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Avatar universal

confused and lost

Hi. I'm just taking a stab in the dark here, but I'm really confused about my health and don't know where to start looking for answers. Let me try to be as succinct as possible in the history, but it stretches back for years, so I'm not sure how I'll do.
At age 25 I began having numbness in one hand (dominant hand). I ignored it at first. Then I went to a chiropractor. I had pain in the neck and shoulders, but I'm a high stress person and have "always" had that. Doc diagnosed (with no x-rays) nerve entrapment and did adjustments. Not sure it really helped. Things seemed to get better on their own. At the time, I also had that thing where when you bend your neck forward you get tingles down your arms and back. I told the chiro. He said it was just nerve irritation. If I had had the internet back then, I would have known this could be a more serious sign and would have pursued it. It probably wouldn't have helped to start searching then, though, because the next bout of severe symptoms started when I was 32. I had lots of hand numbness off and on, but I ignored it. Sometimes the foot on the same side would be involved. At 32, the numbness turned to horrible nerve pain. It would come and go, but it was very sharp and awful in the outer two fingers of my hand. At this point I was also getting terrible headaches and my eyesight would kind of "vibrate" a little in the mornings when the headaches were coming. I saw a neurologist, who did MRI of neck and brain and an EMG and various blood tests. She found nothing (other than an incidental venous angioma), and diagnosed probable fibromyalgia and sent me to physical therapy. The EMG hurt like HELL by the way. She seemed to think that my muscle tension was just so extreme that it was interfering with that test and causing the pain. She diagnosed the headaches as tension headaches with a "migraine component." She also speculated the hand pain could have to do with postural habits and working at the computer, although it was not carpal tunnel. About the same time, I went to an eye doctor because my right eye (same side as all the problems thus far) was getting weak (tired at end of day, blurry). I got reading glasses. Physical therapy helped (mostly the bi-weekly massages!) and, eventually, the hand pain got to a manageable level. Well, I've always had lots of aches and pains, and now, at 39 after a pregnancy, I find myself having new symptoms again. I told the ObGyn that my legs were tingling now. He said the pregnancy could have damaged nerves. I've also had my lower back go "out" once since the birth. That has happened a couple of times in my life. I went to the chiropractor I had seen through the pregnancy. He says I'm a "mess," but that's not exactly a diagnosis. The part that is really concerning me now, though is the new tingling and now sometimes cramping in legs. My knee on one side is buckling with pain sometimes. My headaches are back. I have started an SSRI, and that seemed to make me tense my muscles (clinching the hand) more. I think it's a med side effect, but I can't be 100% sure. Also since starting the med, I had muscle twitches in my face and eyelid. We upped the dose of med and the eye spasms have stopped, but the muscle clenching continues, and now my hand is cramping and hurting. I can't grab things sometimes without pain under my thumb. I think it's like the muscles are cramping from all the clenching. Also random muscle spasms in my thighs. Tingling in legs is getting more pervasive. The tingling legs and return of the "migrainey" headaches predates the new med, by the way. But I guess I should stop the meds and see if it helps. The counselor I see doesn't want me off the meds. I started for postpartum issues that have improved. I was on a different SSRI to begin with, with same or worse side effects, so I think all will have this new effect. I had been on them before over the years, but never with any muscle effects other than teeth grinding, which I have done now for 20 years.
Sigh. So that's it. I've always suspected MS. I have cognitive difficulties, too, but it's hard to say that those aren't caused by anxiety, postpartum fatigue, a lifetime of poor sleep, etc.
I'm not in a good area for medical treatment anymore. If I'm going to search for answers, I need to know what to ask for.
Thanks for reading all this. I just don't know what to do. I tell myself that I may feel this rotten because of caring for an infant (lifting, bending, not sleeping, etc.), but the muscle spasms are scary. I fear the worst stuff (ALS, Parkinsons, Alzheimers, etc.), so that at this point a diagnosis of MS would almost be a relief. Perhaps it is fibromyalgia after all, but I just don't know if I believe that. It never did seem like a real diagnosis -- more like something the neuro said to satisfy me.
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Avatar universal
You are definitely at the right forum for support as you work through your issues.  I'm a limbo lander.  That means I have a lot of symptoms but no dx yet.  Everyone is welcome here.  Stay with us and lets us know how you are doing.  People can also help explain test results, etc.

