Has anyone read somewhere if you are diagnosed with TN type 2 and you are under 40 that there is a strong chance you have MS??" Also, is a connection with Peripheral Neuropathy? As I have said in my bio, I haven't been officially been diagnosed with TN but trying to get as much info I can on TN so I can be more prepared on my next appointment with my neurologist so I don't hear "I don't know". I have an MRI appt on Thursday. Any information is greatly appreciated!
I read your post and copied the article below because I think it’s the info you are looking for. I was diagnosed with MS in January 2006. My presenting symptom was TN, and it took years to get that diagnosis. They told me I was crazy and didnt believe I was in as much pain as I said. Then I find out that MS and TN can be linked and that it really was my presenting symptom. I don’t have the energy to explain my situation today, but please let me know if you have any questions, ill be online early in the week.
The info below was copied from
http://www.fpa-support.org/2011/05/tn-and-ms-2/#
Trigeminal Neuralgia (TN) and Multiple Sclerosis (MS)
Incidence
TN may rarely be the first symptom of MS, but usually does not begin until about 11 years after the onset of MS.
When TN is diagnosed in anyone under the age of 40, MS is suspected and should be ruled out.
TN with MS is 18% more likely to be bilateral. It usually begins on one side and after years occurs on the other. It is preferable to treat each side individually, while guarding against having numbness on both sides.
TN with MS is more likely to be atypical pain – dull, burning & constant rather than electric bolt type pain.
1-2% of MS patients develop TN.
Medication
Baclofen is usually well tolerated.
Tegretol, Dilantin, Trileptal, etc. All the anticonvulsants that are used for typical TN can be used with MS, but they may further compromise existing neurological problems.
A study by M. Zvartau-Hind, MD, et al, as reported in Neurology, Nov 2000, showed successful treatment of 6 TN/MS patients with Topomax (Topiramate) with minimal side effects.
A study by Leandri, Massimo, et al, in the Journal of Neurology, 2000, reported the successful treatment of 18 TN/MS patients with Lamictal (Lamotrigine), and with minimal side effects.
Evers, Stefan, et al, in the Journal of Neurology, 2003, reported that Cytotec (Misoprostol), an anti-inflammatory drug was effective in treating TN/MS.
Drugs work by different processes and by affecting different nerve sites, so drug combinations may be beneficial. By giving two medications to control pain, smaller doses of each can be utilized, thus decreasing dose-related adverse effects. These points were illustrated by a study done by Solaro, C., et al in an original paper from European Neurology, 2000 where Neurontin (Gabapentin) was given with Lamictal or Tegretol.
Treatment
Microvascular Decompression (MVD) may be appropriate if a blood vessel is shown to be compressing the trigeminal nerve. In an article which was published in the Journal of Neurology Neurosurgical Psychiatry, 2000, Dr. Giovanni Broggi states that he would not withhold an MVD from any patient with intractable pain even with a negative MRI/MRA.
Glycerol injection
Radiofrequency Rhizotomy
Balloon Compression
Initial success rates for all treatments are less with TN/MS and patients are more likely to have a reoccurrence of pain after treatment.
Research and Tidbits
Research is being done to try to stop damage to the myelin sheath, or to help regeneration after the damage is done by utilizing medications, nutrition, and gene therapy.
A study of MS patients with loss of facial sensation was printed in Archives of Neurology, Jan 2001. In 5 patients, unique lesions were found on the trigeminal nerve root. Similar lesions have been seen during animal studies with Herpes Simplex Virus (HSV), and continued study will be needed to determine the significance—whether a HSV infection causes these lesions, or whether a disease related inflammatory response triggers the HSV.
An incidence of face pain and MS due to a rare headache disorder, Trigeminal autonomic cephalgia’s (TAC’s), was reported in Cephalalgia, 2004 by R. Dave and A. Al-Din. The pain, which was reported to be shooting, stabbing, piercing intermittent and constant in different locations is accompanied by reddening and tearing of the eye, and was initiated by triggers as in typical TN. A MS lesion of the hypothalamus is thought to be the causative agent, and this patient was pain free after being treated with Lamictal.
In the June 1999 issue of Archives of Neurology, Dr. Mathias Hartmann, et al discuss a case of TN pain in an MS patient that was triggered by noise, such as a ringing telephone. One of their possible explanations for this phenomenon was that lesions on the pons allowed damaged auditory (hearing) and trigeminal nerve endings to cross over their impulses.
Thank you MSandTN for this great information. Yes, this is exactly what I had read about being diagnosed with TN under 40 and MS. I know the reason I'm having an MRI done is to rule out MS. No matter what happens, I just want answers but I also have to realize that I may not get answers. I will look for you during the week. Again, thank you for all this information.
Hi gail-- just a heads up on the MRI-- my doc sent me for an open MRI locally a few weeks ago-- when the tech called for info-- he told me the open mri would be useless for diagnosing TN -- he said I needed a closed one with the strongest magnet possible-- I travel a few hours to a major med center to get an MRI machine with a tesla rating of 3.0.
All these MRIs cost the same!! My deductible is really high-- so we were paying out of pocket-- also-- need to get a good picture for diagnosis--
Most doctors are not aware of what is needed for TN diagnosis (or to rule out other stuff) we have to be our own advocates!! fortuneately my doc was not offended by my questions and helped me get what I needed!!
Hi Tacocat, When I go in for the MRI, Im going to ask what type of MRI I will be having. Im going to keep the information you gave me here in mind when I get it done. My neurologist and I have a strain relationship now since I have seem to offend her. She really doesn't want to diagnosis me with TN because according to her I don't have the usual signs even though 3 other doctors suspected I do have it and they are the ones who prescribe me Gabapentin, I'm up to 500 mg a day and it does help with the facial pain although the relief is short lived. I might just have to look for another neurologist if she doesn't continue to dig if the MRI shows nothing. I will keep everyone posted. Thank you!
I would not keep her unless you absolutely have to.....
Go to groups here if needed --- there is a good place to as questions -- there is an MS group
People stay with unsupportive doctors way past their expiration date!!!!!
: )