Newbie here in Ohio

Hey everyone,
I was diagnosed with Thalassemia Minor back in the early 80's and it really has never given me any problems at all other than some occasional fatigue.
I do have some questions about Thalassemia Minor but I'm going to post those in that section here on the board.
I'm from Ohio and I'm also of German ancestry which I understand is a bit unusual for this.
Now, for the kicker I also have a disorder called Transverse Myelitis.
What is TM..?

Transverse myelitis is a neurological disorder caused by inflammation across both sides of one level, or segment, of the spinal cord. The term myelitis refers to inflammation of the spinal cord; transverse simply describes the position of the inflammation, that is, across the width of the spinal cord. Attacks of inflammation can damage or destroy myelin, the fatty insulating substance that covers nerve cell fibers. This damage causes nervous system scars that interrupt communications between the nerves in the spinal cord and the rest of the body.

Symptoms of transverse myelitis include a loss of spinal cord function over several hours to several weeks. What usually begins as a sudden onset of lower back pain, muscle weakness, or abnormal sensations in the toes and feet can rapidly progress to more severe symptoms, including paralysis, urinary retention, and loss of bowel control. Although some patients recover from transverse myelitis with minor or no residual problems, others suffer permanent impairments that affect their ability to perform ordinary tasks of daily living. Most patients will have only one episode of transverse myelitis; a small percentage may have a recurrence.

The segment of the spinal cord at which the damage occurs determines which parts of the body are affected. Nerves in the cervical (neck) region control signals to the neck, arms, hands, and muscles of breathing (the diaphragm). Nerves in the thoracic (upper back) region relay signals to the torso and some parts of the arms. Nerves at the lumbar (mid-back) level control signals to the hips and legs. Finally, sacral nerves, located within the lowest segment of the spinal cord, relay signals to the groin, toes, and some parts of the legs. Damage at one segment will affect function at that segment and segments below it. In patients with transverse myelitis, demyelination usually occurs at the thoracic level, causing problems with leg movement and bowel and bladder control, which require signals from the lower segments of the spinal cord.

http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm

I was hit May 14th 2008 at 1:00a.m. and within 2 hours I was paralyzed from the waist down. Through some recovery and a year of intense physical therapy I can now walk again with a cane. I have severe fatigue, nerve pain, bowel and bladder issues, almost total loss of muscle strength and mass in both legs below the knees. Also some mental issues I'm dealing with.

TM is very rare affecting only between 3-5 people per million.

So I not only have Thalassemia, I have TM to deal with.

Life is fun and can sure throw you some curve balls.

First of all, welcome onboard

it is sad to hear that you are suffering from thalassemia and TM too... but the happiest thing is that you are fighting.
And this is what life demands from us, struggling and getting on.
wish you all the very best. Keep in touch

Fouad

Hi Kevin,

One point I noticed about the causes of transverse myelitis is poor circulation, which could be related to thal minor. Thal minor can cause circulation problems and hypoxia (low oxygen) in the extremities, so this may be a possible contributor to your condition. Do you know what your hemoglobin or hematocrit levels are? If low, this may be contributing to your symptoms. If so, L-carnitine, magnesium and vitamin E would all be recommended.

Wow, another inspiration for all of us, knowing ppl have different issues to deal with and still the strength to fight the ordeal..... Welcome! and do keep in touch!

Hi Kevin,

One point I noticed about the causes of transverse myelitis is poor circulation, which could be related to thal minor. Thal minor can cause circulation problems and hypoxia (low oxygen) in the extremities, so this may be a possible contributor to your condition. Do you know what your hemoglobin or hematocrit levels are? If low, this may be contributing to your symptoms. If so, L-carnitine, magnesium and vitamin E would all be recommended.

Hi Andy,
No, at this point right now I don't know what my hemoglobin or hematocrit levels are, but I do have a doctors appointment coming up here in a couple of weeks and I'm going to start pursuing the possible correlation between TM and Thal.
As I mentioned, I was diagnosed with thal quite awhile back and really never gave it a second thought all these years. I was diagnosed while I was still active duty in the Air Force. Now, May 2008 I get hit with TM and I still really didn't think about any connection between TM and thal but after researching thal more and more, I've come to find out that thal also affects a persons immune system (correct me if I'm wrong) and TM is something caused by a faulty immune system. So, through all of this there may be a connection here after all.
Up to this point with my TM I've been classified as what they call Acute (happened very quickly...within 2 hours) Idiopathic (No Known Cause). In most TM cases the cause can be narrowed down to something like the individual having a virus (flu) or just recently receiving an immunization of some sort.
My Neurologist calls me his medical mystery.
So, I am going to start pursuing this from the angle that maybe the thal and the TM are somehow connected and also possibly the other symptoms (if you happened to read my other post) I've been having that are being called a "migraine"
I'm glad I found this board and I look forward to some very interesting discussions down the road here.
The best to all of you..!!
Kevin Weilacher

