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My story..... this is long, but wanted to share.

May 02, 2011 - 21 comments

My Story

This is my journey of my ongoing medical issues. I have always been an on the go kind of person, loved smiling and laughing and being around others. I was a social butterfly. I used to go see my regular doc, once a year for a check up and never had  a complaint.

When I was 17, I had come down with cat scratch fever. Never even heard of it except for the song. I had to undergo surgery to remove the lymph node behind my left ear.

Fast forward to around 22 yrs old. I was working at a day treatment facility for the mentally and physically challenged individuals.  I was reading a story to them aloud and suddenly my speech started to sound slurred and I felt as though it was a weak tongue, I called it my “Lazy Tongue”. This didn’t last too long and I let it go. I did not go to see a doc. because I was young and had no idea that it could have been serious.

Around  3 yrs later, it happened again.
I was talking on the phone with my sister and started to slur my words, my mouth muscles felt tight and I couldn’t get my words to sound right, I sounded drunk. Once again, it didn’t last long and I let it go again.

Around the same year, I had some neck stiffness that appeared while at a meeting at work. I was very stressed at the meeting and my neck started to hurt instantly. This lasted up to a month. Never knew what happened, just stiff neck and couldn’t work.

I was approx. 28 yrs. old  when I had my legs go “dead”. I was just getting into bed and ready to roll over to go to sleep, but my legs didn’t want to move. I could feel them, but to lift them was impossible to do. I had to physically lift them up with my hands. Once again, I ignored it and did not tell  my doctor about it.  

When I was 30, I became pregnant. Two months into my pregnancy I had a miscarriage. When I became  pregnant again, I had a lot of health issues begin. I was dx’d with Graves Disease two months into my pregnancy. I struggled with the symptoms of having a disease along with pregnancy issues.

After the birth of my child, I was doing well until the third month. I had stiffness in my right wrist that was extremely painful. I also had hip pain that made walking difficult.

Eight months later, my Graves Disease began to flare up again with constant shaky hands, heart palpitations, losing weight, hair, constantly overheated even in the dead of winter. I became very irritable and short fused. My Endocrinologist decided it was time to do something more to control my thyroid. He gave me 3 options, 1= pills that would make it difficult to have more children, 2= surgery or 3= RAI. (Radio Active Iodine).

I was about to get married that summer which was 4 months away from my decision. Of course, being the bride, you want to look your best, and surgery would have caused a scar, so I decided against surgery. I definitely wanted to have more children, so taking the pill was also out of the question. I decided to go with the RAI. It consisted of 3 days to go into the hospital, take a pill, go home. I had to do this for 3 days. After the 3 days, I could  not be around anyone for a week until the radiation left my body. I thought this was easy and harmless.

Two months later, my thyroid took a dangerous turn. I became so hypoactive I was pretty much dead. I literally could not talk,  slurred speech , very, very fatigued , my skin started to turn grey, I gained 16 lbs. in two weeks. I had no energy to do anything, I had weak muscles and could not walk quickly or get upstairs too easily. I was still a determined person and still went to work. On this particular day, my coworkers kept asking me if I was ok. I was told how my coloring was grey looking, and I knew something serious was wrong.

I called my Endo and I told the secretary that I felt like today was my last day on this earth ( that’s how sick I was) I asked to see my doctor and she said that there was not an opening until June ( this was April when I called). I immediately called my General Practitioner and she told me to get there right away.

When I got there ( which was in slow motion) barely able to drive, she saw me right away. She popped a synthroid in my mouth and told me to chew it up and swallow. I cried and asked her if I was going to die. She consoled me and then called my Endocrinologist and I could hear her speaking with him about how I was brushed off by the secretary and that I was in serious condition. I was sent to him right from her office to his which was right up the road. He also prescribed me Cytomel to speed up the hormone replacement pill to get me out of the danger zone of either coma, or death.
I started to feel much better and was able to have a perfect wedding. I was feeling like I had an angel watching over me to make sure everything went well.

One month after my wedding, I started to have problems with my eyes. They felt gritty, itchy, and watery. I noticed that I had really large bags under my eyes and that my right lid looked a little higher than the left. My Endocrinologist measured my eyes with a special instrument and immediately set me up with an Ophthalmologist.

My Ophthalmologist confirmed I had Thyroid Eye Disease. I was horrified. I was devastated and couldn’t believe what was happening to me. My life was just beginning. I had just gotten married, my son was 2 yrs old and I was at a job that I loved so much.

