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Orangee 05-11-2011 01:17 PM

Is it MS??? In Pain... Please help!!!
Hi! :wave: I am posting my bio for right here! I talk mostly about Lyme disease, but I want to hear from you too and get your 100% open and honest opinion as to whether or not you think it could be MS that I am experiencing????? Maybe my story sounds like yours???? Please take the time to read my story and write me back quickly even just to say, "Yes, it sounds like MS!" or "No, I don't think its MS!!" I know we are not doctors, but I feel that people who experience things know them better than those who read about them!!! ;) Thank you so so much!!!! :confused:

Hello everybuddy, I am new on here and am so thankful I found this support system! I am falling apart at the seems and I am afraid it is Lyme Disease! My memory is so bad, that I don't remember being bit or having a rash, but according to my Mom, she remembers me showing her a bullseye rash on my leg! I am a pet sitter and have been working with animals for 18 years now so I am outdoors all day and night in heavy brush and wooded areas, so if I was bit by a tick, it wouldn't surprise me at all! I have seen them on dogs a lot throughout my career!

To make a long story short, I started having related symptoms about 7 months ago! I first started noticing an ache in my elbow especially when I would bend it back and forth. I thought it was just tennis elbow from vacuuming a lot as I do not play tennis. I also started feeling dizzy and sick a lot. I started having numbness in my hands and feet off and on. I had double vision for a period, a staph infection which I doctored myself and a persistent cough and flu-like symptoms off and on! My large toenails on both feet turned black also for no good reason! One of them even fell off!

My first thought was arthritis and diabetes! I was tested for diabetes and my glucose is perfectly normal. Then I noticed my arm was getting worse. The pain traveled down my forearm and through my fingers and around my wrist! Then I started having awful pains here and there in my legs! These pains kept me up at night and would be very bothersome during the day! The numbness got worse... My whole arms and legs started to stay numb while I was sleeping and the dizziness persisted! It started to get really uncomfortable to even work! I was tired all the time and had to pull myself out of bed and whenever I wasn't working I had to lay down! Now granted, I used to be able to work from 6am till 9pm for days on end, I would go biking, roller blading, hiking, and walk miles a day, literally!

Today, I still have all of the symptoms but they are so bad that I can barely do my job let alone get up in the morning! The pain is in my right arm from my shoulder and down through my hand now, also its in my left elbow and wrist, my legs and especially my feet! My feet are so bad that sometimes I can hardly walk and I have to slowly shuffle my feet to get around! I can almost fall asleep standing and anything that takes energy is a huge feat including showers and getting dressed! I can hardly use my right arm now and I wake up all night long because of the pain! My vision is still bad and have to wear glasses! Just recently my left ear became plugged and I am constantly popping it so I can hear! I gained a lot of weight also during the last few months! Lately, I have been having night sweats and chills while sleeping.

My health started deteriorating so fast that I figured I better do some research myself because I have heard all of the horror stories of people getting misdiagnosed and undiagnosed by uncaring doctors and bad testing procedures! I don't want this to be me. So, I have been researching such disorders as Rheumatoid Arthritis, Fibromyalgia, Multiple Sclerosis and Lyme Disease for months now! I started to think more and more that it is Lyme disease! My brain is foggy and my memory is awful, especially my short term memory! I'm embarrassed to even talk to people because the words don't come out right and by the time they do, I forgot what words they were! And even talking takes to much energy! I have trouble holding a phone!

Some of my other symptoms that may or may not be related are hair loss, anxiety, tremors, shortness of breath, abnormal sleeping patterns that are getting worse, seizures, panic attacks, and I had a bad sore throat that lasted a few weeks, as well as a cough at one point that lasted some time also, both for no apparent reason! In addition, my facial twitches have gotten really bad, and recently I noticed a stretch mark-like rash on my tummy that has now disappeared! Sometimes I have heart palpitations also and recently had an EKG and it showed abnormal results.

I think I covered all of the strange things that have been going on with my health over the last 7 months to a year! I'm sure there are some symptoms that I forgot, but it also took me two days to write this little biography because of my fatigue so forgetting a few symptoms is the least of my worries right now!

