Hi there everyone-
I am writing to all of you today hoping all of you who have had a long road to diagnosis can help me find the strength to push forward and not let this depression swallow me whole!
Im new so I should start with my story. I am 25 years old. I was a dancer and very active in general my entire life (not long I know ;-) ) But a couple of months after having my 2nd son (last child) in july 09 I became very sick. Dizziness with vertigo, severe stabbing headaches, and unrelenting fatigue was where it all started. I was in and out of the ER for the pain they kept thinking I had a tumor or something. Finally they did a brain MRI in jan 10 which showed some sgins of demylineation and white matter lesions. I was sent to a neuro. He was an idiot for starters. But he did a spinal tap and it was fine. Then after tons of blood work and other tests they decided to do another MRI in about march of 10 then sent me to an MS specialist. I was feeling better in april of 10 and he reviewed my newer MRI said it was totally fine. Did an exam ...looked fine. He said it maybe MS at some point but it isnt yet. so I felt like my normal self...we decided to have another child in october 10 lost in in december 10. january 11 I became very sick again. whatever is was came back with a vengence. I had most of my other symptoms as before. nausea, dizziness, vertigo, fatigue, severe headaches etc. I was diagnosed with possible autonomic disorders in april and was placed on meds for vertigo, blood pressure, and nausea/ I felt like this the bulk of the year but didnt think too much of it and the meds covered up the bulk of the problems. my husband was laid off in nov 11 which lost us our insurance. Im pretty sure the stress of it made everything worse. around december I got worse and worse and worse.(still no insurnace so I havent been able to go to the dr) Now added to the other problems...i have a burning stabbing pain in my left eye, feel like Im standing on a hot black top or something, sometimes the are pokey if that makes sense, puffy feet (toes ankles etc), tired achy heavy legs (I feel like I ran a ton or walked too much even though I havent and anything that increases blood flow makes it worse (stretching, light exercises etc), sometimes my hands shake, i keep getting back spasms for no reason, I have signs of dyskinesia (coming from a chiropractor), i have random bouts of chest pain (feels like im wearing a corset and no I dont wander around wearing one lol) and all this has led to some serious depression. Im on meds for it but they can only help so much. Also Im pretty sure Im starting to have bladder leaking issues. And all of this has gotten so much worse since about the middle of july...ever since the heat waves hit. Ive been told it sounds like MS and that it takes awhile to get diagnosed. But I am scared out of my mind because last time I was sick it went away. I have been sick so a year and a half straight and all its done is gotten worse with worsening symptoms and new crappy ones. I didnt have have these leg issues even a few months ago and im just scared that if they keep progressing the way they are Im not going to be able to walk before I can even see a dr let alone get a diagnosis! I know many on you have had your fair share of struggles..Im just wondering what you think? MS? How did you get thru it? Thankfully my 2 boys and my husband are by my side and support me. They are what keep me going most days. But some days...like today...I cant handle it. Seeing my kids so worried they are old 5 and 3. My oldest tells me hes going to do great school so he can be a dr so he can fix me. It breaks my heart! PLEASE give me strength!
Hi and welcome to our little MS community, if you haven't looked at them yet, please have a read through our health pages, found just to the right of your screen, i'm sure you'll find many of them very interesting.
The biggest confusion I have is that you have demylinating lesions, sx on par with MS, and your definitely young for brain lesions still in the most common age group for MS, gendar and even sx pattern but still the most you got from the MS specialist is that "it maybe MS at some point but it isnt yet". I suppose in defence of that comment, he could of been refering to not 'yet' having enough diagnostic evidence so he wasn't able to dx (see Mcdonald Criteria- http://onlinelibrary.wiley.com/doi/10.1002/ana.22366/full)
I think there is enough of the 'new' to warrent a return to the MS specialist, your last brain MRI was in 2010 so its probably time for some new tests, visual testing, brain and spinal MRI's. I dont know if you are aware of this but its quite common for pwMS to have a relapse soon after giving birth. Temperature also temperarily affects pwMS too, so its a good idea to make sure you remain cool on hot weather days.
In MS its called a puedo relapse, its not a real one, your sx's return or worsen in the heat but as soon as you cool and rest they return back to your base line. Visual sx's such as you've described could indicate a condition called Optic Neuritis (ON) so getting your sight checked out would be a good idea.
I'm sorry for your situation but i am pleased that you've found your way to us, this is a great place to be for both information and support!
PS oh pwMS often have visual and comprehension issues, so reading large blocks of text can be difficult, could you please try to break up your future posts and i'm sure you'll get a lot more responses :o)
I don't know if one of your blood tests was for Lyme Disease or not, but it could certainly cause all your symptoms. It is believed to cause miscarriages, too. I had a lot of the same symptoms and I have a 5 (almost 6) year old, so I know how hard it is to feel so horrible and still try to care for a child (although you have 2, which is harder). This document was really helpful for me in comparing my own illness to the symptoms of Lyme.
There is a lot of controversy over Lyme Disease, with flawed testing being one of the issues. Too many people test false negative on standard testing, me included, and too many doctors think a negative test excludes Lyme, which it doesn't. There is a specialty lab called IGeneX that finds cases other labs miss. It is worth every penny to get a Western Blot done there.
You might first ask for copies of all your test results, and then look through them and see what was done. Sometimes people show signs of a Lyme infection, but don't rise to the standard of CDC "positive", a criteria that was developed for surveillance (statistical sampling) purposes, not as a diagnostic absolute.
You are welcome to also post on the Lyme Forum to hear others' perspectives.
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