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Old 09-27-2011, 09:15 AM
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poormommy poormommy is offline
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Join Date: Sep 2011
Location: Oakland Md
Posts: 23
10 yr Member
poormommy poormommy is offline
Junior Member
poormommy's Avatar
 
Join Date: Sep 2011
Location: Oakland Md
Posts: 23
10 yr Member
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Dejibo, thankyou for posting. I guess I feel like I have been on the diagnosis trail forever...(I'm sure many feel the same) I was actually relieved to some degree to have someone...anyone tell me it wasn't all in my head..although at this point it appears that some of it is in my head..lol

This whole thing started out many years ago with diarehea..so the 1st dx was chrons...second opinion thought I had spastic bowels...had aches and pains that came with it. (none of their meds every helped except for Flagyl when I really got sick) I also always put up with little things that I thought were just my normal, like seeing stars when stress was too high, odd twitches here and there lasting for a couple of days to weeks. Foot pain became a constant, then it bothered my back. I had no insurance for a few years and just muddled through..I finally got insurance in 2009 and was at my wits end with the pain, so I restarted my effort to find relief.

At first my primary was supportive (live in a small town, not much to choose from) then after he tried a few things he ended up asking me if I needed mental help....Like a mother of two, working a full time job (driving 3 hrs roundtrip to work and back) and running her own business is going to take the time to wait a couple of hrs to see him and then complain about a something of no importance...duh Doc's can be jerks...(I know, I've worked for a few jerks in my years of work in the optical industry).

I switched doc's within the practice and had somewhat better success, he sent me to see a podiatrist, the podiatrist sent me for MRI to check for back issues (had a bulging disk causing some stenosis) from there went to Nuero to discuss the disk, he said it's not bad enough to have sx. and sent me home. The poditrist decided I have might have tarsel tunnel, sent me for nerve conduction testing (mind you these visits are an hour and fifteen the opposite directions from work) the emg resulted in me finding out I had some periphrial nueropathy in left foot. So off to surgery on left foot to complete a tarsel tunnel release. I felt ok during the time I laid on the couch to recover. Then once back at work, the pain started anew and in earnest.

I went back to my primary, he was baffled, ran every blood test he could think of and came up empty handed. I asked to be sent to a Rhuemy since the pain was in my hands as well by now and thus my lower back counldn't have caused that as well. By this time I was already taking Neurontin and Tramadol and amiltripline to deal with pain.

Waited for a long time to get into Rhuemy...finally she saw me, took an hour to get a good picture of who I am and what my family history was. Then ran genetic testing to find I am HBL 027 positive (gene thought to predispose people to certian kinds of arteritis that are not found with the RA type of testing.), she dx'd me with Psoratic Arteritis. So I began to take what she prescribed, (she felt that I have had the pain for so long that I was beyond the first line of treatment they use-had taken all over the counter pain stuff to the degree that my stomach was p.o.'d with me) so on to the second line of treatment called Disease modifying drugs. Sulfazalazine was first, no help, then Humira...6 mos worth...no help actually made things worse. She then decided that I have may have Anklosing Spondylitis because by this time I couldn't bend enough to wipe myself or to pick up something on the floor. AS is a form of Psoratic Arteritis. So she tried to get me into trails for AS. I didn't
qualify as the requirements were very strict (only 250 across the world were wanted). So back to what was left in her arsenal and that is Enbrel. I filled out the paperwork and waited quite a while to hear from them.

In the meantime, I researched the side effects of Enbrel and read up on it on the Kickas.org forum I belong to. Upon reading others experiences, it dawned on me that I had many other stupid little symptoms that I ignored and put up with, in fact I put up with some for years. I started to realize that my issues where not all things from arteritis. In fact, somethings I have had for years and some things were worse since I had taken Humira. On the package of biologics, it says not to take if you have ever had MS. Meant nothing to me at the time. Until i read about someone in my boat that had certain things (sx) become unbearable since taking biologics. I finally sat down and wrote a list of the things that I am struggling with. The list was rather long...trouble urinating and incontinece, heat intolerance, pain in upper areas such as hands arms and neck, etc. , shooting pains for many years, numbness of feet/hands, and many more issues. I took my list and my sore stiff misreable and almost handicapped by this point self back to primary and complained. He didn't seem to think much was wrong, gave me anxiety meds, gave me grief over my hydrocodone need (barely takes the edge off
), told him I will be in a wheelchair before they figure this out...(no offense to others here, this was before I every came to this forum) but he did order mri's just in case...and that's when the lesions and inflamation in brain came up. Apparently there are a few of us out there that have nuero issues that should never be on biologics (nuero doc said no more for me with my brian lesions) . So I am a hybird of sorts, stuck waiting to see where the next turn is in the road.

I hope my experiences will help others like me, since I may be one of <.01% of people that have problems with Humira or Embrel, etc. So I have enjoyed the company of you nice people while I wait to find answers. I do realize that maybe it could be something other than ms, but I personally feel that I am not too far off base. Thankyou for listening...and having a bunch of really nice people here. It helps to pass the time to read and realize that no matter how bad you "think" you have it, others have it much harder. I have always been happier worrying about others...still am. I have the god awful "mom" instict, i have worn myself out mothering all in my family, brother, mom, etc. and the inlaw side as well. They still call on me to support them and give them strength. Only, when I need the favor returned they are not sure what to do...sometimes you only need listen..you don't have to have all the answers, just listen. I get the feeling many of you sage people know what I mean. Jeanne
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"Thanks for this!" says:
SallyC (09-27-2011)