Discussion in 'Fibromyalgia Main Forum' started by foxglove9922, Feb 17, 2006.
Anyone besides me lucky enough to get all 3 at once?
So sorry. I do get facial numbness that resembles Bells but is not and some docs do think our nerve pain could be shingles don't they. Interesting. How are you doing?
Hugz Anne C
Bells Palsy is of course on my face....just woke up 2 days ago and the whole side of my right face was drooping and I had a headache/earache so piercing I didn't think anything that horrible existed.
2 weeks ago I got shingles for the 11th time in 5 years (since the beginning of CFS) on my left lower back which is the same spot they occur everytime.
Doctor put me on Famvir for the shingels for a week and now Valtrex for the Palsy, suspects herpes viruses are just having a shin-dig in my body.
I'm having the worst herx I've ever experienced in my life since CFS and I've tried just about everything out there and have had many, many herxes but this one takes the cake. I highly suspect the Valtrex, even though very similiar to Famvir must be killing something the Famvir missed as my daughter and neighbor/care giver have mentioned that a horrible smell is coming out of my body. Palsy is making it difficult for me to smell.
Phone call from doctor's office yesterday said CT scan revealed I have had a mild stroke,,,,whether a recent one causing the facial droop or an old one that I may not have even noticed will be determined via MRI Monday............ahhhhh.....hoping for a better day.
I am so sorry for all you are going through. I pray things get better fast.
I had an onset of Bells Palsy after using HGH for several months. My then doctor (Cheney) said I became "viral" and the virus crossed into the brain and damaged my facial nerve.
Human growth hormone made me feel better but unfortunately it makes everything grow including viruses. Had I been better advised of the symptoms to watch out for or had known of the possibility of Bells Palsy and permenant paralysis, I would have been more careful and have stopped the HGH.
I also, as you have, had a terrible time with the drugs given to me immediately after my onset. I don't know if it was the antiviral or the steriod or the combination of both that caused my awful symptoms.
Were you given an oral steroid to reduce the inflamation around the facial nerve? I did not get the drugs as soon as I would have liked. There is speculation that the sooner you get the steroids the better chance you have of recovering full movement.
Since I have been down this confusing road and have tried different treatments, I would suggest that you give yourself time to allow the virus to run it's course and for you to heal properly. I tried acupuncture with the additional stimulation only later to read it was best to allow your body to try to heal on it's own and that doing what I did had a higher rate of synkinesis, which is what I now have. Synkinesis is where the nerves make new connections, but incorrectly. Muscles pull that should not pull etc...
If what you have is an onset of Bells Palsy, then you know that you have a very good chance of the paralysis resolving itself in a matter of weeks, or sometimes months.
I hope that your doctors are able to sort out if this was virus related or stroke related. Take care of yourself and rest to allow your body to heal.
Wishing you all the best!
Many thanks to all that responded.
I am on HGH injections for the last 2 years and was unaware that they can lead to palsy. Are you sure of that Jeanne?
thanks a bunch.......foxglove
That when radiologist reads Scan they will often say that foci could be due to TIAs(mild stroke) migraines, MS and other stuff to cover themselves.
A doctor once to me I had had strokes, when in fact he just was reading off the report. The neuros dismissed this as stupidity on the doctor's part, as it also is known that this is rarely the case unless they are in certain locations, size and patterns. So don't scare yourself just yet. The doctor just read the report wrongly, took "can suggest" as given. No strokes were had by moi!!!
The Bells Palsy should go away in a couple of weeks. Did you get the actual slanted eye and mouth and drooling a bit? I ask, as doc thought I had Bells when in fact I was just numbed from a berve trapped in the neck.
I am so sorry re the shingles. These can recur over and over and be very painful. This happened to my mom. I hear that Neurontin works on it. Good Luck Monday, the MRI will be better to see the foci.
Love Anne C
[This Message was Edited on 02/19/2006]
According to Dr. Cheney growth hormone makes everything grow, the good and the bad. The bad would include viruses, cancers etc... He suggests having a specific blood test done to screen for cancers prior to starting a protocol of HGH. This information can be found in his protocols that are on line.
Using the HGH does make viruses grow, or replicate. I responded well to the HGH but became quite ill with the all together familiar CFIDS symptoms after being on the HGH for several months. At that time Dr. Cheney indicated that he thought I was "viral" but we decided to wait it out a few weeks. I had small herpe blisters appear in my ear days later and then I had the full onset of the paralysis. I was instructed to stop the growth hormone immediately and indefinately. When Dr. Cheney did a RNasL test, my score was through the roof indicating I was indeed, "viral". He said that my immune system was too beleaguered to handle and keep the viruses in check. After at time, once my RNasL was in a more normal range and I was on an immune modulator we introduced the HGH back in but I felt sick again, indicating I was becoming more viral and I stopped it and have not tried it again.
Since you also had an outbreak of shingles which is known to be virus related, it seems likely that the facial paralysis could be too.
A point of interest; the EN & T doctor (and also a Bells Palsy specialist) that treated me said that Bells Palsy is only "Bells Palsy" when you don't know what caused the facial paralysis. When you know that it is from a virus it's called Ramsey Hunt.
Hope this information is helpful. Good luck and recover quickly.
Many thanks Anne and Jeanne for the well wishes and all the information.
I am fairly certain the Bells Palsy diagnosis is correct as I have the classic droop on one side of my face including eye and mouth with drooling. Have had to tape my eye shut at night as it won't close by itself and the dryness is quite irritating.
I just started looking into the Ramsy Hunt diagnosis as my improvement on Valtrex has be quite remarkable considering only 6 days ago hardly anyone could understand what I was saying and I am able to converse on the phone as of today. In addition, my eye is finally closing enough at night so that it doesn't need to be taped and I can sleep.
Thanks a bunch for everything.........foxglove
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