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New - Waiting for diagnosis

Jan 16, 2016 10:26 PM

I'm new to the forum. Currently I am waiting on a diagnosis. So far Lupus, B12 deficiency and Rheumatoid Arthritis have been ruled out. I'm 31.

They have me booked for an MRI on Feb 16 and I am still waiting on an appointment for Nerve Conduction Tests.

My story (put shortly): I get numbness in my hands, pain in my wrists and have had headaches/migraines every day since Dec 17. Often I have numbness other places (foot, leg, arm, face) but almost always on my left side.

I have previously been diagnosed with Irritable Bowel Syndrome (2009) and Pelvic Floor Dysfunction (2013).

My doctor is very attentive and has told me that my MRI will be done with MS protocol to rule out Multiple Sclerosis. If my symptoms get worse she wants to send me for a CT but doesn't want to expose me to the radiation at my age.

They are treating me with Imitrex as though my migraines are causing the numbness.

When you were waiting for a diagnosis, was there anything you did to cope? Was there any way to push up the tests? Can you recommend anything I should be asking my doctor?

If you read to the end, thank you so much!

Jan 17, 2016 12:42 AM

Welcome to the forum, CDNgirl! Doesnt sound like an easily diagnosed disorder. If symptoms fluctuate, try using the diary for some time to find out if there are patterns and to better explain it to your Dr. Hope your tests turn out well☺

Jan 17, 2016 9:06 AM

Thank you very much! My symptoms do fluctuate like crazy. When everything started in July it was the numbness with GI issues and no headaches at all. I really like this symptom tracker compared to others :)

Jan 17, 2016 2:16 PM

My goodness, this sounds very similar to what I am currently suffering, minus the migraine. Just had bloods on Friday for the b12 deficiency, blood sugars etc.
Day after New Year's Day, throbbing burning hands and feet with tingling in arms and legs. Also felt like both elbows had been smashed with s hammer. Basically been relentless since then tho have had a little respite for the last day or 2 where it's an irritation rather than throbbing pain. I have been given lyrica but just to rule out peripheral neuropathy but doc states fibro. I have read that taking vitamin b12, amino acid and oil of evening primrose helps with this so I have started to take these a few days back. Very frustrating especially as you look totally fine and these symptoms don't show. I have read bout the nerve conduction test but gp states of bloods are clear its down to fibro. Hate this feel like a hypochondriac!

Jan 17, 2016 3:01 PM

I feel like a hypochondriac too! I'm so grateful for my family doctor. She really goes to bat for me. Was your blood work normal?

Jan 17, 2016 6:40 PM

Welcome to our community CDNgirl37! I'm sorry to hear you are waiting for a diagnosis. I've been there and time seems to drag. But just keep charting and be patient. I also have IBS and PFD, along with pelvic congestion syndrome, sjogrens, hypoparathyroidism, fibromyalgia, migraines & cervicogenic headaches, DDD/TMJD, vertigo, imbalance, tremors, and memory loss/dementia. And that's just the tip of the iceberg since 2010! Lol
πŸ˜‰. Sometimes laughing helps me get through it all. I also have bladder and bowel issues and they tested me for MS with a lumbar puncture, which was negative. But I do have white matter changes on a brain MRI along with the memory loss. One doc says it's dementia but I don't know. And there are many other chronic issues.

I've learned a lot from others on here, like about the cervicogenic headaches, and that having one autoimmune issue (AI) makes us more susceptible to having others too. And everyone is so supportive and helpful. You can rant, praise, cry, laugh, whatever you need, and you will not be judged here. No matter who has what, we all understand what chronic pain is, and what it's like to be judged. This is a safe place for total support. Don't be afraid to ask questions. Someone is usually on here day and night; thanks to insomnia! 😡 Lol.

Have you ever injured your spine? I've had spine issues for 30+ years and have had 2 fusion surgeries already. I've done epidural steroid blocks for severe pain and headaches. The last ESI's were in 2014, and I'm just starting to have headaches again. A good pain specialist, who will sedate you for the ESI's is important. ESI's in the spine are nothing like a steroid shot in the knee or shoulder... It hurts like crap!!! I do get numbness & tingling in my face with migraines, which they've dx as trigeminal neuralgia. I'm having numb, tingling & burning in my feet and hands, and the gabapentin is helping some; likely neuropathy from the sjogrens & fibro. The Plaquenil for the sjogrens is helping the fibromyalgia pain also.

