I usually post on the spinal cord disorder board, but I have an odd symptom that I have told to my doctors over the years and they pretty much ignore me because all of the test and bloodwork usually come up with a diagnosis
I have a lot lot of nerve damage which causes a lot weird sensations, crawling things all over my body, numbness, tingling spastisity , this one is one I have not read about on these boards, sometimes I get a heat sensation in and around my ears ,today it is just the right ear, it feels like someone is holding a bic lighter next to my ear , sometimes it last from 30 minutes to 3 hours , I eat spicy foods I get a stabbing pain in my tongue with some numbness and throbbing, ever since I was 15 years old I have had a crawling feeling on my scalp , I am now 59 years old , please has anybody heard of this, thanks
yea it's really rough not getting a diagnosis. I had to schedule an appointment with a rheumatologist about an hour away, a month and a half in advance. I'm hoping this doctor helps me but, Two of my doctors diagnosed me with Lupus, but one of them doesn't want to start me on plaquenil yet she wants to wait to see what the new rheumatologist says. Honestly, it's difficult not giving up altogether. Especially coming close to a definitive diagnosis and then getting told you need a third opinion. I thought one would be enough let alone two but, I guess I was wrong. The city does have the best doctors that's for sure but, I'm hoping they can give me meds for how I am feeling. I am tired of being tired all the time, and sick of being sick. I'm sure we can all pretty much agree on that. It's hard to for anyone to really empathize with me and understand what I am going through. Sometimes I feel like my friends and family think I'm just being a big baby about my health but, I'm not, I'm scared of it getting worse. Anyway I hope it works out for you all.
I feel the greatest compassion for you. It is so hard to know you are really sick and have no medical validation. Especially with autoimmune disease because you don't "look sick". I knew by my mid 20's I had to have some sort of illness. I had mouth, skin and genital sores. I was utterly exhausted. Sunlight made me sicker. Migraines , abdominal pain, sore organs, joint pain. ankle and wrist pain. I would have anaphylaxis symptoms and swell up. Every doctor I went to told me it was all in my head or I had mono. By age 32 I really wanted to give up. I could barely take care of our 4 kids. Finally I was in an ER and the Doc asked me if I had been tested for autoimmune diseases and I said yes, but they were always negative. He said he was certain I had a autoimmune disease and told me to go to a rheumatologist. I went to that appt. and he diagnosed me that day! Just by my symptoms! My rheumie told me that I was in the tail end of the disease and probably would have died soon. So you can be very ill and have no idea, so don't give up!
I hear you! I know how hard this is, not only to be exhausted all the time and in so much pain, but also to run from Dr to a Dr unless you are the lucky one and found a good and knowledgeable Dr from the first time.
I wish you to finally get to the root of it, get help ASAP and to live new year with less health issues... God Bless you!
Missy,
I do have neuropathy as well; I still can walk on most days, but very little, with a lot of pain and for a very short time. I was on Neurontin, Keppra, LUrica, you name it, but it really didn't help much, and side effects were worse than symptoms sometimes so I quit taking them.
Sorry for all what you all going through. I feel very bad and hope I could help you all, dear people.
Moldova
The Following User Says Thank You to Moldova For This Useful Post: missi46 (01-07-2012)
Thinking of you. My sister has an undiagnosed auto-immune disease and I was researching her symptoms and found your post. You are not crazy. You are a strong woman. I wish modern medicine has caught up with you. Take one day at a time. Know that there are people out there that believe and know you are going through more than they can handle. Don't give up hope. You are loved.
The Following User Says Thank You to kessdog For This Useful Post: LeaBeans (05-30-2012)
Hi, I'm sorry you're having such a difficult time. I have a number of those symptoms in addition to a few more. Have you been tested to see if you're HLA B27 positive? If not, you may want to be tested. Blessings to you.
