Hi! I'm new and unofficailly diagnosed

[dirtyflowergirl]

Hello, all, I'm new here.
I have an informal diagnosis of MS. I've seen so many docs in the past 8 years --well, 14 years really-- and today I'd like to pull my hair out and run naked through the street screaming. That is, if I had the energy to do so. I had some severe pain in my abdomen last night and today, and the electricity began shooting along my right side, literally from my toes to my head this morning. My doc who was on track to get me a formal diagnosis and some sort of treatment, well, she's no longer with us. So I've had to start all over again at a local clinic, and one doctor flat-out told me, "Someone put some ideas in your head, little lady." Then he told me I probably have gas. I bit back the curse words and the pummeling I wanted to give him. How is gas causing shooting pains in my face? I don't think so.

I can't seem to find a good neruo or MS specialist in my state & I'm about to lose my mind. It's so frustrating waiting to get some help, and that's all I've done: wait. I get passed from specialist to specialist, each one taking a few months to turn me around, scan something or other, and poke me with needles, and then they either say "I don't know" or send me to another specialist who takes another few months. It's been 14 years.

I'm actively looking for a new doc, and I fell upon this site. It's just nice to see that there's a community of people out there who understand the frustration I'm dealing with. The frustration alone is enough to send someone running through the streets, not to mention the strange bucket of symptoms that accompany an autoimmune disorder.

I'm embarking on a journey to better nutrition, and I've been researching that as well. I'm hoping to make some positive changes this year. I have an adorable little boy to care for. Maybe that's the worst part -- that he suffers as much as I do when I can't be up and about to play with him. I think he gets tired of playing in bed beside me while I contribute very little to the game. I'm really trying, though. I make sure to always smile and stay positive for him... until I have to have a meltdown, which I do privately, or on a public forum, apparently.

Thanks so much for listening. Sorry about the rant. Apparently I needed to let that out. Lol. Apologies.

Anyway, cheers to you all and the wonderfully informative community here. I am so sorry that we all are dealing with such aggravating health issues. Best of health and recovery to all!

[Nicole13]

Hey!
I totally understand what you are going through. Although, my journey has only been two years. My primary care doctor, that I started to see in September, has also unofficially diagnosed me. MS is the only explanation, the tests say so as well. I have 3 lesions and my spinal tap results said that "the IgG synthesis rate is indicative of Multiple Sclerosis." Yet, the neurologist that I have seen said its still challenging and is sending me to a specialist.

It is very frustrating, and very little people understand. They think no diagnosis is a good thing. But not when you are 22 and can't function like a 22 year old. Instead, you function like a 72 year old that can't drive at night and has to take meds to just get through the day.

So, I am very sorry that you have no one that is willing to fight for you and you have had to start at square one. That has to be so discouraging. I have a doctor fighting for me, and many doctors that have said MS is a likely future diagnosis. At that time, I only had one lesion. Well now I have two more and they are still hesitant to diagnose me. And I feel like running through the streets screaming as well, like pulling my hair out, like climbing into a hole and never coming back out.

Hang in there! And I hope you find a doctor that you can trust and that will fight for you like your other doctor did.

[sardi_g]

Hi and welcome! So glad you found this forum bc you are so understood here.

I was getting frustrated just reading what you're going through! I really feel for you. But it was heartening to read that you decided to figure out what *you* can do and that you plan to take action through diet. I used to think juicing and 'smoothing' were kind of flaky. I've learned a lot to say the least.

A lot of members here suggest you get the results from your blood tests regarding your vitamin levels. Get the numbers and compare them to what you research. Especially look at Vit D, B12, and magnesium I think.

I heard so many things and was dismissed by er docs, gp, family members in the medical profession. One doc responded to my numbness by suggesting I go volunteer somewhere. Uh yeah, if I want a personal life coach I'll look elsewhere thank you very much.

You know your symptoms are real and if the tests come back 'normal', that simply rules out what they were suspecting and now they can move on to other possibilities. That's often how the process goes. It does NOT undermine/discount your symptoms. I've seen/read about too many examples of 'negligence'. Perhaps too strong a word but nudge them if they need a nudge.

Stay strong. Drink lots of water. Simple but profoundly effective at times.

