The MS Specialist I recently had a followup with after another brain MRI in a 3T machine says my "numerous" lesions are not consistent with MS. She said there were no new lesions from my last MRI that was done six months ago. She said my lesions are also not typical for MS since they are found in the subcortical region.
I said ok then what is causing my bilateral calf pain that is most pronounced when I wear shorts and no socks. It is the strangest sensation that is almost like a cold prickly sensation that makes it hard for me to concentrate. She said this is small fiber neuropathy. This threw me for a complete loop since I am somewhat familiar with SFN. I then said shouldn't we get a biopsy to confirm this. She said the biopsies are not that reliable and it would not change her diagnosis and treatment. Her treatment was to only increase the amount of neurontin I am on.
Should I accept this diagnosis? All my bloodwork is normal, spinal tap normal, MRI thoracic spine normal. I did ask for an mri of my cervical spine, which I had last Friday and I am still waiting for those results.
Thank you.
MS Specialist says I do not have MS, but rather SFN.
Re: MS Specialist says I do not have MS, but rather SFN.
Hi,
Well, you have something that is different to MS and really we shouldn't view it the same way. This note had some explanations of SFN - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3086960/ but I am always concerned about using antidepressants to control pain.
I would try a lot of physical manipulation with massage and dry needling and look at a muscle relaxant (if you are actually stiff) like Dantrium.
Before any medication I would ask for a full profile of vitamin deficiencies and a fasting amino acid test. If you profile those you may turn up something. Then I would check for any infection, bowel or blood, that your doctor can think of. It would be a case of elimination of anything that could contribute to inflammation.
Diet wise, I would try to eliminate the best know sources of inflammation; gluten dairy and pulses and anything you know you are allergic to.
I would also undertake regular exercise like Plates or Yoga as you need to keep using those little muscles and not just forget about them.
You are in a different place than someone with MS although symptoms may overlap. Treat each symptom as its own little problem rather than use one generic name for the lot.
Regards,
Well, you have something that is different to MS and really we shouldn't view it the same way. This note had some explanations of SFN - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3086960/ but I am always concerned about using antidepressants to control pain.
I would try a lot of physical manipulation with massage and dry needling and look at a muscle relaxant (if you are actually stiff) like Dantrium.
Before any medication I would ask for a full profile of vitamin deficiencies and a fasting amino acid test. If you profile those you may turn up something. Then I would check for any infection, bowel or blood, that your doctor can think of. It would be a case of elimination of anything that could contribute to inflammation.
Diet wise, I would try to eliminate the best know sources of inflammation; gluten dairy and pulses and anything you know you are allergic to.
I would also undertake regular exercise like Plates or Yoga as you need to keep using those little muscles and not just forget about them.
You are in a different place than someone with MS although symptoms may overlap. Treat each symptom as its own little problem rather than use one generic name for the lot.
Regards,
Re: MS Specialist says I do not have MS, but rather SFN.
Thank you for your reply. I do believe this is from an infection. I was in a relationship with someone that disclosed to me they had herpes. I had no idea one could contract the virus when the carrier showed no symptoms. While I have never had a traditional outbreak and now have chronic red bumps on my buttock region. I only test positive for hsv1 through Western Blot. I am assuming I contracted hsv1 genitally and this is causing my body to go rogue.
I have been seeing a naturopath for some time now. This md has run all sorts of blood tests and allergy tests. Because of this I have cut out almost all dairy, eggs etc.
After this diagnosis of SFN my naturopath recommended I see one of her infectious disease docs to possibly help me sort this out.
I will take your advice and seek regular massage and try to stay active. Unfortunately the more active I am the more pain I experience. My acupunturist says this is because my nerves have been damaged / aggravated. She recommends just doing pool activity for a year to see if things calm down.
I still find this hard to believe that the lesions on my brain aren't causing this, but the infection angle does make sense. If I could only wind back time.
I have been seeing a naturopath for some time now. This md has run all sorts of blood tests and allergy tests. Because of this I have cut out almost all dairy, eggs etc.
After this diagnosis of SFN my naturopath recommended I see one of her infectious disease docs to possibly help me sort this out.
I will take your advice and seek regular massage and try to stay active. Unfortunately the more active I am the more pain I experience. My acupunturist says this is because my nerves have been damaged / aggravated. She recommends just doing pool activity for a year to see if things calm down.
I still find this hard to believe that the lesions on my brain aren't causing this, but the infection angle does make sense. If I could only wind back time.