capatga:
Have you ever been tested for Lyme disease. If you have it, it would be chronic and old lyme. There is a special lab in california that is the best lab to test for lyme. It is called Igenix. Just a thought. LaLa
It's been a while since I posted {over a year} but I just wanted to report that although I never got any answers, I made major lifestyle changes and am now almost 100% free of every single symptom I used to suffer from! I am a firm believer that my symptoms are/were allergy or environmentally related so I have been taking Zyrtec daily for a year. I have not had one breakout of hives, no more foggy brain, no more fatigue etc etc etc! The biggest change I have made is my DIET. I have been eating clean for a year now and I truly believe this has helped cure me. I have cut out all processed foods, sugar and most alcohol. Whatever it is out there that was "poisoning" my body is now gone and I am a new person! I have all of my energy back without the help of stimulants and workout 5-6 days a week. Good luck to all of you xoxo
To all of you who have autoimmune symptoms, struggling to get diagnosed: There is a new test called AVISE SLE that is a more sensitive blood test than the standard ANA test for lupus. You can research it online and request the test from your Dr, who may have to order the kit from the manufacturer. Also, if you have muscle pain, burning, weakness, make sure you get CK, a muscle enzyme checked. As previously mentioned, Smith antibody, anti-DNA DS antibody, anti RNP, anti ribosomal, SSA, SSB, RA factor are all good tests, as well as anti-thyroid antibodies. Complement levels are often low in lupus. It is best to be tested during a flare of your symtpoms. I had symptoms of lupus for 10 years before my ANA was positive, and then only at 1:40. So I wouldn't dismiss that when you have so many symptoms suggestive of it. Some Drs will treat you even without a definitive diagnosis if they suspect an autoimmune disease, so I would discuss that possibility with your Drs that seem to care and realize something is wrong.
The Following User Says Thank You to ladybud For This Useful Post: Moldova (02-07-2013)
It's been a while since I posted {over a year} but I just wanted to report that although I never got any answers, I made major lifestyle changes and am now almost 100% free of every single symptom I used to suffer from! I am a firm believer that my symptoms are/were allergy or environmentally related so I have been taking Zyrtec daily for a year. I have not had one breakout of hives, no more foggy brain, no more fatigue etc etc etc! The biggest change I have made is my DIET. I have been eating clean for a year now and I truly believe this has helped cure me. I have cut out all processed foods, sugar and most alcohol. Whatever it is out there that was "poisoning" my body is now gone and I am a new person! I have all of my energy back without the help of stimulants and workout 5-6 days a week. Good luck to all of you xoxo
Dear Bella8286,
I am so proud of you, so very happy; just by changing your diet and life style you are a healthy person now. I am a strong believer in active life style in choosing right what we put in our mouth. Good for you! You should share your experience with others now who may follow your foot steps and get healthy.
Ancient people, thousands years ago, always taught that without healthy guts - no healthy body. To get guts healthy, means eat right. As simple as that. They have now so much information on bad foods, on what we should avoid we just have to read and learn...
I am glad that all your symptoms were not b/c of any serious health issues. Unfortunately for so many of us who have serious health conditions, diet and active life is not the answer. Never hurts to live right and do the right things (I believe everyone should follow healthy life style) but in many cases this is not an answer.
You keep up with good job and enjoy your healthy life!
capatga:
Have you ever been tested for Lyme disease. If you have it, it would be chronic and old lyme. There is a special lab in california that is the best lab to test for lyme. It is called Igenix. Just a thought. LaLa
No I have not been tested , my doctors don't really know what I have, I've had veep, emg,ct scans MRI with and without contrast, balance test , I do have scarring from some mini-strokes ........they are not sure all of the scarring is from strokes because they are old , my doc won't test me for Lyme, I'm not a hiker or been on a vacation in the woods so maybe that's why they won't test me, I have very extensive nerve damage from cervical and lumbar stenosis , myclonus jerking ,tremors ,numbness below the waist ,peripheral neuropathy
tinnitus ,vertigo , splasticity ,restless leg,double vision,anxiety,depression
Cap:
I strongly suggest that you go to a dr who will test you for Lyme. Call Igenix in California and get the kit. Then you need a dr who will give you a lab script or one who takes the blood and send it to Igenix. Another suggestion is to go to a LLMD (lyme literate medical dr). Also, I would go on the Lyme board if i was you. I am not a woodsy person either but I did everything I just told you to do and I tested positive for lyme. I just went to a LLMD that was two hours away from my house. He is retesting me again. He sent my blood to Igenix, I am waiting for the results. Good luck and hope you find answers soon. I know who difficult it is. LaLa
Because of the brain scarring from mini strokes, it is essential that you get anti-phospholipid tests done. If you are positive, you should be on anticoagulants. This is one of the associations with lupus. Also, because of the peripheral neuropathy, please ask for Vit B12 and folate blood levels, often deficient in autoimmune disease, and contributes to the PN, can be supplemented easily. Vit D is often deficient too, so that should be done as well, and supplemented if low. Iron deficiency can cause restless leg syndrome, so an iron and ferritin (stored iron level) should be tested too.
All blood tests and can be done in one draw.
Re: Undiagnosed auto-immune 