Lots of experience and a wealth of knowledge here. Don't hesitate to ask abt health concerns or suggestions as to what you can personally do. Most doctors don't help with those important choices anyway.

Thanks for sharing.
Sorry for the thesis. You should have seen the pre-edit version.
Wish you the best!

[Seasha]

Welcome to MSWorld, dirtyflowergirl! It's great that you reached out to us and I hope we can be of some help to you. I'm so sorry you've had a time of it while waiting for an answer. Some of us have had to wait for years also. I was in limbo for 10 years myself

Have you had other sx besides the electrical sensations? There are so many factors involved in getting a proper dx and also so many other conditions that mimic MS. It's great that you are starting on a healthier nutrition plan. Are you including supplements? You might wish to have your B12 and D3 levels checked as well - many of us here do.

Here is a link to put you in touch with your local MS society chapter. They should be able to help you find a MS Center or specialist in your area. http://www.nationalmssociety.org/fin...ter/index.aspx Give them a call soon!

Good luck to you and hope you see better days ahead. Let us know how the journey goes and come back often! And most of all, never apologize about ranting out your frustrations - we've all done it and totally understand!!

[dirtyflowergirl]

Thank you!

Thanks so much for your messages of support Nicole, Sardi, and Seasha. I'm usually a very positive person, but this week in particular has been very difficult. I so much appreciate having other people who understand.

As for other symptoms... how much time you got, Seasha? Lol. I'm currently having abdominal spasms from below my navel up to my ribs and on my back. Numbness and tingle in my hands and feet. Very little feeling in my calves, which stay super-tight and hard. My vision blurs randomly, and I feel pressure behind my eyes. I have electrical headaches, and shocks run though behind my eye and across my jaw. I have cane I have to walk with some days due to weakness and problems picking my foot up. I trip all the time, and I have the most horrible fatigue.

I am the queen of Brain Fog. (Yesterday I walked up to my house unable to find my keys to get inside. I had left them in the car & it was running ) I have tremors of the hands (worse on right), and it feels like the inside of my body is vibrating. The skin on my arms and back sometimes feels "burned" but it isn't. My tongue sometimes burns and feels "heavy," which affects my speech just a tad, and I get strange sensations in my head. Most of my problems are worse on the right side, but I still have problems on the left as well. There's even more symptoms which are strange and random and annoying. All this started as a diagnosis of fibromyalgia. Then after a few years it began to change.

I try really hard to keep myself informed and be proactive where I can be. I'm in a bit of denial, I think. I keep waiting for someone to "fix" me. I'm coming to realize that probably isn't going to happen. I'm going to have to learn how to deal with this and do my part to keep stress down, exercise appropriately, and eat well. I used to be a runner. Running was so helpful to my mental state, but now that I can't it's very frustrating. I'm doing a yoga-ish program that includes some cardio when I can.

Thanks again for the support, you guys. I hope you all are doing well.

[dirtyflowergirl]

Oh...

And I forgot to mention in my long-list I just posted that I have had an MRI about a year ago. 8 lesions, but "inconclusive" results.

[kcmd]

dirtyflowergirl, though I have only visited this site for a few days, let me tell you it is remarkable how many people are out there that feel like you do. I am one of them!!! I have to be honest I am so amazed at how difficult it is to get a real diagnosis for our symtpoms. I have not been struggling for as long as you have with these issues but it is so frustrating when you KNOW something is wrong with you and someone like a dr. tells you that you must be emotionally manifesting symtoms or you are depressed or things like that.

I work in the medical field and I struggle with being percieved as a fake! Every day I pray that I am not going to wake up with some new symptom to have to deal with that the tests are not going to be able to qualify as anything in particular. My best advice is to remain resolute in your truth. You know what is true and honest about your health. Don't let anyone undermine how you feel because if you do you risk undermining yourself and if I have learned anything through this is you have to be your own advocate!!!

[dirtyflowergirl]

KCMD, I'm so sorry you're suffering. I get so mad when a doc starts with, "Do you have stress?" Or "Maybe you need something for depression." Of course I have stress, I'm a human being! And just because I'm frustrated, disappointed, and tired does not make me depressed! Grrrr! Sometimes I get so mad I start laughing. Haha. I guess that calms me down too.

Hope you're able to find some answers soon!