I experienced severe anxiety this morning and got up before the birds got to sing! This is abnormal for me because usually I sleep in till the last minute before I have to drag myself out of bed and out the door! My heart racing and pounding, I couldn't stop thinking about what will happen to me if I can't work anymore or exercise and be active. At the rate that my muscle and joint pain is escalating, I won't be able to work at all in another month or so I figure! Thank you for any support, advice or help you can offer! :angel:

MSJayhawk 05-11-2011 02:41 PM

Re: Is it MS??? In Pain... Please help!!!
Have you been tested for Lyme?

If you suspect MS, have you seen a neurologist who specializes in MS?

The test for Lyme can be handled with getting your blood work tested for Lyme. If it is Lyme, the sooner you get treated, the fewer damages there will be.

Testing for MS will involve more extensive testing. You might have to wait for up to 6 months just to see the neurologist.

Do you have MS? maybe, but instead of asking here, get on the phone and get appointments made. The longer you wait the tougher it gets. I would hate to see you endure permanent damage from Lyme when it can easily be treated. :angel:

Orangee 05-11-2011 03:33 PM

Re: Is it MS??? In Pain... Please help!!!
Hi MSJayhawk! Thank you for taking the time to respond! I haven't been tested for Lyme yet! I ordered a testing kit from Igenex Labs and am saving up money to have the tests done properly (all inclusive is about $1100)! I could go to a local lab and pay $120, but I have read all over that it will most likely result in a false negative and they do 1/10 of the testing that needs to be done to get a proper diagnosis. I have already spent $250 on other blood tests! Then when I saw my MD, he said I have fake symptoms and was making everything up (no joke.. Those were his words. And when I asked him nicely if he was having a bad day, he said don't you try to analyze me!) so I am done with MD's who know nothing about these disorders! So my next plan of attack was to call infectious disease doctors and Lyme doctors! I found two, but they both require a positive lyme test AND a recommendation from my MD! I told them that my MD basically called me a liar and made me run out of his office in tears! So my next step needs to be to find a new MD but I am very scared to be called a liar again! Also, I could get the Lyme tests done soon when I have the $, but get this... I guess the MD felt so bad that he made me cry, he did give me a prescription for Doxycicline and a prescription for local lyme lab tests! I don't know.. Maybe the nurses who saw me in tears said something to him to make the situation better!??? Anyways, because I took the meds., I can't test for Lyme now for one to three months I have read all over the Internet! Oh the frustration! I will be out of work and homeless by then! That's why I got on here and posted my bio under four different disorders to get expert opinions from people like yourself who are actually living through these debilitating disorders! And you are right... It could be MS! I need to see a neurologist, you say? What tests do they do? An MRI? A catscan? I have no insurance which will inhibit me from getting these done now. Did you experience similar symptoms as me? I don't have a husband or boyfriend for emotional support! Mine left me a year ago when I started having seizures! So, I am thankful to get support on here! :) Does your pain move around to different body parts? Mine does. Today its my forearm and wrist that's the worst. Yesterday it was my elbow and shoulder! Also, I am very shy and have social anxiety! Could that be related to MS? I don't think so, but it doesn't hurt to ask! :)

MSJayhawk 05-11-2011 04:20 PM

Re: Is it MS??? In Pain... Please help!!!
You might check with your state regarding assistance in getting testing done.

While the Doxycycline will certainly handle the Lyme, afterward you should be able to have a determination for the requisite antibodies. If you are on the Doxycycline, use the money you are saving and start with a neurologist. Read about the tests performed by learning about the Revised McDonald Criteria. If it is known that your symptoms are neurological, then a CT would not be useful. If you do not know if it is definite for neurological problems, then a CT can quickly eliminate any non-neurological problems that manifest. The initial visit with the neurologist might simply be a test of balance, coordination, and reflexes.

As to "faking it", a neurologist can quickly sort out any of this. Many doctors not acquainted with MS may dismiss MS as being "in your head". Anxiety can be MS related or non-MS related. Your neuro might want to grasp a handle on your anxiety because it can mask MS or skew results.

You live in Florida and the heat can certainly hit MSers hard. You also mentioned seizures. MSers can go through seizures too. I went through a cycle of seizures that left me bedridden for a good six months. Record all your symptoms and work with a neuro on getting to the heart of the matter. The MS association or society might be able to assist you with grants for testing. :angel:

MSNik 05-11-2011 04:36 PM

Re: Is it MS??? In Pain... Please help!!!
Hi there. I am going to play devils advocate here. I do NOT think your symtoms sound like MS, nor do they scream of neurological in general. I do think you have several of the symtoms of Lyme disease...and much as I hope you take this in the spirit in which it is intended, I think you have some pretty significant anxiety going on.