Re: MS Specialist says I do not have MS, but rather SFN.
Hi,
You can control herpes with Valacyclovir. The normal approach is a short high dose. For my MS I use a long term low dose of 2x500 mg a day. My form of herpes is EBV.
There are various foods and herbs that have antiviral properties so maybe you could increase the amount you take through diet. Valacyclovir will be the best route. The advice about nerve damage is borderline right. Some herpes such as zoster will cause shingles which is blistering of the nerve endings. I don't think pool activity will make any difference to that sort of damage at all.
Try Valacyclovir. Some people seem to have a reaction to it but I don't know why. They are more likely herximer responses. It just made me feel better quite rapidly.
Regards,
You can control herpes with Valacyclovir. The normal approach is a short high dose. For my MS I use a long term low dose of 2x500 mg a day. My form of herpes is EBV.
There are various foods and herbs that have antiviral properties so maybe you could increase the amount you take through diet. Valacyclovir will be the best route. The advice about nerve damage is borderline right. Some herpes such as zoster will cause shingles which is blistering of the nerve endings. I don't think pool activity will make any difference to that sort of damage at all.
Try Valacyclovir. Some people seem to have a reaction to it but I don't know why. They are more likely herximer responses. It just made me feel better quite rapidly.
Regards,
Re: MS Specialist says I do not have MS, but rather SFN.
Hi,
I also test positive for EBV, which was a big surprise to me because I cannot remember having mono. I was told that most people will test positive. I'm assuming you may have a very high EBV titter value or you are IGM positive. Without this, I'm not sure how I would be able to get a provider to write me a prescription for 1000mg a month of valcyclovir. I have tried this and it does strangely make me feel better. I was prescribed it by an infectious disease doctor I saw over a year ago. Maybe he was trying to tell me something by prescribing it. Unfortunately, this was only a short 2 month prescription.
I also test positive for herpes zoster, but I was told 90% of people will test positive for this since most people have had chicken pox. I have been told that the red bumps on my butt could possibly be chronic shingles. This is why my naturopath doctor recommended I go see her infectious disease partner. He is supposedly well informed about shingles.
I appreciate your replies. Thank you.
I also test positive for EBV, which was a big surprise to me because I cannot remember having mono. I was told that most people will test positive. I'm assuming you may have a very high EBV titter value or you are IGM positive. Without this, I'm not sure how I would be able to get a provider to write me a prescription for 1000mg a month of valcyclovir. I have tried this and it does strangely make me feel better. I was prescribed it by an infectious disease doctor I saw over a year ago. Maybe he was trying to tell me something by prescribing it. Unfortunately, this was only a short 2 month prescription.
I also test positive for herpes zoster, but I was told 90% of people will test positive for this since most people have had chicken pox. I have been told that the red bumps on my butt could possibly be chronic shingles. This is why my naturopath doctor recommended I go see her infectious disease partner. He is supposedly well informed about shingles.
I appreciate your replies. Thank you.
Re: MS Specialist says I do not have MS, but rather SFN.
Hi,
I would go back to the doctor who gave you the Valacyclovir and say you feel you need it again. There isn't a lot of point in measuring a herpes virus level. It stays resident in the cells of the host. Once you have it then you have it for life. How you respond to it depends on a lot of variables. There is nothing strange about it making you feel better. It is very effective.
Even if you only get a prescription for a small quantity it will make a difference. Try and get a longer lasting prescription. Breaking the cycle can help. Then try other alternatives.
The first brand of valacyclovir was Valtrex and it was originally just for genital herpes. Now it is used far more widely and there are even ointments for cold sores that contain it. Doctors have a bad habit of holding back on prescribing it because they confuse it with an antibiotic. It is an antiviral and doesn't work quite the same way.
Regards,
I would go back to the doctor who gave you the Valacyclovir and say you feel you need it again. There isn't a lot of point in measuring a herpes virus level. It stays resident in the cells of the host. Once you have it then you have it for life. How you respond to it depends on a lot of variables. There is nothing strange about it making you feel better. It is very effective.
Even if you only get a prescription for a small quantity it will make a difference. Try and get a longer lasting prescription. Breaking the cycle can help. Then try other alternatives.
The first brand of valacyclovir was Valtrex and it was originally just for genital herpes. Now it is used far more widely and there are even ointments for cold sores that contain it. Doctors have a bad habit of holding back on prescribing it because they confuse it with an antibiotic. It is an antiviral and doesn't work quite the same way.
Regards,