I see here a weird pattern. A lot of us here have auto immune of some kind and TN. I have a very high ANA titer which left doctors baffled as to what I could have. They only thing I have is Raynauds disease. I think something is connected here but don't know what it is. I read an article somewhere which it said that facial pain (nerve Pain) can be a presenting onset of some kind of auto immune to follow. I believe also that my radiologist might have said that people who get radiation, may develop some form of auto immune problem. I had radiation tx for my cancer in 2004. Does anyone have any ideas?
Pain in the trigeminal distribution can be a symptom of other underlying disorders such as MS, Lupus or Fibromyalgia. However, I am not familiar with any verified links between radiation treatment and auto-immune disorders.
Go in Peace and Power
Red
My dentist in 1968 had sujjested that I m MS suspect, since I had bilateral TN, and certain parts of my body had tingling. My right half side of penus has no sensation after nuroctomy on trigeminal nerve which also left half face permanently numb. I did not go to the hospital MS check up till now. Does cutting off the Trigeminal nerve near ganglion lead to loss of sensation on part of penus also? Has anyone had similar experience.
There is no connection between the trigeminal nerve and any area of the body below the jaw line, Yakub. I would suggest that you get yourself evaluated for MS.
Regards, Red
I know Red says there is no known link to radiation and TN. I agree there is nothing written down to support this. However I had radio and chemo on 2003 and have suffered neurological problems ever since. I had none before. There is a subgroup here for TN and chemo etc, we are a small group but some of us are sure we have a link somehow. You are most welcome to join. If people see it on Google they may join to weigh in on the problem and who knows we may one day throw up a link.
http://www.livingwithtn.org/group/tn-after-breast-cancer-chemo
Here is a link to the group, I have changed it now to encompass cancer in general.
In 2004 I became very ill, even bed-ridden. But, I never had any TN symptoms. My ANA was also high. After 2 more years of doctors trying to figure out what was wrong with me I was finally diagnosed with Fibro, Celiac disease, Chiari Malformation & Tethered Spinal Cord. Surgeries for the chiari & tethered cord helped some. Eliminating ALL gluten (Celiac disease) helped too; that was the reason for my high ANA.
Since 2004 I have had a TON of radiation, Cat scans, MRIs, etc..but never chemo.
And 3 yrs ago the TN began.
I have recently had a work-up with a Rheumotologist who said that TN can often be a part of auto-immune issues. He mentioned arthritis (I have), hypo-thyroid, Sjougerns, etc. all being connected in some people. I am anxious to find out more about this during my next appointment with him. He questioned why I had not been put on a week of Prendesone at the onset of severe TN pain.
Hi TL, My Rheumy and Neuro where at odds over this. Rheumy thinks there is no connection between my TN and auto immune problem, my Neuro thinks the auto immune set off the TN. I was put on Pred, am still on it now a year later, this is for the auto immune rather then the TN. Do let me know if you find out more about there being a connection. (mine is Temporal Artritis)
I was put on Pred for just that reason. Did nothing and my Rheumy said to that TN can be early start of auto immune. Especially scleroderma or Sjougerns. So yes he was correct. There is a connection to people who have had radiation tx. The radiation becomes foreign in our bodies so our own cells try to fight it off. I know my Radio Doctor told me that many years down the line you could get auto immune problems. I believe I was getting suttle pains a fews years after my treatments.
TL said:
I have recently had a work-up with a Rheumotologist who said that TN can often be a part of auto-immune issues. He mentioned arthritis (I have), hypo-thyroid, Sjougerns, etc. all being connected in some people. I am anxious to find out more about this during my next appointment with him. He questioned why I had not been put on a week of Prendesone at the onset of severe TN pain.
There was an article I read that said so breast cancer pts. were getting what was called localized scleroderma. It is an auto immune problem where you get thickening of the skin on the outside or inside of you chest. I imagine that can happen any where you receive radiation. I guess maybe thats what my radiologist was refferring to. I don't know but I have something going on. High ANA and High +RNP.
Jackie said:
I know Red says there is no known link to radiation and TN. I agree there is nothing written down to support this. However I had radio and chemo on 2003 and have suffered neurological problems ever since. I had none before. There is a subgroup here for TN and chemo etc, we are a small group but some of us are sure we have a link somehow. You are most welcome to join. If people see it on Google they may join to weigh in on the problem and who knows we may one day throw up a link.
FYI
Radiation-induced localized scleroderma in breast cancer patients.
Source
Department of Dermatology, Royal Hobart Hospital, Tasmania, Australia. nbleasel@hotmail.com.au
Abstract
Radiation-induced scleroderma in breast cancer patients appears to occur in approximately one out of every 500 patients. We report four cases that developed within 3 months of conservative breast surgery and postoperative radiation treatment. The reaction was contained entirely within the treatment field and demonstrated the typical features of this condition where the breast becomes erythematous, violaceous, indurated, retracted, and progressively pigmented. The breast tends to soften and become more comfortable over 1-4 years; however, significant induration, retraction and pigmentary changes remain. There appears to be no predictive factors. Radiation-induced scleroderma must be differentiated from cellulitis and recurrent breast cancer.