I went through a great deal of depression and insecurities. My eyes began to get larger and become more noticeable. I had a hard time being in windy and sunny conditions because my eyes were so sensitive.

I still fought this disgusting and horrible battle of a disease and went to work.  I had the maintenance workers take out some light bulbs out of the classroom that I worked in daily. I was wearing sunglasses to work to protect my eyes as well as cover up the changes that were taking place. One year after the Thyroid Eye Disease diagnosis, I underwent radiation to both eyes everyday for two weeks. I did this treatment during my lunch time so I did not have to take time off. I had to wear a special mask over my face and was bolted down to a table. The radiation beam was quick, but scary at the same time.

I started to lose my hair around the hairline and part of my eyebrows. I had to have this done to stop the growing of my eyes. I was very uncomfortable and my depression was getting worse. During this time, I was seeing an Eye surgeon that discussed surgery to settle the eyes back into place. The following year, I had my first surgery to my eyes.

I thought that I was only going to be out of work for 3 possibly 4 weeks. This first surgery was called Orbital Decompression.  The bones around the eye sockets were chipped away to make room for my eye balls to settle back in. If I did not have this surgery, I was in danger of losing my vision. After my surgery, I noticed that my right eye had some blurriness, and color changes along with dimness of light. I also had constant double vision so at this point, was not driving.

In January of 2008, I had gone to see my Optic Nerve Specialist. He examined my eyes and took pictures, and did multiple tests. I was diagnosed with having Ischemic Optic Neuropathy. I had no idea how serious this was. He told me absolutely no lifting anything over 40 pounds. I told him how my job requires to be able to lift up to 60 pounds and even asked him if he could change the amount on my back to work slip so I can return.

He put his hands on my shoulders and looked me dead in the eye and said, “ Do you value your vision?” I said, “yes”, he said “Absolutely NO LIFTING or you could go blind in your right eye!” I was scared, I cried, I was angry that I could not go back to work.

I had to go to my work to discuss with them that I am unable to return at the time, and that my Optic Nerve Specialist has my next appt. set for Dec. 2008 which was 11 months later.

My disability payments were soon to be done in March. I was going to lose my job of 16 years, my health insurance was about to end and I had no way out of this horrible mess that I was in. My health began to decline.

During the month of January 2008, I had my first attack of neurological problems that was noticed by  my family doctor.  I started to slur my speech, and I called my Endocrinologist because I assumed it was my thyroid. I was sent for blood work but my levels were in the normal range and my Endo. did not believe it was my thyroid that was causing me to have slurred speech to last for two weeks. I also had poor word recall, and short term memory loss.

My family doctor had sent me to a neurologist and then I was referred to a heart doctor. I underwent multiple tests, EEG, TEE, Carotid Doppler, MRI and more blood work. My MRI was clear, my EEG was abnormal and I also was told that I had mitral valve prolapse.

This neurologist, diagnosed me with having a TIA (mini stroke) I was immediately called and was told to start taking a prescription blood thinner. He also put me on another medication because my homocystine levels were elevated.

Devastation took over me. I was now dealing with worry about having a full blown stroke at the age of 36. I became very depressed and was put on a medication to help with this stress that I was going through.

March of 2008, I underwent my second eye surgery to correct the eyelid retraction. My eyelids were very high and did not close properly causing extreme dryness and constant tearing. I was in danger of having corneal ulcers due to this. Close to one month later, after having this surgery,  I became extremely lightheaded. I was very dizzy and had a hard time walking due to this. I began stumbling and feeling like the ground was sinking in while walking. I was still dealing with double vision and was going back and forth to the Eye muscle surgeon to discuss putting prisms in my glasses until my eye muscle surgery.

Over the summer months, which was 3 to 4 months after my surgery, I had a very strong pain come over my left shoulder, from my neck to my fingers. The pain was worse when lying down, which made sleeping very difficult. I thought I was having a heart attack and woke my husband screaming and crying in pain.

I had an MRI and -X-rays done of my neck, shoulder and back. I was also having severe pain in my hip which made walking very slowed and was very unsteady. MRI showed cervical disc bulges in c5 -6 area. X-rays showed scoliosis curved to the left and arthritis in the hips.

