Need Feedback/Suggestions/Thoughts – Diagnosis Unknown

[Ariel]

I am looking for feedback on what might be wrong with me. Originally I was told that it was RA. I switched Rheumatologists. He said I don’t have RA. Said I meet 4 of the 6 required criteria, so he just doesn’t think it’s RA. However, he ended up telling me that I had Lymphedema. Referred me to a Lymphedema Therapist. Went to see her today, and she said that I have a minor amount of lymphedema at most. She said getting lymphedma now is the result of something else. Told me she thought it would be related to an autoimmune disorder. She suggested I talk to this integrative wellness doctor. So, I stopped by his office today to see about getting an appointment and somebody had just cancelled, so he saw me today. He tells me that he thinks I have limited sclerosis. He’s issued a lab order for me to get tested for Anticentromere Antibody. I went home to look all this up and find out it’s limited scleroderma and that this lab test is run if a person’s CCP is positive. Well, both my ANA and CCP are negative. Plus, I don’t feel I have the typical symptoms related to limited scleroderma. So, I didn’t go get the lab test. I’ve been to several doctors over the last 5-1/2 months and feel like I’m not getting anywhere.

Here’s a brief summary of my symptoms/issues:
Aug 2013: strange 11-day virus, low grade fever, chills, severe headache, neck/back ache, joint aches, fatigue. Tested negative for West Nile.
Dec 2013: Fatigue still present. Doc made a slight tweak to my compounded thyroid med, but it made zero difference.
March 2014: Was out in the middle of nowhere in KS to attend a state basketball tournament. Stayed at a Quality Inn for 2 nights. Second morning woke up with 5 bites on my wrist/arm. Husband and son were not bitten. Bites itched terrible and bled a lot when scratched.
May 2014: Went for a yearly mole check at the dermatologist. Still had the bites there after 2 months due to scabbing/bleeding. She said ‘oh, I see you were bitten by bed bugs.’ Not sure how she could really tell that. Since my husband/son were not bit, I assumed it was some kind of spider.
July 2014: Woke up with 2 fingers on left hand that felt “tight” when I would bend them. Two weeks later, middle finger knuckle on right hand would “burn” when I would bend it. Blood tests: Sed rate 55, RF 15, ANA negative, CCP negative.
Aug 2014: “Tight” fingers in all fingers in both hands. Left hand much worse than right hand. Random knife pains in arms, wrists. Blood test: CRP 10.3, Sed rate 48
Sep 2014: Woke up and both hands showed some puffiness/excess skin on knuckles of hands. Hands looked more wrinkled because of it. Wrists start aching. Hurts if I push down on something. Middle finger on left hand quivers when flexing (not at rest) Blood test: CRP 7.8, Sed rate 35
Oct 2014: Did a week of Clindamycin IV. Day after treatment woke up and both ankles were swollen and some slight swelling on top of feet. Blueness in feet (but have had this most of my life; however, now it’s worse) Blueness disappears when leg is raised. Good heart beat in feet. Started Minocycline. ANA negative.
Nov 2014: Random knife pains, burning knuckle, fatigue improved. Palms kind of shiny/smoothe; other side still has wrinkled skin/swelling. Two fingers now quivering when flexing. When I wave my left hand, those two fingers “wobble”. They look “loose”. Went to Disney and walked the first day (about 5 miles) and was limping the last 2 miles. I was wearing support socks. Second day walked a mile and was feeling terrible burning in bottom of legs. Had to use a wheelchair the rest of the time. Blood test: Sed rate 50, CRP 14.9, Negative Lyme WB, Negative Parasite
Dec 2014: New Rheumy says it’s not RA. Sed rate 17, CRP 11.3, RF 15, ANA negative, CCP, negative. Told I have Lymphedema, but Lymph Therapist says mild and there’s another cause likely autoimmune. Different GP suggests limited sclerosis (scleroderma). Suggested Anticentromere test. My ANA/CCP are both negative, though.

Since this all started, the couple of symptoms that have not left and has been there since I woke up on July 1st is that my fingers feel “tight” when I bend them. If I hold a cell phone or IPAD or glass, etc., the “sides” of my fingers ache. Now I’m getting quivering/loose feeling.

With all of this being said, can any of you offer any suggestions on what I should do next? Has anybody out there experienced the finger quivers when flexing your fingers? I am feeling pretty down. After 5.5 months, I feel like I’m back at square one. I’m still taking the Minocycline. I quit taking it for the prior week, because I was put on a different antibiotic for a sinus infection. Maybe the Minocycline will keep helping me. I just don’t know. But, no matter what, I’m really searching for answers on what might be wrong with me. I appreciate any and all help that any of you can offer. Thank you for reading this and for your time. I sincerely appreciate it.

