Question: Hi,

I am still terrified, Dr. Panwar but holding on to my faith in the Lord. I went for a very long walk down by the lake this evening...it was so beautiful. I took my new testament with me. I read that there are milder cases (15-40%) Another site stated only 5% that have a mild progression or stabilize. Mine would be the latter at this time (coldness in arms and can feel a cool sensation in lower calves & sometimes around the ankles when I walk) There has also been some coolness in my back but it is not always there -- it appears as if the middle part of the spine is the culprit. (dorsal root ganglion -- neuronal damage possible or encephomyelitis) It still strongly appears to be a subacute sensory neuropathy (assymetrical small fibre would be the most likely case scenario -- it really does exist)
I will be seeing s rheumatologist on the 8th of May -- I am so scared, Dr. Panwar. (The waiting is so difficult) I hope that he will send me for the tests asap. I will let you know what happens. I feel that I must proceed with the antibodies and FDG-PET scan. I will keep you posted. The suspicion is so strong, Dr. Panwar, that I feel that I must proceed in this fashion first. However, if I do manage to acquire a copies of my previous exams including MRI CD, I will send them your way. I will see what I can do--however, I sense that the situation at hand is urgent and I must try and see these specialists asap. My app with the gynecologist won't be until the latter part of May, I believe. I will be in touch with you soon. God Bless.

Thanks so much again for taking an interest in my case, Dr. Panwar. As I mentioned earlier, the specialists that I saw could not find spinal degeneration matching up with this kind of clinical picture -- abrupt onset, assymetric pattern & symptomology -- coldness more than anything else right now but it was more severe burning and coldness until several months ago. The doctors told me that my legs would not be involved. (actually, I feel cool patches in upper and lower legs & even around the ankles. It was more pronounced yesterday than today. The arms are still cold - the burning is much more suppressed now but is still felt at times at a v low level. (was far more predominant up until a few months ago) All of these symptoms appear to match up with a classical subacute sensory neuropathy -- how I wish it were not so. I have been traumatized for more than a year now because it all seems to be pointing in that direction from where I am standing. (esp when one takes the gynecological info into account although it could be lung) However, I am still trying to remain neutral until I have the results. It has been a year and four months -- such a long and frightful journey but I do have an indomitable will and faith. (the news would still be devastating) The statistics are alarming -- only 20% ever make it to three years. (I am afraid for my dear daughter)The Mayo Clinic has mentioned that some cases can actually be reversed but they must be caught early--one must test positive for the antibodies and the tumor must be found and eradicated before further damage is done. However, one must also respond to the treatment for the neurological deficits as well (most are ineffective) -- 47% will die from encephomyelitis if the tumor does not kill them first. (metastasis or other complications) I will keep you abreast of what is happening to be sure -- there are so many variations -- more test positive for the antibodies;only 16% have the disease and do not test positive. (according to what I have read online) As I mentioned, several of the doctors I have spoken do not believe that it can be a radiculopathy. (even two neurologists -- because of the involvement of the legs) They also mentioned that the radiculopathy would usually only involve one side as well. I could not even find coldness as a common symptom. I wish that I were in a different place where there was a higher level of suspicion & treatment could begin immediately. I could not find any information on clinical trials since there are very few (if any) at this time. I know that I need to know what my current status is before proceeding or deciding upon the best clinical approach. Your opinion is a valuable life line to me at a time when there is so much uncertainty. I get the feeling that this is the kind of situation where there is isn't much time to ponder; one would need to find out what and where the best treatments are in terms of immunological, chemotherapeutic, alternative, experimental -- perhaps specific combinations -- one needs to be in a place where they are open to trying different approaches if certain modalities fail) Still worried that these symptoms could worsen at any time. (esp the coldness in spine)

Thank-you so much for your valued expertise, Dr. Panwar The patchiness of this condition also leads me to fear the worse but as you say, the necessary tests have to be done.

I will let you know what happens in the coming days.