Chronic Urticaria (10 months) gone weird - Please Help!

[baotousmom]

I have had chronic Urticaria for going on 10 months. All allergy testing done, as well as systemic things, Lupus, Valley Fever (I live in AZ) thyroid, diabetes, celiac disease and hosts of bloodwork. Everything came back normal. Shortly after the hives started I also experienced bad chest pains that were attributed to non-erosive reflux disease. Antihistimes are no longer working (tried all the OTC, then Allegra, Atarax, Zantac added too) Now I am getting weird purple looking large spots that are very hot to the touch, they itch less than the hives did, but they are very painful. They also cause swelling when they appear in the joint areas, particularly when on the feet. The CNP in the dermatology practice I am now seeing took biopsies of affected areas to no avail. Spongioitis (sp) was all they said. One recent weird one that came up actually looked like Lyme disease and she biopsied that and am currently awaiting results. The only thing that has stopped it was the short duration of prednisone my GP put me on when they got unbearable. The last few days I have started getting a red, burning area on my shins also very hot to the touch, no hives, welts or raised anything. This also causes a tightness of the skin, almost like a sever sunburn will do. I am at my wits end, feel like a pin cushion after all the biopsies and wondering if there are any other possibilities my doctors should be looking into. I am an otherwise healthy 44 YO woman. All the blood work confirmed that! Family history (mainly mother)  diabetes, Neuropathy, Sjogrens Disease (sp) and some Thyroid problems.  Please any additional areas to look for would be so appreciated!! Thank you!

[baotousmom]

I have done a lot of reading on the internet, and one thing puzzles me. It seems there is no mention of this being chronic, but more something that happens as a reaction to a Herpes outbreak or one of the other triggers. My condition has been chronic for 10 months, it is just the severity of the outbreaks that is more random. Is it known to be chronic? I see them again this coming week and will post how it goes.

[BhumikaMD]

Hi,

It is indeed great to hear that you are satisfied about the line of management and are convinced with the hard work which your doctor's are putting in to come to a definite diagnosis.

You could read about the condition at the following links -

www.emedicine.com/emerg/TOPIC173.HTM

and

en.wikipedia.org/wiki/Erythema_multiforme

Post us if you need any further information or if you have any doubts.

Let us know about how you are doing and post us about what your doctor advises.

Regards.

[baotousmom]

I saw the CNP yesterday. Good news..the 2nd biopsy of the weird thing on my leg came up as no vasculitis. They were concerned about Wegeners and another related one, churg strauss (sp?). Seems what was there a few days earlier is gone, and they wouldn't be if it was a vascular disease like those. They told me they were also sending all my biopsies to Cornell University for a case study. Then they also had the Medical Director and owner of the Skin & Cancer Center, Dr Wolk come see me and he had 2 very clear paths he was thinking. Erythema Multiforme and a Dematitis associated with Celiac. As my regular GP had done a celiac test that came up negative, I think he is leaning now towards the EM. He biopsied a huge blister cluster that came up over this past weekend and one that was just starting, and probably going to confirm his diagnosis. I am blessed to have a team of people who are so determined to figure this out for me. What a great dermatology group! From what I read on the web, I understand EM is chronic though and I will likely have recurrences but it can be kept somewhat managed with a couple of medications. Any input about EM? Thanks SO much!

[BhumikaMD]

Hi,

You should relax - the most important thing to a cure is finding the correct diagnosis.

You should wait for the reports and results to come in, discuss all your doubts with the doctor - ask for a copy of all the reports.

The treatment plan can only be decided after a diagnosis is established.

It is nice to know that the doctor is now taking an initiative to come to a conclusion.

Let us know about how you are doing and post us about what your doctor advises.

Regards.

[baotousmom]

Saw the CNP yesterday afternoon. This new biopsy caught the attention of the pathologist (the large weird one that looked like Lyme Disease) She said it was "startling" Something about an unusually large amount of Nuerifils (sp) not really sure of all the technical stuff, but whatever they were, they were in such a concentration she asked my CNP to request that I give another biopsy of the site for further analysis. All blood again came back normal or negative (Lupus,Hep A & B etc, Vallley Fever, Rhuematic stuff, Thyroid) But they found something that showed I had pneumonia at some point (although I was never formally diagnosed) She said that when whatever it is on this test shows up, I can be sure I have had it at least once. They are going to now check for parasites, The pathologist had my CNP ask some specific questions, something no one has even asked about previously. And actually I had a bad episode with finding a worm in a pork chop I was eating some time mid last year. She requested a few more blood tests tied to the syndromes I think along with the parasite tests. She biopsied the worst of the blisters I had as well. She then told me the other things the pathologist was considering were 2 syndrome's but did not want to elaborate until she had this new biopsy back for fear of worrying me..Well..I am worried now!!!

[baotousmom]

I am going in today to see the CNP so she can see the blisters as a few more showed up yesterday and this morning.

I may find out if the recent punch biopsy on the strange, large welt I had last week has come in with results. (she said it looked like Lyme disease although she is not really suspecting it due to no known bite or recent tick contact). The other biopsies prior as I mentioned had no real info other than the spongioitis (sp). I am on Allegra (day) and was using Atarax (night) but she took me off the Atarax and put me on Doxapin after Atarax stopped working on the really bad itching. I was on Ranitidine (sp) as well but recently stopped as no real improvement on it. Thanks again and I'll keep you posted!

[BhumikaMD]

Hi,

Have the biopsy results come in?

Did your doctor get back to you? The blisters could be due to superadded infection.

You need to reconsult with your doctor about this and get a review examination done if the symptoms persist.

Have you been prescribed any medications?

Let us know about how you are doing and post us about what your doctor advises.

Regards.

[baotousmom]

Something new. Over the weekend I have started to get the itchy feeling I associate with a new hive, but instead of hives forming, I have blisters. These are on the tops of my hands and wrists. All about the size of a pencil eraser. They do itch. Full of fluid. The one I got first on Saturday has already gone down and is now just a red mark on my wrist. Funny thing the NP asked me on my last visit if I ever got blisters and at that time I hadn't, so I said no and didn't think anything of it or ask why. I did call and leave a message to tell her about them in case they are significant to helping her diagnose something.

[BhumikaMD]

Hi,

Glad the post was of some help to you.

Let us know about the biopsy results when they come in.

Keep us updated on how you are doing.

Regards.

[baotousmom]

Thank you for responding. Ill definitley come back with anything new. The CNP did do some additional blood work, some repeats of what was already done and some new.

[BhumikaMD]

Hi,

Considering the long duration of your symptoms, the tests coming out as normal and the doctor's diagnosis - it would be difficult to make any comment without a prper clinical examination.

It would be best to wait for the biopsy results to come in and hope that tey provide a clue to the diagnosis.

Let us know the reports when they come in and post us about what your doctor has advised.

Regards.