During this time, I was in the process of going for social security disability and had multiple doctor appts. and struggling with showing proof of my disability to my lawyer, which in my case, I had a ton, however, it was still a 2 yr. process.  
Sept. 08, Eye muscle surgery. Very painful, and practically was blind for a week. I had adjustable sutures, so after the initial surgery, and I was awoken, the surgeons put numbing drops in my eyes to adjust the sutures while I was awake. It was horrifying but I was brave to get through it. I needed constant assistance for all of my daily living, as I could not see. The pain I felt in my eyes was like needles and onions stabbing my eyes anytime I tried to open them. Once the healing started, I was still experiencing double vision. Little by little , each day, my double vision was occurring more looking to the sides rather than in front of me. I thought at this point, things were going to start to get better.

By January 2009, slurred speech struck again. This time it lasted for two weeks.  I was actually going to see my neurologist the very next day. I felt it coming on, so I didn’t call, I just went to my appt.  I was assessed by the Nurse Practitioner. Nothing was done. Here I thought , Oh my God, I am going to have a stroke, but they didn’t even send me to the hospital, nor did they take me serious. I said how dizzy I was for 8 months, and how I could feel the muscles in my face tighten up, especially my jaw, throat and tongue. I was sent home with the advice to drink more water. I was very frustrated and eventually decided it was time to get a different neurologist.

I had other issues arise that were neurological in nature throughout 2009 and 2010. I found a new neurologist and was sent through the ringer of tests all over again. Blood work to rule out other diseases, MRI of brain, cervical spine and lumbar. I had a repeated EEG and was diagnosed with simple partial seizures.

Because of this diagnosis, I had two other EEG’s scheduled  and both were abnormal. I was diagnosed with having hyperreflexia and anxiety disorder. I was not happy with the anxiety disorder diagnosis, because to me, this was not my real issue. Something else has been going on, and my neurologists are not putting the whole picture together.

Some of the symptoms I have had are slurred speech, optic nerve damage, double vision, nystagmus, hyperreflexia, tremor in left hand, instability, weakness of the legs, cold patch on left side of face, buzzing in left foot, twitching muscle in left thumb, and left shoulder blade, numbness above left knee, left hand itch for 3 yrs. Lightheadedness for 8 months, face pain that radiates deep into the ear which happened at different times but affected each ear. Pain that shocked me when bending my head forward. Constant back pain, muscle cramping in the same places, upper right thigh and upper shoulder blade /neck to middle of the back spasms.

Just recently I underwent my 4th surgery on my eyes. This surgery was to put an implant in both of my eyes, because they were sinking to far in and pointing downward. I was unable to see below me and had difficulty with steps, curbs, or uneven ground. I also had to undergo a sinus surgery to correct a deviated septum which was done at the same time of my orbital implants. I am still feeling the effects of that surgery, almost 3 months later. I am still having a hard time breathing, my right side of my nose is numb, and I wear an eye patch on my glasses all day just so I could see what I am doing.

I have a hard time with depth perception, and when I reach for something, I either overshoot or undershoot my target, as well as the tremor in my left hand becomes more pronounced with movement.

I thought at first, it was my Graves Disease, then I thought, maybe I had MS, but MRI’s are clear. I turned towards possible Lyme Disease, but once again, nothing.

I will soon go for an Evoked Potential, Visual Evoked Potential and EEG. Not sure if this will make a difference, but its worth a shot at figuring out what my health issues are coming from. I know anxiety and stress can cause a lot of problems, especially neurological, but I do not believe that this is my only problem.

I am at a stand still, not knowing is the hardest part, but I will remain strong and someday, I will know what this is that is happening to me.
I don’t know what else I could do.

Thanks to all that took the time to read this.
Pam


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Avatar universal
by drsdonthelp, May 03, 2011
OH YEAH, AND THE FATIGUE !!!!!! HOW COULD I FORGET THE FATIGUE , DID I MENTION FORGETFULLNESS!!

352007 tn?1372857881
by LisaJF, May 03, 2011
Pam,

I am completely in awestruck by the multitude of issues you have been dealing with for such a long time.  Thank you for sharing your story.  

I can't help to add that Im angry at the Nurse Practitioner who brushed you off and chalked it up to anxiety.   I'm angry at the Endocrinologist's office and their modus operandi.  What a place!!!

Pam, soon this will come to an end and you will get to the bottom of things.  I am so sorry for the trials and tribulations you have gone through and I wish I had known you back then so I could be of some support.

God bless you sweets!