Now, for the current problems.  Do you have a good primary care?  Or a good OB/GYN who will kind of function as a PCP?  Give a brief summary to that doctor.  One of the first tests is to have many blood tests.  That can make sure obvious things like vitamin levels, thyroid levels and other things are in sync.  Also, if you like your PCP, OB or Pediatrician then ask those doctors for referrals to other.  Even if your insurance doesn't require a referral, your doctors can tell you who is good.  Go ahead and ask them who they would see if they had MS or Parkinsons.  

My insurance doesn't require a referral so I didn't think to ask.  Once I did, the response from my other doctors when I tell them who my current neuro is, is fantastic.  All of my other doctors really believe in my neuro and there is a look of relief that crosses their faces when I tell them my neuros name.  So, always ask a doctor you trust for a referral/recommendation.

My primary care is also doing the slips for many of my MRIs.  She's working with me and my neuro in that respect.  However if you are in a rural area make sure you read the Health Page (top right) section on MRIs and other things.  Know the strength of the MRI before you make the appt.  Also ask for contrast and for MS Protocol to be written on the order.

Good luck.  Cheers, Jules
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Avatar universal
Thank you. I am grateful for the resource of this board, and I will look into the nerve pain medication. The previous tests were done in another state, and I'm not sure I can get my hands on those records now (I had some of them with me for a while, but we have moved many times since then). I'm not sure how I gave the impression that I'm in California, but I'm not. I'm in the rural South, so medical care is hard to find. I'll be driving 40 to 60 miles to the nearest larger city for any appointments with credible specialists. I'm kind of psyching myself up to start looking into all this again. I intend to wait, if I can, until baby is a few months older. In the meantime, though, I thought it might ease my anxiety a little to look ask around.
Helpful - 0
572651 tn?1530999357
Hi worried, what a good history you have constructed here. I agree with fluffycat that you should be looked at by a new neuro, and I'm sure there are MS neuros in your part of California who would do an excellent job of evaluating your symptoms.  If you go back on a nerve pain medicine, please be sure to read the Health Page here (upper right corner - yellow icon) on Nerve medication.  It is important to understand how they work so you don't give up too soon on them.  

I don't have much of a medical background about MS since I was just DX'd in Sept. 09, but know someone more knowledgeable will be along to give you more concrete advice.

My best, Lulu
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Avatar universal
Wow, we do sound similar. I worry about Parkinsons because of family history -- same with Alzheimers. That neuro I saw seven years ago prescribed neurontin (which I think is the older version of Lyrica) for the nerve pain. It helped, but there was breakthrough pain that nearly sent me through the roof, so I didn't keep it up. She also gave me "Duradrine" or something like that, for the headaches. It never seemed to help much.

Right now the "you're not just crazy" message is very helpful.
Thanks
Helpful - 0
683555 tn?1226763774
we are in the same boat my friend, but i have some positive tests that point to lupus and some to ms. my personal advice to you would to first stop seeing the chiro and save your dollars, and def find another neuro. perhaps see a rheumo too. like me, it could be ms, or it could be something like lupus. a lot of the time people are dx'ed with fibro because it is impossible to tell what autoimmune it is. you have many of the same symptoms as i have, and i have been through many many years of doctors and testing, ruling out everything under the sun moon and stars, all the while becoming somewhat of an expert researcher. you don't have als, parkinsons or alzhiemers. and you are not nuts (if you were perhaps wondering - as i have wondered about myself many times) you just need to switch up you doctors until you find ones that will keep testing and watching your progress and care enough to find out what's going on. sometimes they are not easy to find, but they do exist.

i would also look into getting an lp. that could shed a lot of light, and new mris in 6 months to compare to the last ones. keep a journal of your symptoms too. and i hope you find the right ssri that help with the anxiety. it took me a while to get a good balance for that. i am on zoloft and wellbutrin, but everyone is different. i do remember it took a couple of months of it being worse before it got better though. it could have been a side effect, or it could have been my anxiety about being on the medication. but now i feel a lot better.

for the nerve pain i am on neurontin and topamax, which also helps the migrains. lyrica is great but it made me too fat and it's really expensive.
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