Kevin,

It is known that transverse myelitis can be triggered by various vaccinations, with the adjuvants used, suspected as a cause. Since you have been in the military, I am sure you have been vaccinated and perhaps have received certain vaccinations given only in the military. Although there is some possibility that thal minor could be a factor in poor circulation and even with the immune system, the symptoms of minor are very much related to Hb level, and since your symptoms came on only in more recent years, it does seem unlikely that thal minor is the cause.

http://lup.sagepub.com/cgi/content/abstract/18/13/1198

Transverse myelitis is a rare clinical syndrome in which an immune-mediated process causes neural injury to the spinal cord. The pathogenesis of transverse myelitis is mostly of an autoimmune nature, triggered by various environmental factors, including vaccination. Our aim here was to search for and analyze reported cases of transverse myelitis following vaccination. A systematic review of PubMed, EMBASE and DynaMed for all English-laguage journals published between 1970 and 2009 was preformed, utilizing the key words transverse myelitis, myelitis, vaccines, post-vaccination, vaccination and autoimmunity. We have disclosed 37 reported cases of transverse myelitis associated with different vaccines including those against hepatitis B virus, measles—mumps—rubella, diphtheria—tetanus—pertussis and others, given to infants, children and adults. In most of these reported cases the temporal association was between several days and 3 months, although a longer time frame of up to several years was also suggested. Although vaccines harbor a major contribution to public health in the modern era, in rare cases they may be associated with autoimmune phenomena such as transverse myelitis. The associations of different vaccines with a single autoimmune phenomenon allude to the idea that a common denominator of these vaccines, such as an adjuvant, might trigger this syndrome.

Has this been considered? Do you have records of when you were vaccinated in the military. Is there a possible chronological correlation between the vaccinations and when your symptoms of transverse myelitis first appeared?

Kevin,

It is known that transverse myelitis can be triggered by various vaccinations, with the adjuvants used, suspected as a cause. Since you have been in the military, I am sure you have been vaccinated and perhaps have received certain vaccinations given only in the military. Although there is some possibility that thal minor could be a factor in poor circulation and even with the immune system, the symptoms of minor are very much related to Hb level, and since your symptoms came on only in more recent years, it does seem unlikely that thal minor is the cause.

http://lup.sagepub.com/cgi/content/abstract/18/13/1198

Has this been considered? Do you have records of when you were vaccinated in the military. Is there a possible chronological correlation between the vaccinations and when your symptoms of transverse myelitis first appeared?

Hi again Andy,

Wow, thanks for posting that and I'm going to use that source for the resource website that I'm an admin of for TM. I appreciate you finding that.
Anyway, vaccinations are the primary cause of TM in most patients and that was highly considered when my TM first hit.
Thing is, I retired from the Air Force in January 1997 and even though I did receive quite a few different types of vaccinations while I was active duty, every single one of them was ruled out as the cause. Since retiring, the only vaccinations I've been getting are the annual flu vaccine and even that has been ruled out as the cause. The reason it was ruled out is because even though it has caused TM in some cases, when it does cause TM, it occurs within a matter of weeks. The flu vaccine only causes a compromised immune system for a very short amount of time, so if it's going to happen, it will happen fairly quickly and I had my flu vaccine that year more than 10 months prior to the TM onset.
This was something the doctors pursued quite aggressively because they were bound and determined to find a cause. Unfortunately even to this day no doctor has been able to determine the cause of my TM.
That's why I want to try and pursue any possible correlation with thal and TM. If there is one then there are some unanswered questions that will have answers. If there is no connection then I start over with another possibility, because I also have Gilbert's Syndrome.

Thanks again so much for that info, I'm always on the lookout for anything that I can use to provide to my TM folks.
Kevin

First of all, welcome onboard

it is sad to hear that you are suffering from thalassemia and TM too... but the happiest thing is that you are fighting.
And this is what life demands from us, struggling and getting on.
wish you all the very best. Keep in touch

Fouad

Fouad,

Thanks for the welcome and I appreciate being here. I am learning quite alot about thal just from the few short days that I've been a member of the board, learning things about thal that are very interesting and even though I've had thal minor since the early 80's, It's something that's never really been in the forefront of my mind until now.

You are right in saying that life does demand alot from us sometimes. There are days when you wonder to yourself how you even manage to smile. But, that's what you have to do....keep smiling.
The road is tough, you gotta make the best of it.
Take care and be well.
Kevin

Wow, another inspiration for all of us, knowing ppl have different issues to deal with and still the strength to fight the ordeal..... Welcome! and do keep in touch!

Hi Lyanne,

Thanks so much for the welcome. It's appreciated to be welcomed into the group. Yes, many times too, realizing the different issues that people are dealing with and the strength that they gather within themselves to deal with and overcome those issues amazes me sometimes.
I try my hardest to make the best of things and usually do fairly well, but there are days when it is hard to even muster a smile.
In the end I realize, I can't give up, I have to keep pushing ahead.

Thanks again and take care,
Kevin

Hi Kevin... and welcome, fellow newbie! I am ßTM too.

