Suggestions, guidance, compassion

[roosevelt4]

One doctor tells me I have lymphedema. Another says not. I am diagnosed with peripheral neuopathy. I have not had cancer and am not diabetic. My foot, ankle and left leg are swollen and so painful in my foot I can barely walk. Doctor says peripheral venus insufficiency. One doctor demads I go to lymphedema therapy. I hate it and has not helped. Neurologist did ANA blood test which was positive for possible autoimmune disease. I haven't seen her since the test. One doctor says I need to be tested for lymph node disease. No one has done that. In the meantime my quality of life has changed drastically. I a in so much pain and cannot wear a shoe on my left foot. One doctor says "be patient. There is alot going on". It has been over 8 months.

[pvanderaa]

Sorry to hear about your situation. Not knowing is really the hardest and is very stressful. Once you know what’s going on, you can start to make decisions and take action.

Have they tested for B12 and folate levels?

Autoimmune is something I’m not familiar with. But my situation 17 years after a very successful stomach surgery for an ulcer, lead to a whole lot of symptoms that went undiagnosed for too long. Once I had a conclusive diagnosis of a B12 deficiency, I could start to work towards a better understanding of what all the symptoms, including anxiety meant.

If you are thinking along the lines of a vitamin B12 deficiency, then I would recommend you start a logbook of all your food, medication and symptoms.

After I started getting B12 injections a whole lot of new symptoms started showing up. Same thing can happen for any new medication. Which I now use my log to assess how it impacts my b12.

I also developed an intolerance of gluten and dairy which a lot of advice attributed to an autoimmune side effect. Who knows?

Are you taking any vitamin supplements?

Have they tested for gout for your leg? My wife had that unexpectedly and it took a while to diagnose.

What is your salt intake like? I get swelling and very itchy legs if I get too much salt.

Hopefully someone with autoimmune experience will be able to give to a better answer.

I can only try to give you one tool you may need along your path.

[roosevelt4 in reply to pvanderaa]

Thank you so much for your reply. As for B12 and folate. The neurologist I have just started seeing did a blood test for B12 and folate The B12 was normal on the lower side, but the folate was 15.0. The standard is 6.0. This might be saying something. As for the extreme swelling and extreme pain in my toes foot and leg, I am told by one doctor that I have lymphedema and I needed lymphedema therapy. I have not had cancer or removal of lymph nodes and no one has tested me for damaged lymph nodes. The pain is unbearable at times and I cannot wear my normal shoes.. I have peripheral venus insufficiency in my leg veins which also causes swelling. It does not seem to me that anyone is paying attention to the pain swelling and discoloration. I too may have gout or an infection and the doctor shook his head in agreement but made no move to look into that. I do have an appointment with an orthopedic surgeon and y neurologist. This has been going on for 8 months and no relief in sight. What does gout look like and can it last all this time if left untreated? Thank you.

[bookish]

There is a connection between lymphedema and hypothyroidism, so a full thyroid panel might be worth getting (although you will probably have to do that yourself - try Medichecks - unless you have a helpful GP) and include antibody testing as you are likely autoimmune. Peripheral neuropathy could be thyroid or Sjogren's (do you have dry eyes/mouth? Those are the most common symptoms but it is wide ranging and can cause many other issues) and I wonder about antiphospholipid syndrome (APS/Hughes') because of the neuropathy/peripheral venous insufficiency. Thyroiditis, Sjogren's and APS often occur together. I would try thyroid check first then possibly try rheumatology. Best advice for autoimmune is to get off gluten as fast as possible, but get a coeliac check done first, just in case, as it is the only way a GP will be interested and you won't want to go back on to gluten later for testing. As a general first read, try The Autoimmune Fix by Tom O'Bryan. Best wishes

[roosevelt4 in reply to bookish]

Thank you bookish. This pain and swelling in my left leg, foot and toes is wearing me down. I do wish doctors would get together talk about their mutual patients. I live in a small area so it wouldn't be that difficult. What would a full thyroid panel consist of. My GP ordered blood work and the put a note in my portal that they were all in normal range. I was also able to view them and one test (of course I can't remember right now) was way off and it had something to do with my kidneys. Guess she knows more than me but I will ask her on my next visit. I do have a referral for a orthopedic doctor and a pelvic vascular ultrasound. I still don't believe I have lymphedema.

[bookish in reply to roosevelt4]

Sorry for delayed reply. For the thyroid you need TSH, FT4 and FT3 testing, but NHS will only do TSH and possibly FT4 if they think TSH is out of range. Medichecks do several options, including antibody testing and some with vitamins too (B12, Vit D, ferritin, folate all important) - have a look at medichecks.com/thyroid-func.... Often they have special offers on Thursdays - 'thyroid thursday' so worth keeping an eye on the site. You could ask GP for a copy of previous results so you can ask for more info, if you don't have them. I now have all of mine and it was the only way I started to make sense of anything! Best wishes