It can and does seem overwhelming at times. But with the support in this community, it's so much easier than going it alone. I hope you will feel as welcomed and find the support you need. Hugs & prayers your doc will get answers for you soon! πŸ™‚πŸ™πŸŒΌπŸ’•

Jan 17, 2016 8:01 PM

Flapperslady - thank you so much for the welcome and support!

I was so relieved to find this forum! I haven't injured my spine that I know of or had any head trauma. I am actually a bit fearful for the MRI. I hate not knowing but at the same time right now I can hope for something curable.

Does anyone have trouble with depression from their chronic pain and diagnosis? I find I'm having some trouble not getting down on myself.

Jan 17, 2016 8:35 PM

Depression and anxiety seen to go along with the chronic issues for most of us. A good team of doctors, depending on your personal needs, is very important. For instance, I have a psychiatrist, psychologist, PCP, endocrinologist, rheumatologist, gynecologist, GI, urologist, cardiologist, neurologist... And yes, sadly each doc is treating me in their specialty. I'm 54 and Ferrell 64+, some days even older. Lol. But it could always be so much worse, so I'm thankful and try to stay positive. πŸ™‚πŸ™πŸŒΌπŸ’•

Jan 17, 2016 11:13 PM

Oh my gosh! That's a lot of drs! Do you ever get conflicting advice? Right now I'm still trying to work and it's getting harder and harder :(

Jan 18, 2016 2:16 AM

CDN, welcome to this community. I am really glad that you found us. Like Flappy said, this is a wonderful place to vent and to get support. I imagine that it must be scary for you to be in your situation especially because most of us want to be in control of our own lives. The only thing we can control is how we react to whatever comes our way. I am sure all this feels scary but I am sure you must be desperate for an answer to what it is. I would be. If I am wrong I am sorry. I was just imaging what it would be like if I was in your situation. I would want to know what I was dealing with right away. I am sorry you have to deal with the numbness an tingling. That must be very agrivating. Sometimes, when things get too numb on me, it gets painful. Does that happen to you? I hope it doesn't.

I really understand the stress you must be under. You said that you are under the weather at times. You may find if you ever were to ask someone who is chronically ill or in chronic pain, a great portion of them are on an antidepressant. Because bad health makes people depressed and depressed people symptoms are worse when they are feeling down. It might be something you would want to talk to your doctor about. It may make your symptoms feel a little better and let you deal better with what is going on.

I really hope that sooner then later you get the answers that you seek. My best wishes to you.
I hope you find this community helpful.

Jan 18, 2016 6:53 AM

Welcome CDNgirl37, I hate that you have to wait until February for any kind of testing. I get Chronic Migraines and suffer with stabbing pain in my feet and have back issues that keep me from doing what I would love to do with my kids and family as well as constant pelvic pain and many other issues. Keeping a track of your pain is a very good idea, it will give your doctors more clues as to what is going on with your body. Prayers and gentle hugs going your way! Don't be afraid to post or ask questions as that is what we are here for you.

Jan 18, 2016 7:16 AM

Thank you very much for the welcome and kind words, profiler and Moparmom.

You are absolutely right, profiler, I hate not being in control. At times I'm desperate to figure out what's wrong. Other times I am scared to know. I get pain in addition to the numbness particularly when I've been over compensating to make up for the numbness. I will talk to my Dr about how down I've been feeling.

Moparmom - I hate it too that I have to wait! I could pay for a private mri but it will be over $2000 because of how extensive of one they want. Thus I wait and let public health pay. Are your chronic migraines a result of something or can someone get chronic migraines on their own? I feel like I don't fully understand what I could be facing.

Jan 18, 2016 2:08 PM

Hi, im still waiting the results in
Hoping to get them Wednesday. Doc said if they come back normal then I don't need to go back- erm I think I will be going back as can't just get left like this!
Suffer awful
Anxiety which gets worse, and all the pain makes it worse. I have just started on a mindfulness course tonight for 8 weeks which is supposed to really help. I will give anything a go at the moment.
When I tell people they are either ignorant to anything fibro or a can see an eyebrow raised. Ppl who know my know I'm
Honest as the day is long and wear my heart on my sleeve, but I still get the feeling that people think it's all in my head, or not as painful as I suggest. Or is that just the anxiety?? Grrrrr. Haha x

Jan 18, 2016 8:28 PM

Dawny, all my blood work is normal except for a positive ANA and no further explanation.

