Just more problems : Hi all well the... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Just more problems


Hi all well the last couple of months i have been having loss of mobility turns my head to the left . Even after my monthly back shots and them concentrating on the left side of neck clear to the skull {OUCH } it seems to at this point come right back and i can't turn my head to left again .The pain is very strong even my pain meds won't stop it and the pain now is going down the front of my chest down by my peck muscles an MRI done and they were concentrating again on C-2 C-3 and so on but i haven't heard much yet but have read the report myself and it doesn't site any problems that i cab see but the Doc. did say blood vessels in that parts of neck could be a concern . NEXT my knuckles on hands the skin is swelling and splitting with a clears fluid coming out but crystallizes to a clear solid in very short amount of time-and the thumb swell to 3 times it's normal size and the pain is crazy . I should be getting an appointment at The Wound Center very soon - Those of you who have known me since 2014 will remember my heels skin and flesh rot this day they still don't know what that was . i showed my New PCP the pic's of that and the skin on the back of my neck that breaks out also what my feet looked like back then { i don't think it is the same }. Well it all seems to be coming back ACCEPT the foot rot . Does this ring a bell with anyone or some one had any of this . ?? let me know please .

Thanks Casey and Jet

11 Replies

HI, I get Stevens Johnsons type episodes which does cause similar problems, a) if I use a drug that my body is not used to or previously allergic to, or indeed my own infections. I am enclosing this in case it is relevant to yourself: ncbi.nlm.nih.gov/pmc/articl... Also have you ever had your Thyroid tested beyond the TSH test? MaryF

jetjetjet in reply to MaryF

I looked it up - printed it off - and brought it to them and they didn't believe it was the problem - i thought with the Hydroxy being brought up and it can be the result of some meds ?? But none did blood work but i had a couple of panels done just recently i will check some of them .

jetjetjet in reply to MaryF

Yes my friend Mary , I did have them done as i follow you advise and i even tell the Doc'c just what you say --Wisdom leading to advise an a kinda of a rule of thumb testing base lines .- I just did it all in range T-3 T-4 Vit D just under reference , taking supplement now also did B-12 was on high end of range and INR came in at 3.9 with PT @ 31:6 So all that was just done All this done on 9- 21-18 so pretty recent . I just have so many issues it's a wonder that i am not labeled with the H word. I did have one doc. that was lets say not real warm to what he was seeing . If it hadn't been split open at the knuckles as i am at this time i was seeing him he would of been saying disbelieving things as the swelling had gone way down { kinda like when you bring your car to the shop for noises that you hear but when you get there it doesn't make the noise !! just like that then you drive home and it makes the noise all the way home } but i did have the open lesions in the skin over all knuckles that were evident . got a cream from new Doc at Dermatology { My friend and long time Doc. Deljudice retired a year ago :-( } - to put on it as well as my steroid cream . Time will tell with the combination of these topical ointments . Thanks M As always

I am so sorry to read this, I have been having sore neck issues, My doc thinks its muscular and my husband is pretty sure its the result of hacking and sawing a still green small tree which had fallen over a hiking trail. But my neck has always -as in since my teens - crackled audibly when I turn my head too much. Let me know how things go. You are in my prayers.

Hi Jet,

Oh....... sorry that the pain is still there! I do not know what to do to help you. Wish I could though, very much. Has the anticoagulation and a steady INR at a rather high value any importance to the problem. What do they say about that? Is the new PCP (do not know what sort of Doctor that is) responsible for your APS and also anticoagulation?


jetjetjet in reply to Lure2

you are right in that she is my { primary Care Physician } She is a resident {almost a full fledged doctor } i just got her when my last Resident Doc {Dr Mark Prodger graduated and passed his last and final testing and he did it with me over ALL his other patients !! I allow them to use resident Doc's because the have the want to learn and i believe it gets our message out further and this is good for us . She is responsible for keeping track of all my radiation - tests - etc. she is my nucleus of all that goes on and i also my Supervising nurse that has been with me for almost seven years and knows more about APS than all the Doc's do there at Concord Hospital - she is the one nurse that when she started there and saw i was assigned 3 nurses and they are the only ones allowed to deal with me - and she asked me if she could be one of my nurses because she has two son's hemophiliac and she knows that at that time anyways i was very up on this APS { and my memory was still working } and i could help her with her two sons !!!! and she has been with me thru the { GOOD THE BAD AND THE UGLY } sort to speak . And my new PCP Linda has set her up to follow everything from now on with me and this is great because she is my best contact person for all Doctors appointments - testing - and complaints that may occur so that is how i am set up Kerstin . So she is not my specialist but she knows all from the specialists such as -- Hemo - Gastro - Memory - Rheumy - Pain Care -Endocrinologist - Dental -Nuero- Optometrist- Blood clinic {was there 7 times last week !! And they keep track of it all even though it comes many different hospitals .

Have they checked your blood uric acid? Could this be uric acid crystals? Just a thought. Be careful if you apply any ice because if it is uric acid it could aggravate the symptoms... sorry you are feeling so unwell, Cindy

Don't know if they did - will look into it though Thanks

WELL all - I am going to have shots in the Medial Branch in the C 2 & C 3 cervical spine to try to a leave the pressure and i am not quite sure of any more as i was in for my shots in neck and back and that isn't in a room where there is a computer set up for my records an appointment that you can discuss things BUT i did pressure Dr Steve about why so long for MRI results and i had other doctors waiting for the results so he did go to other room real quick and look at them quick again and said this is what I will be getting and the rest of the info i will HOPEFULLY be picking up Monday as his after visit summary wasn't done by the time i left let alone what these next will be and this i am sure my other Dr's would want to know also . I will have a office visit for just this on the 26 TH of this month and He did schedule the room for the 29 TH { which was amazing to do as that usually takes time I was told as i was checking out } of this month with the monster machine that hangs from the ceiling in there with the special bed-bench what ever you would call it {never been in that room , just looking in there scare's me HA } .as i said he didn't want to go into it much more because this was a TPI appointment and they are short .If it indeed works i may NOT have to have the TPI shots every 28 days any more i hopefully will be able to turn my head to the left of which i can't do at all now . think it is line with taking pressure off a pinched nerve possibly - i wasn't much with it mentally in the appointment as Casey has been very sick again the last week or so and i am just wiped . not much sleep and a lot of stress.So much going on many more appointments coming up with the specialists and INR Crazy. BUT this MRI thing and also the swelling splitting knuckles on an ointment plus my steroid cream for that - they are an up and down thing--and they have also been a problem and now complete urology work up being started next week starting with prostate, blood work etc. all a bit much on my nerve's-I am hyper anyways and got it coming at me form all ways and all at once again .But tuck and roll i guess .Not much else I can do accept stay on top of it and the ground :-) .

A very Sick little Casey and Me SMILE :-)

Wittycjt in reply to jetjetjet

I hope Casey and you will begin to heal. Best of times are cominggggg

Thanks from Case and I we are just taking them as they come !!

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