Hmm. I think Andy is wondering the same thing I am. But are you satisfied with the Military's response to vaccinations being eliminated as a cause of your TM? What's in their best interests and what's in your best interests are often not the same thing...
Anyway, I've always opted out of vaccinations, ie, flu shots, etc, because of ßTM for these very types of concerns, right or wrong. It's certainly worth researching any possible connection, though.

Good luck and peace in your quest for answers towards your restored good health!

cheers

Hi Kevin... and welcome, fellow newbie! I am ßTM too.

Hmm. I think Andy is wondering the same thing I am. But are you satisfied with the Military's response to vaccinations being eliminated as a cause of your TM? What's in their best interests and what's in your best interests are often not the same thing...
Anyway, I've always opted out of vaccinations, ie, flu shots, etc, because of ßTM for these very types of concerns, right or wrong. It's certainly worth researching any possible connection, though.

Good luck and peace in your quest for answers towards your restored good health!

cheers

Hi Deb,
It's not the military ruling out the vaccinations as the cause of TM. I've been retired from the military since January 1997 and my TM just hit May 14th 2008. My civilian doctors have pursued any types of vaccinations I may have received while I was active duty. I have records of all the vaccinations I received while I was active duty and that was thoroughly checked to see if there was any chance that any of those vaccinations could have been the cause.

I didn't have the option of opting out of vaccinations while I was active duty. They were required and if we refused then that was grounds for discharge. After I retired I continued to get the annual flu shot only because I had a sense that it perhaps kept me from getting the flu. I've gone for probably 20 plus years without the flu...(knock on wood) and with me having TM now, it is recommended that I get the H1N1 also because of the compromised immune system.

Anyway, the questions continue and hopefully someday the answers will take their place.

Take care and the best to you,
Kevin

Kevin,

I am not in any position to comment on your health issues, But i will say one thing - Never lose hope and Always Keep smiling.

Most often, this sounds like useless advice, but it has gotten me through some very hard times, when there was nothing else available to me. All i would tell myself is, this too.. shall pass.

I have very low pain tolerance, so many times I am screaming in pain even with an injection, but within a few seconds (with an ice pack still on my backside), and with tears still in my eyes, I can genuinely laugh at a joke someone has cracked! And it surely helps me get through that moment.

At times it takes several years to overcome problems, I wont deny it, but I never ever lose hope! When we're in a better state of mind, without anxiety or depression, we can focus better on the medical efforts.

I've noticed my health issues feel comparitively worse, when i have been stressing too much or if i'm frustrated.

I am in no way discounting anyone's health problems here, so I mean no offence, I have tons of medical reports myself. (Which I cant even carry for long, since i get tired very fast.)   

Sorry if i have not been able to express myself well enough. But i hope you understand what i'm sharing here.

Regards.
 

Kevin,

I am not in any position to comment on your health issues, But i will say one thing - Never lose hope and Always Keep smiling.

Most often, this sounds like useless advice, but it has gotten me through some very hard times, when there was nothing else available to me. All i would tell myself is, this too.. shall pass.

I have very low pain tolerance, so many times I am screaming in pain even with an injection, but within a few seconds (with an ice pack still on my backside), and with tears still in my eyes, I can genuinely laugh at a joke someone has cracked! And it surely helps me get through that moment.

At times it takes several years to overcome problems, I wont deny it, but I never ever lose hope! When we're in a better state of mind, without anxiety or depression, we can focus better on the medical efforts.

I've noticed my health issues feel comparitively worse, when i have been stressing too much or if i'm frustrated.

I am in no way discounting anyone's health problems here, so I mean no offence, I have tons of medical reports myself. (Which I cant even carry for long, since i get tired very fast.)   

Sorry if i have not been able to express myself well enough. But i hope you understand what i'm sharing here.

Regards.
 

Hi Preety,

Thank you and your advice is taken as you meant it. I always try to keep hope alive and always try to smile. I've always been a very positive and optimistic person and I'm not one to let this get to me.

I will say though that there are days that are extremely tough to get through and I am making it with the help of some medication too. At the initial onset of my TM I went through a very deep depression and I am still working on getting through some of the rough parts.

Myself, I have a very high pain tolerance and even with the help of pain meds, have a constant issue with pain through the day.

I try to keep myself busy and my mind occupied to keep it away from thinking about the pain. Because of the meds and also the pain, I also have a very bad attention span and cannot concentrate on any one thing for much time at one sitting.

Therefore, I have gotten myself involved in quite a number of various hobbies, organizations and websites such as this one. This allows me to keep my mind active and when I get to where I'm going bonkers with one thing, I can take a break and then come back and start off with something else.

Anyway, you expressed yourself perfectly fine. I understood exactly and thank you for your words.

Take care,
Kevin

There are days when you wonder to yourself how you even manage to smile. But, that's what you have to do....keep smiling.
The road is tough, you gotta make the best of it.

Thanks Kevin, Yes that's the only way to live a happy life. Life won't be easy without this little tool; smile
Take care

Fouad

Kevin,

Have you ever been tested for any metals? Mercury, aluminum?