Jan 19, 2016 2:35 AM

CDNgirl, ANA stands for antinuclear antibody and is often increased in autoimmune disorders but its not very specific. Your Dr will/should refer you for more work up with a rheumatologist.

Jan 19, 2016 2:37 AM

BUT: A positive test for antinuclear antibodies (ANA) does not, by itself, indicate the presence of an autoimmune disease. Because of the design of the ANA test, many normal individuals will have a positive test at low titers. Even when detected at high titer, a positive ANA result, by itself (in the absence of symptoms or physical findings), does not indicate that a patient either has, or will develop, an autoimmune disease. Some ANA appear to be unrelated to the development of autoimmune disorders. (Uptodate.com)

Jan 19, 2016 8:08 AM

They did a bunch of extra tests and everything was normal.

Jan 20, 2016 12:35 AM

Well I'm calling today, of course don't want anything to come back bad on them, but if something was up, at least it might be a reason for this! Very frustrating isn't it x

Jan 20, 2016 7:31 AM

So frustrating! I have a followup with my Dr today to talk about Imitrex and whether it is the right thing for us to be using today. I am going to ask if my mri is with contrast and also show her my pain log. I am also going to ask if she thinks it could be chronic migraines.

Jan 20, 2016 11:50 AM

Well my bloods are all fine- nothing abnormal on anything and ironically my "neuralgia" symptoms today horrific! Heels of hands feel like I am holding hot coals, elbows feel like they have been smashed with a hammer, stiffness in my fingers and burning pins and needles in legs!
Back I go either tomorrow or Friday whenever I can get an appointment. Iv been making so many mistakes at work as I can't concentrate. I'm terrified this is going to start and put me on the sick. ( bearing in mind I have only had around 20 days sick in the last 25 years!) the prospect of this really has me scared!
Hope your appointment went well x

Jan 20, 2016 2:25 PM

Welcome CND!! I can't say any more than my special friends Profiler and Flappsy said. Really, just know that we are all here for you and you are never alone. There's always someone here to help you when you need. I'm sorry that you are suffering with pain.
It's a life that can prove very difficult and sometimes frustrating. The good thing is unlike others, we understand. So, welcome aboard and I hope that being with us brings you comfort and support and advise and always some laughs. {{Hugs}}πŸŒ»πŸ™πŸ»

Jan 20, 2016 5:04 PM

Dawny - I hope your symptoms get better soon! What's your next steps with normal blood

Alwayz - thank you very much for the welcome!

Jan 20, 2016 5:20 PM

As for my appointment today, my doctor is amazing. I have to go for an emergent CT this week

Jan 21, 2016 12:26 AM

I am freaked out. She told me last week that a CT scan would only be if symptoms got way worse. She said she didn't want to scare me by sending me but that my symptoms concern her.

Jan 21, 2016 11:56 AM

Cdngirl37, no actually my doctors all seem to be on the same page, except my PCP doesn't want me on thyroid meds but my endocrinologist does. I'll be praying the CT can gives answers but also isnt anything bad!

Dawnypeace, rocking to our community! My ANA was elevated as far back as 2007. In 2010 I had a huge mass removed from my pelvis, and we all assumed it was the cause of the elevated ANA levels. Then in 2012 they dx fibromyalgia, followed by Sjogrens & hypothyroidism in 2015. It's all tied together they said. I oppose you get answers soon. Hugs & prayers! πŸ™‚πŸ™πŸŒΌπŸ’•

Jan 29, 2016 1:42 PM

I suffer from fibro does anyone ever get a numb tongue and trapped wind this is driving me insane any help would be appreciated

Jan 30, 2016 12:07 AM

I have a positive ANA as well with a speckled pattern. All other tests negative except OA in my back and hips. I know something more is very wrong with all the symptoms and pain I have but getting docs to listen is not going well. I've been with a pain clinic but haven't found it all that helpful.

Jan 30, 2016 7:33 AM

I hope they find something out for you soon, Gibber.

Jan 30, 2016 2:48 PM

Yeah flappsylady trapped wind I'm thinking it might have something to do with IBS that's goes along with fibro ???

Jan 30, 2016 2:52 PM

Never heard of trapped wind before. Im guessing it might be a buildup of gas in your intestines that wont leave, farting doesnt get rid of all of it? Dunno. Fibrogirl can you get clarification from your doctor on what that is? Im curious now

Jan 30, 2016 3:20 PM

Thank you CDNgirl

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