Lisa

326184 tn?1348809108
by cantsleep2007, May 03, 2011
Pam,  I read your entire post and it gave me mixed emotions to say the least.  I have experienced almost every one of your symptoms and have been diagnosed as recently as Feb 2011 for some. I am so very sorry to hear of your miscarriage I cannot imagine the pain that caused for you honey.. My heart goes out to you :) .  I have talked to you on here when I first joined and have had multiple testing myself, seems to never end. I just had the lyme disease test and of course negative. I know that you will understand when I say I just hoped that was what I had. At least it could be treated, maybe even help stop the progression of my loss of life. I think you have read some of my journals and some of them were written on very bad days.  I feel every pain you feel and have been dealing with the same issues as you for many years now. I was diagnosed with graves thyroid disease in 2003 and had radiation iodine treatment. This stopped the aggressive weight loss but did not correct the thyroid issues at all. I now fluctuate between hypo/hyper thyroid.. or as my endo says now.. its good we can at least stay in a wide range ballpark. I have been on levothyroxine of levels between 175 mcgs to 100 mcgs. I have a bottle of each in between and blood work usually every three to four weeks depending on what I am feeling. Exhaustion is major, hair loss for several years now.

To sum this up, I now know of new tests that you have mentioned that I want to have and continue to hope for answers and help.  I have unfortunately deteriated to the point that my two youngest boys now live with their father and step mother because I am unable to drive most days and sometimes have difficulty just carrying on a conversation where I dont stumble for wordss or just cannot remember or make the words I do want to say just come out. I think you are so very strong!! The life we are living just seems to take take take.. I will think of you often and relate to everything you have said. I hope the best for you and for all of the famliy and friends that help you through each and every day.  Take care   Terrie

Avatar universal
by drsdonthelp, May 03, 2011
Thank you both so much. It felt good to get my story out, yet, it does tear me up. I definately  try to hold my head up and keep positive eventhough I have been through torture.

Crying is something I do best, except when I have people that love me and are there for me, It makes me smile!! :)

Big HUGS!! Pam

1493284 tn?1294875712
by sadie405, May 03, 2011
Pam,
I saw this on the sider by chance and clicked to read.  I am just so sorry you're going through all this, and I really appreciate the fact that you hang in there--- you can tell by how responsive you are on the boards. Stay spunky. Stay active. Stay assertive. Don't let them take that from you. USE it. REFUSE to be treated as lesser, or "written off" as anxious. Clearly your system is fighting a few things, and you deserve  a Dr. House, someone who wants to help you solve the mystery.

Best,
Sadie

Avatar universal
by drsdonthelp, May 04, 2011
Sadie, Thank you. I wish we had Dr. House, and many times I thought about contacting mystery diagnosis, but I think I need to have the right diagnosis first.

You are so right about staying spunky, and assertive, and I do get so angry at the medical practice when they do write me off as being anxious.

I stay as positive as I can be, My children are my life and no matter how I feel for the day, I get through it all for them. If it weren't for my children, I don't know how I would've gotten through all of this, my body probably would've given up on me.

Hugs,
Pam

Avatar universal
by drsdonthelp, May 16, 2011
Just adding the latest testing results I had done in Rochester, NY. EEG and VEP were both abnormal. BEAR and SSEP were both normal. VEP impression stated, something like P100 absolute prolongation latency consistent with demyelinating process.  EEG states seizures  are consistent with epilepsy.

When DR.. called,, he said nothing about what was written on the report, but he said it might be central sensitization.
("Another one bites the dust") in my singing voice. lol



Avatar universal
by Weffette, May 24, 2011
Lyme disease testing...there are several components to it, but most labs only test a couple and if those are negative...they discount Lyme as being a culprit. request another lab done...using ALL of the components of the testing!
I, too, have multiple health problems, different from those mentioned, but many. And the medical pro's (if I can call them that) brush me off, say I worry too much and I even had one Nurse Practioner tell me, "You are just like the 100's of other patients I see."  I wanted to SCREAM at her...I am not like anyone else, I am me, with my own thoughts, my own feelings, my own DNA, my own blood, my own health concerns!  I bit my tongue and NEVER went to that office again.
It angers me when so-called doctors think they know OUR BODIES better than we do!  It is VITAL that WE be vigilant in being our own medical advocates! Speak loud and roar if you must...BE HEARD!

1734735 tn?1413778071
by tingletingle, Jul 22, 2011
Pam,
My heart is so heavy reading your incredible story. And despite the ups and numerous downs you still sound so positive, brave, and courageous. I always admired great sports people, various business leaders and even a few politician but MS has totally changed my perspective. Pam I admire you for coping with such amazing suffering while raising children and trying to make the most out of your life. God bless you.

