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Undiagnosed

Hi there! My name is Stephanie, I started my search for answers back in march and have still been traveling down the slow road to an official diagnosis. I am feeling very discouraged because everytime I think there is hope of some sort of an answer, I always get crushed when the results come back normal. I have been to chiropractors, OBGyns, doctors, eurologist, had multiple labs drawn including lymes test (which was negative), multiple scans done (like CTs and X-rays) and everything so far has come back normal including brain MRI. First I thought I was out of alignment so I started seeing a chiropractor, but it gave no relief, I also kept feeling like I always had a bladder infection but tests were always normal, then a few months ago I started getting really tired and shakey and I thought maybe I was diabetic and started testing blood sugar and it was always normal. Then I started feeling off mentally and couldn’t remember conversations, couldn’t remember what I was just saying, and had a hard time figuring out words. I cried to my husband and told him I feel like my body and mind are giving up on me. A couple weeks later I called my sister and told her I felt like I had diabetes, dementia, and arthritis. I spent a couple months in bed whether it was fatigue, shakiness, brain fog, or back/hip pain. At one point I thought I had cancer that had spread to my brain and bones but all scans and tests were normal. Then one day I started having really bad pain around my ribs both sides front and back, then my shoulders and shoulder blades started hurting. So I saw another doctor but by the time I saw her, everything was gone and I felt normal again. Then a month or two ago I felt a weird feeling on the top of my hand that felt like there was a hair on it but no matter how hard I tried I couldn’t find it. And I remembered the same thing happening when I first started getting sick last time. Then I started getting really bad anxiety like I had the last time I was sick, then I woke up weak and shakey and tired. So went back to the doctor and she said it sounds neurological and might be MS, she did the touch your finger to your nose test and I failed with my left hand, so she ordered a brain MRI and I felt so hopeful because it would make so much sense and would explain so many things. But the brain MRI ended up coming back normal and I am so discouraged again. I asked my doc about spine MRI and she said she is putting in a referral to neuro. And again, I feel hopeful but also don’t want to keep getting my hopes up for an answer. Now I’m sitting here barely able to walk cause the hip pain, and even sitting upright too long hurts my back and ribs. Im 31 with three kids and just want an answer. And if it’s not MS I wouldn’t even know where to go from there.
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987762 tn?1671273328
COMMUNITY LEADER
Hi and welcome,

Medical limbo can be a long long road and whilst the dr has mentioned MS, it may not end up being your answer either as its actually much more likely to 'not' be a neurological condition like MS.

A spinal MRI i would think could shed some light on a peripheral nervous system situation going on, which could make sense of most of what you have mentioned and account for the normal brain MRI imho.

Totally thowing a thought out there but you said youve had 3 kids, which can cause some hip missalignment issues and if your weight is still yoyoing after having your last bub too that wouldnt help your hips.  Your structural frame might be dealing with more than it can cope with if youve got lower spinal disc issues, keep in mind the non stop work load from the time you get up to the time you go to bed that literally comes with being a mother of 3 kids would be putting a lot of strain on your body so even a small structural issue could end up causing a domino effect.

i wouldnt mention the anxiety and other health issues you thought you might of had, because it will automatically bring health anxiety to the top of the list of potential causes even if your anxiety is simply because of the cause being unknownm but i'd still highly recommend you find a good psychologist or therapist and be protective of your mental health, cant hurt but definitely can be very helpful whilst in medical limbo.

Hope you find your answer soon..........JJ
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One of the reasons I think it could be ms is the fact that on top of the pain, I also go through periods where I cannot communicate properly and my brain doesn’t function, and I end up so weak and shakey that I can’t do simple stuff like plug my phone in, or grab my shampoo bottle. I tried to button my sons pants the other night Island I couldn’t get it connected, so my husband offered his help and I yelled at him “ I got this!! I’m a grown up!!!” And then I cried cause I couldn’t actually do it.
Honestly look at the medication you've been taking and most definitely look at anything for your pain!  What you've said just reminds me of a situation my daughter had around your age, she was dealing with really bad back pain and her GP gave her something to take for the painful spasms she was experiencing.

The medication helped with the pain so she could sleep and she was taking it shortly before bed each night and didnt notice anything was amiss until she took one whilst at work one day and it turned her into a barely functioning zombie.

The medication doesn't necessarily just shut down the pain receptors in your brain, it can make you feel like your cognitive skills have to wade through custard before making sense of basic stuff. Some meds mixed together cause problems you never even considered so its always a good idea to double and tripple check the side effects of any medications your on...

MS is a neurological condition that effects the central nervous system, which means you could throw a dart at just about any symptom there is and it will be associated with MS in some way, but its not generally on the top of the list of causes because there are literally hundreds of more common causes for the same symptoms. MS symptoms have a pattern, not only the type of symptoms more likely to be suggestive of a neurological condition like MS but also how more symptoms then start developing over time....i would consider what your dealing with is more suggestive of a peripheral nervous system issue, and not necessarily the only issue so hang in there and try to keep an open mind on what it could be......JJ
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