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MS? Fibro? - Still no diagnosis. Anyone else in similar situation?
So, wondering if anyone is in a similar situation, with similar symptoms. Gave birth to my second child, my son, in April of last year. Recovery went well (2nd csection). In June, I started feeling terrible aches in my joints. Thought maybe I had arthritis starting. But I didn't have any swelling. Saw my family doc and she chalked it up to be post partu, aches. By August, I had terrible pain in my left hip, knee, and lower back. She sent me to a rheumatologist, who ruled out fibromyalgia, arthritis, and said it was bursitis. Put me on daypro. Two weeks later, the pain had become so severe that my family doctor got me in with an orthopedic surgeon, who gave me a steroid injection in my left hip. Worked for about a week, and was back. By October I was struggling to walk. Felt like my leg was dragging, losing feeling in it. My legs would itch for no reason. Lower back and leg pain was excruciating. Started using a cane. Orthopedic surgeon ordered MRI of hip, pelvic area, and lower spine. Everything came back normal with the exception of a hemangioma on vertebra L2. So, they sent me to a neurosurgeon just last week. By this point, pain was in back and both hips now, and my left arm is getting weak now as well. Crying at the thought of using a walker. Meanwhile, my fam doc puts me on neurontin. Worked well for a week, then started losing its effect. They increased my dose, worked great. Now losing its effect again. Had brain MRI done, and that came back normal. Now I'm being sent to a neurologist. But I still have no diagnosis and feel like I'll never find any kind of medicine or therapy that helps for any length of time. Fam doc suspects MS, neurosurgeon said fibromyalgia. Doing research on the conditions confuses me. If MS didn't show on the MRI, then I have a feeling they'll diagnose me with fibro. But, I don't have any sensitive to the touch points associated with fibro. Anyone have any thoughts to help guide me in my pursuit?
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Also, I have been blind in my left eye since a I was very very young. Eye doctor has told me the nerve is dead. Nothing they can do. Vision in my left eye has gotten dramatically worse over the past few years, and I fear being blind completely. Before the neurontin, I also had tremors slightly in my hands, have fallen a few times, would have muscle spasms in my legs and back, and the back pain was now in my middle back, and neck. I almost get hot flashes, and then other times I just can't get warm. I can't stand being hot. I wake up in so much pain, and am tired all day long. No matter how much sleep I get. I fight taking naps because they only seem to make it worse. Feeling frustrated!!
Hi @puzzledami,
I'm so sorry to hear that you have such pain and no answers. I can imagine you are frustrated and at your wits end. I'm glad you found us here on Connect and I hope to connect you will other people so you at least don't feel alone in your pursuit for answers and relief.
I'd like to introduce you to @cheriroberts and @oceanfun1 who both recently posted to the Brain & Nervous System group. I hope they'll join this discussion thread.
How are you doing today?
Colleen
Connect Community Director
Thank you! Ugh, neurontin is slowly but surely not doing the trick again. Thank you so much for the contacts! It seems all I do after my kids are in bed is read up on as much medical info as I can. After months of doctors, and even my husband, seeing to not believe me, I'm finally being taken seriously! I've learned just how important it is to be a strong advocate for your own health. Praying soon that I'll be able to resume painting and other hobbies at night, rather than searching for answers! Thanks again Colleen!
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1 ReactionThis sounds like M.S. to me. It does affect your eyes, back, and legs. It's hard to diagnose but I read it can be seen by MRI. I know of a physician many years ago who treated someone in the hospital with massive doses of Vitamin C.by I.V. and they were so much better for many years, and able to hold down a job. Check with another doctor if you don't get some answers soon. Hang on and sending warmest wishes for you to be better soon and to know what the diagnosis is.
After reading your first post that I missed, I don't know why exactly, but a condition came to mind. Please check out Cauda Equina Syndrome. At the end of your spine is the conus which some call the horse's tail. There is a bundle of nerves there that can cause terrible pain. This started after your second birth, csection, and I'm wondering if there was some damage to your conus(end of spine) during this delivery. You can read what others say about this on Healthboards.com by typing in Cauda Equina Syndrome in the search bar there but first you have to click on Message Boards or Find a board. I so want to see you taken care of soon. God Bless and may your husband help you with your new addition. I don't know how you can do it alone.
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3 ReactionsI just want to say that I understand your journey through doctor after<br />
doctor and the frustration and fear of not knowing what is wrong. For me it<br />
was always thinking the next doctor would be able to figure it out or a<br />
test would show something. I have fibro but it does not connect to me that<br />
it would be a correct diagnosis. Weakness in your limbs is such a major<br />
factor for you and while I have that as well it is not as severe nor did<br />
it progress so rapidly. I would also question it because you don't have<br />
pain at the pressure points. After I had my second child I got extremely<br />
ill as well and went from doctor to doctor. While the solution was a simple<br />
test for me nobody did it. I had lost my thyroid function. You have my<br />
total sympathy and prayers.<br />
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3 ReactionsWell, after seeing my neurologist, who sent me for loads more blood work and such, he now has me set up to have another MRI done, a lumbar puncture, and a nerve test. But I noticed he ordered a Lyme test. Which got me thinking, right before this all started happening, I had discovered a bite on my leg. (Mind you this was 7 months ago). Luckily, i had taken a picture of it and had saved it. (It was strange looking, but didn't hurt or itch, so I just disregarded it at the time.) So, I emailed it to him, asking if it was a tick bite. He responded with that he was sure of what type of bite, but to wait for the lab results. Yet, there have been no confirmed cases of Lyme in my state since 2007. Just so aggravated with no answers yet. He could've at least told me what type of bite it was! Lol
Lyme test and others came back negative. Back to square one for me. Ughhhhhhhh
So sorry to hear it is back to square one Puzzledami. What are the next steps now?
@puzzledami how are you doing now? Did you ever find out if it's MS or something else? I completely understand how you felt, I have been feeling the same way for the past 3 years, and no answers yet. Whenever we hit a wall, doctors just stop searching. In 2017 I was diagnosed with Fibro at Mayo in MN. I can distinguish the pain between Fibro and something else. This is not the same pain! And there are no painful touch points like fibro. I was diagnosed with thinning of retina, too. I also have high positive ANA and a possible Sjogrens. I have two autoimmune diagnosis confirmed: Microscopic Colitis and Granuloma Annulare. GA is a skin condition, with painful lesions on hands. Now extended to my feet and toes. When I am in some flare up, GA goes nuts with the inflammation, and I can barely use my hands. I am trying to go back to Mayo again, and push harder for answers. Btw, two of my friends had no lesions on their brains on MRI scans, here, locally (Iowa) and few surrounding areas. One of them went to Alabama to some neurologist and after ONE MRI he told her she has multiple lesions and confirmed MS. She's in a wheelchair now, can't speak much, etc. The other one is still looking for answers, and she also diminished A LOT! So, if you hadn't found out yet what's going on, DO NOT GIVE UP!! This is your health and your life!
P.S. If anyone else has something to share with me, please do. I just joined this support group with Mayo. Thank you and I hope all is well.