mystery diagnosis

[katie87]

I have been diagnosed with : IC ( hunners ulcer variety) endo (mild, on nonstop BC PIll) urethritis with lesions, fibromyalgia, joint pain (wear/tear arthritis) migraines, scolosis, anxiety related to severe pain.

I am still having "pinched nerve" in bottom of feet and hands, loosing feelign in hands and feet with pins and needles, numbness, and pinched nerve pains. BAD PINCHED nerve pains!!!!!!!!!!!!!!! these are in my feet and hands but motsly feet, its like feet fallinng asleep but happens throughout the day with nerve pains. This sometimes coinides with blurred vision, and severe pressure in my skull in the back of my head .

also, severe joint pain and stiffness, mainly knees, fingers, toes. migraines back of the head pressure, muscle pain and sore to the touch in feet , back and legs. chronically swollen lymph nodes in neck and groin. I also get lightheaded and lose my balance and fall, this coincides with my balance and vision being off.

no one has a clue what this is, and i have had blood tests, tested for lyme, neg. tested for rhuem arthr. neg. had cat scan, nothing found. no definciencies in vitamins eithher.

[katie87]

Someone said maybe the pain meds are causing the problems, but i had these issues before pain meds, the only one that is possible for pain meds is maybe the dizzy feeling, and balance, but my balance was off before as well.

[ICNDonna]

Have you seen a neurologist?

Donna

[sailawaygrl]

I agree with Donna, if you haven't seen one, perhaps you should. I have an aunt that was having the stinging burning and loss of feeling in her feet. She just had a ct scan and they found out why. It doesn't happen for no reason. You should find a Dr that will do the tests needed to find out what is going on. I wouldn't put it off.

Sandra

[Darkravensor]

I have very similiar symptoms and my Urologist is sending me to be investigated for my wacked out symptoms. Balance issues, numbness and pins and needles in head, hands, feet, ankles seizing in the middle of the night, swollen glands around neck, swelling in bottoms of feet and hands, memory issues, lack of co-ordination of limbs, head rushes, dizzy spells, shakes etc...

Sjögren's syndrome is an example of a condition that can cause similiar symptoms which apparantly is an overlapping condition of IC according to The International Painful Bladder Foundation. There is some info on this syndrome as well as other overlapping conditions at http://www.painful-bladder.org/pbs_ic_ass_dis.html I am only mentioning Sjögren's Syndrome due to the neurological symptoms it can have and also that it isn't mentioned very often when people think of IC related conditions. According to Sjogren's Syndrome Foundation
http://www.sjogrens.org/home/about-sjogrens-syndrome/symptoms they list much of the symptoms you described.

I edited my post because I didn't want to come across as offering medical advice which is not my intention. I only want to offer suggestions for you to look into with your physician.

[HKay66]

I have to say I agree with Darkravensor that sjogrens can cause these symptoms. I have unfortunately been having a lot of these symptoms as well
and I do have sjogrens. I thought at first my IC was my only problem, but now all this other stuff is kicking in. I think the sjogrens caused my IC, but that is only my opinion, not a confirmed medical fact.
I have a neuro appt tomorrow to follow up more on some of my symptoms.
I had a MRI to rule out MS and that came back normal thankfully.
Keep pursing this. A good rhuematologist &/or neurologist might be able to help you as many autoimmune diseases have overlapping symptoms.

I hope you get to the bottom of it as I can relate how upsetting it is!!

[KathiB]

Katie, you said no vitamin deficiencies, did they specifically check for a B-12 deficiency? I have B-12 def & fibro, and many symptoms that you mention. I have seen a neuro and so far, everything else (lyme, MS, rheum., etc) has been ruled out.

If they haven't checked your B-12, please look into that.

[Mothergoose]

I am getting B 12 shots weekly for the next 6 weeks, my husband asked if they tested my B12 first my Dr. said no a blood test will show your B 12 is fine until you have none, not it is low.

I have had them before they do help with your energy.

MG

[1caligato]

I agree with HKAY66 for anyone reading these posts now - autoimmune disorders often times overlap. some believe IC to be an autoimmune disorder. Also, I have heard when you have one, it is "easier" to get others. I don't know if that's true or not, but I either read it somewhere or a doctor mentioned it to me.

[HKay66]

Just an update to my earlier post... During my last appt with my urogyny
I asked about my connection to sjogrens and IC. He told me (his opinion)
that IC is autoimmune in nature and that absolutely the two were connected.

Also, my neurologist suspected I was low on ferriten (sp?) which is iron.
Blood work showed I was extremely low on iron and that many of my weird muscle vibrations, tinglings, sensations etc. could be related to this. I have been trying to take as much iron supplementation as possible and it has helped! I can't take a lot due to flaring, but try to take as much as possible.
This did NOT show up on regular blood work... she had to specifically request it as it is separate from a regular CBC red/white blood count that would show anemia. Hope this info can help someone!

[KatieB]

When I was pregnant both times I had iron deficiency. I had a horrible time taking the iron supplements due to stomach/intestinal issues. So my ob told me to take something called Slow FE. I don't even know if it's still on the market or not, I think it might be. It still gave me some problems but was so SO much easier than the regular iron supplement. I think it was very slowly time released so it didn't just sock you in the gut like the other ones. I hope you find something that works for you that you can take regularly. Anemia really stinks. Sorry!!

[Mothergoose]

Your system is designed to keep the different levles normal, so if tests show they are low you really are low.

I had problems with iron sup too and sloe fe worked for me, I know there is a newer iron sup on the market that helps raise the levels faster with last side effects, I am sorry I don't know the name. My daughter was on it and had no problems, she dose not have IC though.

My last trip to see my uro he had samples of this newer iron up in boxers in his bathroom, I asked about it and the recep told me they were free samples to take a couple of boxes, the samples were a month supply.

I am can ask my daughter the name she might remember, her levels came back up after a few months so she was not on it long term.

Low iron really does zap your energy, and other things, it made me short of breath.
MG

[bob04951]

Wow Holly, you have one good doctor! :woohoo: Tell her to replicate herself a thousand times and put herself all over the world. Congrats on that. Sorry for all your problems, but sounds like your wonderful doc is way on top of things. Jealous! Maybe she will be the "one" who solves this mystery! Jill, wife of Bob