fall. I felt like 3 jolts (I think it was my heart either skipping or extra beat) which made me bit and cut my lower lip really bad then felt backwards on the floor. Went to the PCP and they did an EKG. My heart beat is getting affected by the high doses of prednisone. They put me on a beta blocker for now.
3rd RTX infusion is in 2 days.
Anyway, I really hope you get the new symptoms addressed soon. Sounds like you are in the hands of good doctors. I am glad you and Pete have good things to say about Villa-Forte. I was worried that she didn't have as impressive bio as some of the other specialists. I was going for Dr. Langford or Dr. Hajj-Ali but their appmt availability was further out and I want to see a specialist ASAP.
I will follow Pete's advice and call Dr. Villa-Forte's office on Monday and describe my symptoms and let me know I will be traveling from Georgia to see if they recommend I also make an evaluation with a neurologist.
Stay strong and positive! Don't drop off the forum. We'll help each other out!
Please know that you will be in my prayers and everyone else in this forum.
Jeannette
Thanks Pete! Great idea! I will follow your advice and call Villa-Forte's office on Monday. I will let them know that I will be traveling from Georgia and it would be nice if I need a neurological evaluation to have an appointment at the same time so I don't have to go back.
My neurologist here has told me I have to wait until the RTX treatment kicks in before we can address trying to "fix" nerve issues but makes me nervous that the damage is going to be irreversible if we don't do something.
Jeannette
Hi Jeannette,
I saw a neurologist at Cleveland last fall. I had a nerve conductivity study and electromyogram. I was experiencing tingling and numbness in my feet that had progressed about halfway up my shin. The tests showed that something was not quite right at my L-5 vertebra. I asked Dr Villa Forte if chiropractic might help. She said it probably wouldn't hurt.
I took the study report to my chiropractor. He took x-rays of the area and saw that I had some arthritis and bone spurs that impinge on my intervertebral foramen (the spaces between the vertebrae where the nerves emerge from the spine). He's given me 10 adjustments since mid-January. The improvement has been substantial. The tingling has retreated to the tips of my toes.
I hope you get good results soon!
Pete,
Thanks for sharing. So, my nerve issues are actually my worst symptom right now and it's getting very debilitating. I have major numbness, tingling, nerve pressure/pain like my feet are permanently asleep really really bad; feel like I am dragging two huge rocks. also like vascular pressure in my feet to the point that I cannot walk very well. This morning my right foot was dangling and I couldn't put weight on it. After I took my prednisone, it was a little better. has gradually gotten worse. Between December and now, the numbness has extended to part of my shins, like you and has progressed to my fingertips, and face now, around the right side of my face and around my eye. The face numbness comes and goes but the feet it's there all the time. My arms too but they hurt more than being numb. Vision blurriness on my right eye. Prednisone calms it a little bit but it's becoming less and less effective. I am trying to hold on to not increasing the prednisone (at 60mg/day) right now but I can already tell it's a matter of time. I won't be able to bear these symptoms much longer and, if the RTX treatment doesn't kick in, they will have to increase the prednisone. Especially, if it's irreversible. I am very scared and worried I won't be able to walk soon.
Back in January, local neurologist did an MRI of brain to check orbital area behind eye and head since I had a blood shot eyer. Didn't see any masses or anything at the time. She also did the nerve conductivity study and she said the parneal nerve was affected the most but not that bad. That was back when the numbness was just in my feet. She said to do a biopsy she would have to permanently damage the nerve in the area of the biopsy. She said it probably wasn't worth doing since they were pretty sure I had Wegeners. I actually don't have biopsy proof it's GPA.
I am curious if chiropractic care or something like acupuncture might give me some relief. I was actually seeing a chiropractor before the disease had gotten bad and numbness had just started to show up in my toes. only thing he said was my neck curvature was off -- too straight - so he was working on that.
have you tried acupuncture?
Jeannette
Hi Jeannette JMG
I have not tried acupuncture. I've seen chiropractors off and on since I was in my early 40s for muscle spasms, etc. I've had a history of disc issues. My spine is also a bit too straight.
I'm glad that you both are getting the opinions of specialists. It sometimes takes awhile to get things all figured out. The neuropathy I have is called Small Fiber Neuropathy and is found by 3 small punch biopsies on the leg and only certain labs read them. I had all the other nerve conduction tests and they were fine. I didn't get this until about three years ago, I have had Wegs for over 7 years now. I started having RTX in 2012 and have had 19 infusions, at present I am going back down on preds at 13mgs. I also have degeneration in my spine and neck which only adds to the pain. I tried gabapentin and could not tolerate how it made me feel. My neuropathy is in my hands and feet, burning, lightening bolts pain and feels like I have gloves on. I don't think the Rtx is helping my SFN, I'm not sure anything is right now.
I have only had possibly one short period of remission, but I am an oddity, a lot of complications.
I wish you both, all the best with your visits at CC, they will figure it out and you will feel better soon.
Thank you Jana. I really do hope you find some answers too soon.
So, your SFN has not been relieved by anything? How do you deal with it?
I was thinking I have SFN because it sure sounds similar to what I am feeling.
I have to research it online. The neurologist did the EMT study and said I had neuropathy but at the time it was done it wasn't that bad, nothing specific though. She said a biopsy would leave permanent damage on the nerve and we wouldnt really get anything from it since they didn't need it to prove it to say I have Wegeners.
Did you get permanent damage on those nerves they biopsied? If so, was it a lot of damage?