[Lynne G.SD]

Hi Ariel;
2 questions #1 since you have blueish feet you know you have some sort of circulation problem.Do you have Raynaud’s in your hands.? It usually shows up before full blown SD.You can have SD but negative ANA
Have you had a proper Lyme test?Just about any biting insect can pass it on if it has bitten an infected animal,fleas are stinkers for this as rodents are the biggest carriers….or you could have one of it’s co-infections.You can get Lymphedema if you have Lyme,my doc told me to keep a close watch in case I got it

http://treato.com/Lyme,Lymphedema/?a=s

[Ariel]

Lynn,

No, I don’t have Raynaud’s. I’ve had blueish toes/feet most of my life when my feet aren’t elevated. However, over the last few months, the blueness is worse. I have never had any blueness in my fingers. The Rheumatologist said I don’t have Raynaud’s and said it was Lymphedema.

I have just had the standard Lyme test (WB). I’m going to a new GP next week, so I will ask about the IGenX one. Do I need to take information to the doctor on this test, or do they know how to order that one? None of the doctors mentioned Lymphedema as a secondary issue related to Lyme.

Thank you for your reply.

[Maz]

Ariel, please re-read my PM to you of Nov. 30th. I’ll re-send it if you can’t locate it. While we’re not doctors here and just fellow patients (and none of us can really know what is going on with you), lymphedema is a symptom of ACA (acrodermatitis chronica atrophicans) and it is not recognized easily on this side of the Atlantic. It causes shiny, tissue-paper-like skin with visible veins, and also lymphedema with bluish extremities, just as you have described. Just a suggestion to consider, but it might be wise to get both IGenex labs run and also to consider seeing an experienced LLMD for a clinical work-up to see if this is a possibility. ACA is often misdiagnosed as some form of scleroderma. Either way, however, a LLMD would be a good choice of doc in terms of comprehensive coverage for treatment of the myriad infections that can be potentials in this setting.

Don’t forget to document any skin changes with digital photos. Such photos can aid a physician in diagnosis down the track. 😉

[Ariel]

Maz,

Thank you for the reminder of our PM exchange regarding ACA. I totally forgot about it after being bounced around so much the past week.

How do I go about doing the IGenX test? Do I just request from my doctor or do I need to do something ahead of time?

Can you recommend an LLMD in the midwest?

[Ariel]

Also the top and bottom of my feet are a really dark blue, but when I lift my feet up in the air, the blueness will disappear. Is that how it is with ACA?

[Maz]

@Ariel wrote:

How do I go about doing the IGenX test? Do I just request from my doctor or do I need to do something ahead of time?

You’ll find the info for IGeneX testing in the PM sent to you on Dec. 2nd. 😉

Can you recommend an LLMD in the midwest?

To figure this out, I’d suggest connecting with both the LymeNet advocates for surrounding states as your state doesn’t currently have any listings for experienced LLMDs and no one knows these docs better than the patients who see them. I’d also suggest writing an email to the Tickborne Diseases Alliance and ask them who would be best to see for your particular disease presentation – not all LLMDs will be familiar with ACA or scleroderma and they might have newer listings of which we’re not yet aware (perhaps even in your state). I know of one doc on the east coast who talks about ACA on his website, but as it’s something that might require a very experienced eye, you may not want to waste time with an inexperienced LLMD. This sort of thing really has to be a personal decision based on one’s own situation. If travel to either coast isn’t an option, then Missouri, Indiana or Michigan might be reasonable options as these states do have LLMD listings. LymeNet advocacy groups for those states should have good insight on which docs would be on the “most experienced” list, what they charge out-of-pocket, how long their wait-lists will be, if they offer IV therapy, phone consults, what other supportive services they supply, etc.

http://www.lymenet.org/SupportGroups/UnitedStates/

http://tbdalliance.org/diagnosing-tbds/find-a-medical-professional

Also the top and bottom of my feet are a really dark blue, but when I lift my feet up in the air, the blueness will disappear. Is that how it is with ACA?

This is the type of thing that should be assessed as part of a clinical work-up with an experienced LLMD as, according to the literature, there are all sorts of variances in presentation and several alternate diagnoses, from simple venous insufficiency (http://www.ncbi.nlm.nih.gov/pubmed/3812032) to cellulitis.

If you want to talk more by phone, Ariel, I’d be happy to chat further. Getting listings of doc options first might be a good idea, though. I’m not as familiar with mid-west LLMDs, but some names may stand out.

[Ariel]

Thank you, Maz. Sorry I forgot about the prior PM. I’m definitely more forgetful these days, which is another symptom change.

I will send you a PM with my phone number. Thank you for offering to talk.

[m.]

Very interesting about ACA. I had not heard of it before. Thanks for posting!

[Author]

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