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Old 09-17-2007, 06:01 AM   #1
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trinky HB User
PHN without shingles rash

I have excruciatingly painful electric-shock pains in my left side. I've been diagnosed with Post-herpetic Neuralgia, but now my neuro is questioning that and sending me to a peripheral nerve disorder doctor. I have never had a visible outbreak of shingles in my life. I wrote a post on 9-9-07 (access it by searching "lightning strikes"), many people have read it but no one has related and responded. I am so discouraged and feel so alone. Even my neuro says he has no other patients who present like this. I am on a steroid, Neurontin, and Valtrex. I'm in my sixth week this time, and although better than my third week (intolerable strikes of pain) the zaps are still with me and I remain as motionless as possible to avoid triggering them. I'm 65. This has come and gone for eight years and the sieges are getting closer together. I'm desperate. Does anyone else have PHN without rash? Electric-shock pains in your ribs? Please let me know if you have any insight? Thanks so much. Trinky

 
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Old 09-17-2007, 08:13 AM   #2
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Re: PHN without shingles rash

just wondering if you have ever had an MRI done on your thorasic or c spine areas(depending on just where those zaps are at in correlation to the dermatome they go to)?sometimes those types of zaps can actually be stemming from a spinal issue that is affecting the nerve in that particular dermatome.since you have never actually had the little shingle blisters appear,this would be another possibility worth checking out.just a thought for ya.marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
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Old 09-18-2007, 02:21 AM   #3
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Re: PHN without shingles rash

Thanks for responding, Marcia. I had an MRI eight years ago with my first round of these lightning strikes. Had another two years ago with recurrence. I don't know the specific area of spine checked but it must have been thorough because it took several hours to do. Those MRIs didn't reveal anything to lead away from the PRN diagnosis, I guess. Now that it appears that this is going to be a more chronic condition I am more tuned in and invested in my treatment, especially since a clear diagnosis is difficult to get. I've always been pretty healthy and was naive going into this. I'll be more involved from now on, to be sure, and better prepared for my 9-27 consult with the new neurologist.
Your surgical history is pretty daunting, Marcia. You have my best wishes and thanks for writing. Trinky

 
Old 09-18-2007, 03:50 AM   #4
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Re: PHN without shingles rash

Trinky, Did they also do an mri of your brain? I don't know if you have any other symptoms but electric shock like symptoms are also symptom of ms.
I have post herpetic neuralgia also but had a very obvious shingles rash however, I have a great aunt who also had shingles and never noticed the rash. It was there (the doctor saw it) but she never noticed it. from what I understand some people are very bothered by the rash itself but others not and if it's in a spot where you wouldn't normaly see like on your back,it's possible you had it but just didn't notice? I have also heard of internal shingles but have no idea how they figure that one out. I am sorry for your pain,I do know how bad it can be. I hope you find some help soon.

Last edited by kdel; 09-18-2007 at 05:37 AM. Reason: interrupted

 
Old 09-18-2007, 07:11 AM   #5
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Re: PHN without shingles rash

No, I've not had a brain MRI and have not considered MS. Other than the painful lightning strikes and numbness in the left arm and hand when the strikes are at their worst, I don't have other symptoms. Of course, I am fatigued but attribute that to the physical and mental effects of the pain. I appreciate your raising these other possibilities, however, and will mention them during my 9-27 neuro consult. Thanks for your response and best wishes to you. Trinky

 
Old 09-18-2007, 08:12 AM   #6
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Re: PHN without shingles rash

just a suggestion for you hon.do you actually have the MRI reports done in your possession?if not,get them and read thru them for yourself.unfortunetly,depending on the doc you see,and "their' overall knowledge of certain types of spinal issues and other things,they can and do blow off certain findings as not important only becasue they simply do not know or understand the overall significance of a particular finding.there could be something there that you were not informed of.believe me,this happened to me with my little cavernoma inside my actual cord.two previous NSs basically told me this was not 'big deal' but when i got to the university of MN and consulted with the head of neurosurgery who had dealt with these little SOBs ALOT in the past,i found out a whole entirely different story.i also found out something that my other two NSs never mentioned to me,that this little glob of blood vessels i had in there had actually bled,twice.i was at least a bit shocked?i also found out it was now considered to be an "active' bleeder and needed to come out or the next bleed would have closed of the remaining cord space and paralyzed me.this little 'no big deal" thing defintiely WAS a very big deal but my other two NSs just didn't know enough about them to actually know that.go figure.this is why every person who obtains any tests really does need to obtain their very own copies and do a bit of research on your own.just try and track down copies of those MRIs and possibly obtain a brand new one for comparrison.even within six months between MRIs,sometimes big changes can occur.this is why any neuro will want you to have an MRI that is no more than six months old when they actually do a consult on you.alot can change in the old spine in a pretty short period of time.you can probably obtain copies of the MRIs either from the place that did them or thru your primary if he ordered the test,he would have copies then.you just seriously really need to know what was actually found and is in that report.good luck,Marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 09-21-2007, 05:52 AM   #7
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Re: PHN without shingles rash

Thanks for the information, insight, and advice, Marcia. No, I don't have copies of my MRIs, but can probably access the more recent one which is two years old. As I said previously, I am now taking a more active role in researching my case, especially since the bouts are getting closer together and lasting longer. I'm in my sixth week of this one. I am discouraged that my post didn't find others with my exact symptoms. My lightning-strike pains seem to be similar to those suffered by trigeminal neuralgia patients, but mine are always in the ribs of my left side, with numbness in the left arm, not in the face or head. Best wishes, Trinky

 
Old 09-21-2007, 07:03 AM   #8
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Re: PHN without shingles rash

yep,you definitely need to see whats in that report and any others if you can get them.it would be worth your time and effort.you just really have no clue what really was in them til you read thru them for yourself.let me know what pops up in that summary at the very end of the report.espescially any 'incidental" findings that may be in there.you just really don't know what is or is not a real finding when it is based upon one docs isolated opinion.or what 'he' decides to tell you.Marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
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