My neuropathy is really starting to disable me. Sunday morning my right foot was like a dangling noodle. I couldn't bear weight on it. Bumped up the prednisone to 80mg/day. Have to go see my rheumy tomorrow. 3rd RTX infusion was today and went well but nothing has changed. Only thing that improves my symptoms a little bit is increasing the prednisone. After increasing to 80mg, I got some more feeling back and can put a little bit of weight on it but very limited. I should really be using a walker.
Jeannette
I tried gabapentin and could not tolerate how it made me feel.
I'm totally with you on the gabapentin, Jaha. Since they up'ed me to 1800mg/day, I've been feeling terrible -- dizzy, light headed, and a little foggy. I still have good reactions and I'm thinking clearly, but feeling terrible. Today, I decided to go back to 1200mg/day and see if I feel any better, but with tolerable pain. If I feel better and still have a bit of pain, I'll up my tramadal and see if that helps. Another option is to go back to hydrocodone. I don't like to do that because, thanks to the druggies, the gov't made it very difficult to get even if prescribed. So, I hope the tramadol works.
I'm a little leary about changing my dose of gabapentin, because I've been feeling pretty decent for the past 3 days. I started the higher dose of gaba about 2 weeks ago, so that would be about right. We'll see what happens.
Debbie C
02-15-2017, 01:44 AM
My mother was on gabapentin, I don't know the dosage , but the kidney dr. thought it might help her with essential tremors as well as her blood pressure but she also couldn't take it. She has a fentanyl patch (75mcgs) that I change every 3 days and also on hydrocodone. But she is in soooo much pain with 4 bad back surgeries and torn rotator cuffs in both shoulders and arthritis that the dr said was beyond horrible. Nothing helps her, that's also why I thought I would try that gmd and see if that helps.
Vdub, I hope you can figure out some combo that helps you out. Have you ever tried the fentanyl patch ? I don't know if you can use it with the other things you take because it is potent. There is a epidemic of heroin addicts mixing the 2 and so many are dying from it.
There is a epidemic of heroin addicts mixing the 2 and so many are dying from it.
Somewhere in my snooping around the internet, I came a cross a reference that said the US gov't hadn't put strict controls on Tramadol yet because it has a unique property. Apparently, if you crush it to smoke or crush it to mix with water and inject, the side effect is "you die". That probably keeps most of the junkies away from it.
Susan55
10-12-2017, 01:29 AM
I am off to CC tomorrow to see my neurologist about the SFN and the vasculitis in my Brain. I had a Rtx infusion on Dec 9th and have had a lot of weird things happen since then. My WBC, neutrophils and lymphs have all about doubled. I took a round of antibiotics because we thought I might have an infection and they are still quite high. I am also having a lot of pain and numbness in my head, face and ears. I also am having a lot of nerve pain in hands, feet and chest. My pulse is irregular and I have been very tired all the time. I don't know what is going on but I hope she will have some suggestions. This stuff really sucks!!
Hi Jaha
I am reading this post OMG I have someone who actually had/has what I am experiencing for 3 yrs now. I get pain so bad in my head, it quick sharp pains that just shoot all over my head, get dizzy, loose vision for a short period of time and my head goes numb. IT can go away just as fast as it comes on. It's so strange. They have done an MRI about 4 months ago and no dr has told me the outcome of the test, so I am thinking it's all good. Then I have chest pain, but they can find nothing wrong with EKG.
My hands and feet go numb all the time, hard to walk some days. Last June/16 when I was told I had GBS, they said all these symptoms were GBS. I had nerve test done and it showed I have nerve damage through out my body and weakness from it. I used a walker for 4 months then went for physio which helped a bit, but now it's all back and now I am told I never had GBS in June of last year, that it was GPA the whole time.
I had a doctor tell me three years ago (when all other symptoms started and dr's said it was all in my head) he believes I have CLL. I was going for monthly blood test. Then had to change doctors and the new dr looked at my card to take to the lab for testing for CLL and he tore it up saying "oh that's crazy" you don't have it.
I've been through so much (as all of you on here has been also) just so frustrating when you have so many symptoms and they tell us were crazy. BUT, it's all adding up now for me.
For years I have had colonoscopy and endoscopy done. Pulps taken out but not cancer, so they said it was nothing. I get acid reflex so bad , stomach swells up and the pain is unbearable ! Lately the stomach pain is so bad I refuse to eat, eating makes it worse. doesn't matter what I eat it swells. I have tried so many medications and diets for Irritable bowel over the years and nothing works.
But after reading this post and what you have been through and your symptoms, I don't feel alone anymore.
I will be bring in all paper work of all the test of bowl and endoscopy to the rheumy in two weeks. They gave me pic's of what they removed so I will show her.
So glad I came across this post, I don't feel like it's all in my head now.
How are you doing now with all this ?
Susan,
I am sorry that you are not being taken seriously about your health concerns. I have had that problem with some on the Docs I have seen at CC. I am seeing a new neurologist and gastroenterologist in Dec, at Ohio State, where my oncologist is. I will still see my Rheumy at CC, I have an infusion on Friday the 13th. I still have a very good cardiologist at CC and need to have more testing done, because BP keeps bottoming out and then going really high. I also need to get back to my pulmonologist, but that is going to have to wait for now. I have to many complications right now to keep it all straight.
I haven't had an infusion for 10 months, because of the issues with the stomach and the neuroendocrine tumor they found in my colon. I am only on 10mgs preds and I'm having lots of pain everywhere. I am hoping that the RTX infusion will calm all of it down. I really want off of these trouble preds.
I'm wishing you all the best with your upcoming appt. I am learning to try to take one symptom at a time to work on. I really think sometimes we overwhelm the docs!
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