Jackie said:
I know Red says there is no known link to radiation and TN. I agree there is nothing written down to support this. However I had radio and chemo on 2003 and have suffered neurological problems ever since. I had none before. There is a subgroup here for TN and chemo etc, we are a small group but some of us are sure we have a link somehow. You are most welcome to join. If people see it on Google they may join to weigh in on the problem and who knows we may one day throw up a link.
The point I am trying to get to is Auto immune is somehow an on set to trigeminal neuropathic pain. I can across an article that a neurologist wrote, but can't find it. My Rheuma doctor said 4% of people with scleroderma have tri gem pain as first sign. people with connective tissue disease can also have pain. So since I have type 2 constant pain, they are watching my titers or any other symptoms could arise. There can be scleroderma on internal organs so there are no outward signs. Very hard to completely diagnosis auto immune disease without visual signs. That's why my doctors are baffled with me.
I believe it did set it off.
elstep said:
Hi TL, My Rheumy and Neuro where at odds over this. Rheumy thinks there is no connection between my TN and auto immune problem, my Neuro thinks the auto immune set off the TN. I was put on Pred, am still on it now a year later, this is for the auto immune rather then the TN. Do let me know if you find out more about there being a connection. (mine is Temporal Artritis)
Pebbles, my Rheumatologist asked me about Raynauds and told me it is auto-immune as is hypo- thyroid and Hashimotos and frequently arthritis. He mentioned that auto-immune issues could also have caused TN (thus the week on Prendesone I mentioned before). My understanding is that the term “connective-tissue disease” is a term that also is used inter-changably with auto-immune. This is all new to me and I am still trying to figure this out so please forgive me if my info is inaccurate or jumbled (to say nothing of that foggy brain stuff from Tegratol :()
Yes about Raynauds, but you could have this alone. Alone without any other auto immune just makes it Raynauds. There is Raynauds disease and raynauds phenomenon. Many people have it their whole life and do not have auto immune. So far thats what I have. My hands and feet blanch white when their cold and then turn purple. I have bad circulation from radiation tx. Connective tissue disease is just what it says. You can google for more info. Doctors think I have something coming, but no signs other than tri-gem neuropathic pain. Its a wait and see. Like I said pred was on 6weeks, did nothing but wreck me. 2 months off it and still have full face, not as bad. Stomach bloat and weight gain. Losing some but can't rest of 5 lbs off. feet still swollen but not as bad. Please don't ask it was a horror. Not to mention the rest of the horrible meds have to live on. Their all poison. Who knows what long term effect all these drugs are going to do to us. Just because you tolerate it doesn't mean your out of the woods!
My Rheumy rubbished the idea of the auto immune triggering off the TN as she had never heard of it happening before.
My Neuro on the other hand said there are many triggers for TN. ( Is this true?)
I am aware of MS, a blood vessel touching the nerve and trauma being a cause but auto immune is never mentioned.
I do not have the Book Striking Back is it mentioned in there at all? Fred on this site is convinced his TN is connected to his testosterone levels. Since receiving treatment for this his TN is in remission. Maybe there are more causes of TN that are publicised.
My Auto Immune is caused by inflammation and the Pred keep the inflammation under control, I therefore think of Pred as my friend. I have to take many other meds (stomach protector, bone protector etc) because of the damage the Pred can do,but without it I would be in a worse state and that is worth remembering.
Since the inflammation has decreased I am in remission with TN, I am hoping that is not just a conscience .
Thank you so much for all this interesting info I had no knowledge of. I cannot diagnose myself of course but since the chemo and radio I have had every illness under the sun. I seem to be refusing to be well even though I live a healthy lifestyle, eat my fruit and veg, drink little and don’t smoke! I sometimes think it is because I am getting older but then look at my peers and definately have much more illness than them.
Pebbles said:
The point I am trying to get to is Auto immune is somehow an on set to trigeminal neuropathic pain. I can across an article that a neurologist wrote, but can’t find it. My Rheuma doctor said 4% of people with scleroderma have tri gem pain as first sign. people with connective tissue disease can also have pain. So since I have type 2 constant pain, they are watching my titers or any other symptoms could arise. There can be scleroderma on internal organs so there are no outward signs. Very hard to completely diagnosis auto immune disease without visual signs. That’s why my doctors are baffled with me.
I guess Jack with something as serious as cancer your immune system is greatly affected and I know you have been suffering with shingles recently and hope your now recovered from that. The most important thing is your still with us today xxxx
Oh Elaine, you are so sweet. That is how I think, it has affected my life but I do have a life, others are not so lucky xx