I also know first hand what anxiety can do to a body, and yours may very well be reacting to this anxiety. Focusing on "all" these things you have mentioned made me alittle wired! :D However, none of them are life threatening and all of them can be treated symptomatically and I think you need to start there.

With your job and experience, Lyme cant be ruled out. I do think that having the Lyme test done by Igenex is a good idea, but I also think that seeing just about any Lyme literate MD, or infectious disease doctor, would be a smart thing to do. As Jayhawk stated, seeing a Neurologist who specializes in MS is not a bad idea- but once you make that appointment, you are going to be in for a ton of expensive tests...starting with blood work, and MRIs, followed by EMGs (if you are having that much pain) and probably some vision tests....if it were me, Id start with an infectious disease doc- these guys are usually very well versed in Lyme and are more apt to look at the entire picture, including the Neurological possiblity.

I hope you understand that i am not in any way suggesting that this is "all in your head" in a bad way, but I certainly think if you had some help dealing with what sounds like the anxiety- you might be better equipped to cope with this.

Hope you start to feel better soon!

Orangee 05-11-2011 05:12 PM

Re: Is it MS??? In Pain... Please help!!!
Hi MSJayhawk,

Thank you very much for your advice! I didn't think to look into state grants for testing and that could potentially help me so much! Also, I will look into and read more about the Revised McDonald Criteria! I will just stay patient, persistent, and continue my research! :) I was on the Doxycycline for only a week... 200mg. a day for seven days. It seemed to be helping some, but I may not have been on it long enough to see the whole picture.

From what you told me, it sounds like it wouldn't hurt to see a neurologist along with a Lyme Dr! At least if nothing else, they can rule out MS and/or Lyme! That will help at least!

Yes, living in Florida is hard on me especially because I have Hyperhidrosis and also because Dr.'s here seem to be very anxious to pass out pain meds. which only mask the main cause of one's disorder! One Dr. tried to give me Vicodin for seizures! :-o I'm glad you're not having seizures anymore! They are miserable and have lasting affects I know! I haven't had one since last October! *knock on wood* :) Thank you for your response! I appreciate it very much!

Orangee 05-11-2011 05:26 PM

Re: Is it MS??? In Pain... Please help!!!
Thanks again and have a great evening!!! ;)

Orangee 05-11-2011 06:48 PM

Re: Is it MS??? In Pain... Please help!!!
Hi Nikki,

I appreciate your honesty and bold approach to answering my post! LOL! I totally understand what you are trying to say! I actually agree with you, although all of the symptoms I have developed over the last 7 months or so actually are getting worse all the while my anxiety let up a lot and my panic attacks and seizures stopped and that's why I am not sure that they are all related. I still get anxiety every now and again, but it is not nearly as bad as it was in late 2009-early 2010!!! In fact, I have been really mentally relaxed until this morning. That was hell on earth for me last year and did result in lots of physical symptoms like hair loss and dizziness! But it didn't really affect my being able to walk or lift things. The pain I have now was non-existent when the anxiety was prevalent! But you have a good point and thank you for sharing! I swear, I don't know what is worse, mental pain or physical pain!!!?! Argh...

I'm sorry I made you feel anxious. It's probably because I felt that way when I finished writing my bio and you picked up on that! :( How are you managing your anxiety? I made some life changes myself. I stopped working as much and being a "yes" person and trying to do everything for everybody. Also, breathing and relaxing techniques helped too! Putting my head between my legs and breathing properly helped with my panic attacks. Eating healthy, exercising, etc. were all beneficial! :)

I hope you are feeling better this evening and thank you so much for your advice. I am going to see a new MD next so I can get my blood drawn for Igenex and get referred to an infectious disease Dr. that I found here where I live! And then I will go from there! Reading these posts has really helped! From what people have said, I doubt it's MS or RA! But I may still see a neurologist... Who knows? Maybe he can help me with my Hyperhidrosis because that is nerve related! :) Keep positive and have a wonderful evening!

MSNik 05-12-2011 04:38 AM

Re: Is it MS??? In Pain... Please help!!!
Glad you didnt get offended by what I wrote- it was sincerely meant to be helpful...

You asked how I manage my anxiety. To be honest, I dont allow it in my life. Im in grad school and I have a very demanding sales job working with Hospice patients...working with those patients, makes me grateful that all I have to deal with is a chronic condition, not a terminal illness! When things get out of control for me, and they sometimes do- I have been known to use Xanax to get thru a bad day or two; however I do not take it often.

I try to sleep enough, I force myself to be in bed by 10 pm most nights, allowing me at least 7 hours of good sleep. I definately try to eat right and Im very regular about my shots. I also try to exercise at least 5 days a week, I walk a mile on my treadmill and do my stretching exercises. Its not the "gym" days which I did 10 years ago, where I literally danced and aerobic'd myself into workout frenzy, but at least I am moving and shaking! Exercise does help...even when I dont want to do it, if I force myself I always feel mentally better!

Mostly I try to keep things in perspective....yes, pain is bad. and yes, there are days when I want to break down and cry. But, if I ignore them, and refuse to give into them, they pass. By taking control over the symtoms and the disease, I leave no time for it to control me.

Im glad you are going to see an Infectious Disease doc and have some blood work done. I wouldnt be surprised at all if you turn up with Lyme disease. Please keep us posted...and know we are here to vent to, and bounce things off of if you need us!

Feel well.

littlehutton 05-12-2011 04:41 PM

Re: Is it MS??? In Pain... Please help!!!

I personally think you should book an appointment with an LLMD asap, infectious disease doctors unfortunately know nothing about Lyme or how to treat it, please don't waste your time or money.

Iginex are definitely the best lab to use, but even they are not always 100% accurate. Lyme is diagnosed on a clinical basis, based on symptoms and history. Blood tests are used to support the diagnosis. With your possible bulleye rash and outdoor lifestyle I wouldn't be surprised if lyme was your culprit.

You also mentioned another type of rash which looked like stretch marks, this sounds like it could be a linear rash which is caused from Bartonella which is a co-infection of Lyme Disease.

Hope this helps some!
Good luck

littlehutton 05-12-2011 04:42 PM

Re: Is it MS??? In Pain... Please help!!!

I personally think you should book an appointment with an LLMD asap, infectious disease doctors unfortunately know nothing about Lyme or how to treat it, please don't waste your time or money.

Iginex are definitely the best lab to use, but even they are not always 100% accurate. Lyme is diagnosed on a clinical basis, based on symptoms and history. Blood tests are used to support the diagnosis. With your possible bulleye rash and outdoor lifestyle I wouldn't be surprised if lyme was your culprit.

You also mentioned another type of rash which looked like stretch marks, this sounds like it could be a linear rash which is caused by Bartonella which is a co-infection of Lyme Disease.

Hope this helps some!
Good luck

MSNik 05-12-2011 07:35 PM

Re: Is it MS??? In Pain... Please help!!!
Little hutton,
I have to disagree with you. First of all, Igenex is OWNED by a group of Infectious Disease Doctors....were you aware of that? This is the reason that they take very few insurances...and that they push for private pay. Yes, they are quite accurate in diagnosing Lyme; however they are infectious disease specialists..

Secondly, almost all Lyme Literate Doctors are Infectious Disease specialists. There is no Board Certification for Lyme Disease Specialists....either they are Infectious Disease Board Certified, or they are Internists with a fellowship in Infectious Diseases; However, to say that they "know nothing" is really not very accurate. If I were to go to anyone of the NY hospitals in my area to ask about Lyme, I would be referred to one of the largest groups in the NJ/NY area- all 75 docs are board certified infectious disease. Ive done my homework on this, and this is the norm!

It sounds like you had a bad experience. And for that Im sorry, but you shouldnt lump all doctors together. Just like Neurologists, there are good ones, so-so ones and GREAT ones! Honestly, there are very few bad doctors, but sometimes there are doctors with bad attitudes!

The advice which was given to Orangee was good advice. She should contact an ID doc, and she should also get the lab/ blood work done. There are hundreds of diseases which present like Lyme, and less people have Lyme disease then MS- also Lyme disease is hard to diagnose and like MS, many other things need to be ruled out. Unless Lyme is caught early with clear cut symtoms, like MS, patients can wait a long time to get an accurate dx which can lead to additional problems. The right treatment is important with Lyme, however if it is not caught in a reasonable amount of time, the right treatment is sometimes ineffective.


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