Alex

Avatar universal
by drsdonthelp, Jul 22, 2011
Weffette-  I can't agree more!! These Drs. are supposed to be helping us, and all they do is create more problems. They say we are anxious or depressed, but if they did their job, we wouldn't be so distraught over the whole diagnosing process. These drs. do not know our bodies and what we know are normal / abnormal. I try to speak loud and roar when needed, but I'm sure you know, they frown on the fact that we know so much, SAD, BUT SO TRUE! LOL
Thank you for understanding,, and I hope for your sake you find a doc. that can help you too:))
Take Care,
Pam

Avatar universal
by drsdonthelp, Jul 22, 2011
Alex - Thank you for such beautiful kind words. I cry ALOT, and then when someone like you, and others that don't even really know me can make me smile, IT MEANS ALOT.
I have my bad days when all I want to do is put myself in a room , cry, sit in silence, and do absolutely nothing,, but with kids, that is nearly impossible, and I have to brush myself off and move on...... It's hard, but I have always made it a point to say everyday,, It could be worse. I am still alive, my kids are healthy, and if the Lord is trying to rattle my tree alittle to see how much I can take, I will take it as long as he doesn't take me yet! LOL

God Bless you as well,
Pam :))

867582 tn?1311627397
by MsWobbles, Jul 25, 2011
Dear Drsdonthelp,

You said you "turned toward possible Lyme disease, but, once again, nothing."  I ask you:  Did you go to a "Lyme-literate doctor"?  Or did you just have Lyme lab tests done?  Or did you,heaven forbid, make the mistake of consulting an infectious disease doctor (they block Lyme diagnosis).  I too was "turned toward Lyme a few years ago" but had that ruled out by negative Lyme lab tests and an infectious disease doctor's idiotic pronouncement that I couldn't have Lyme "because Lyme is not a chronic disease."  What a jerk!!  That lie cost me years of treatment because it turns out I do have Lyme disease after all.  If your possible Lyme disease was ruled out just by the Lyme lab tests, whether the standard or IgenIX,  or by just a regular doctor, I suggest you consult a "Lyme-literate" doctor ASAP.  A Senate investigation in 2002 confirmed the inadequacies of our current Lyme lab tests - yet they are still being used as the final word in Lyme diagnosis by uninformed doctors (i.e.most doctors).   Even IgenIX tests can be all negative and you can still have Lyme!!  Only the Lyme-literate doctor can evaluate you properly for Lyme.  Find one by contacting your local Lyme support group or by contacting ILADS or the Lyme Disease Association for a referral.  It really is life or death for you to pin down Lyme if you have it.  Good luck and be strong about this!!

From deep in the Lyme pit,

WAF

Avatar universal
by drsdonthelp, Jul 25, 2011
WAF,
Hi and Thankyou!!!!  This whole process is beating the c r a p outta me!! These past two weeks have been horribly painful for me. Last week, I dealt with left eye pain that radiated to the back of my head. This week it is the right eye with pain in the back base of my head. I spent the day today going from my opthalmologist to my general practitioner.

Thank God that I have no new inflammation on my optic nerves, just the pale optic disc from 3 1/2 yrs ago. I believe that it is sinus related. I just had sinus surgery along with orbital implants to my eyes in Feb. This pain is sooooo unbearable. My doc. put me on an antibiotic to help treat it, but if it doesn't fix the problem, then I have to go for a Cat Scan to see if the implant is blocking or trapping a nerve (because my right side of my nose is still numb) and I have not had any kind of relief since the surgery.

I cried alot today in front of a  room full of patients in the waiting room. I had strangers bringing me tissues and wishing me well, but it's still so hard and sometimes even when I try to be strong, I am at my weakest!

I asked my general practitioner to get me into a new neuro. because the one I have now is not sympathetic to my health.

I really started to believe that all of my problems could be due to lyme disease, but since the last test that I had done, I checked it off the diagnosing list. I have alot of trust in my general doc. and I believed her when she says its not lyme. But again, like you said, some of these tests don't show all the proof. I have read that lyme can cause chronic sinusitis, I don't know where, or who said it, but I have/had chronic sinusitis.

How in the world do I go about this??? No one listens, and I suffer. I am so sick and tired of suffering. I am so sick of being sick, I am so sick of people telling me but you look good, its probably nothing.  I had someone tell me today that her cousin was going through what I have been going through, and all it was, was her birth control.  I asked her, did she have slurred speech for two weeks, did she have nystagmus, did she have vertigo for 8 months, did she have abnormal VEP tests and optic nerve damage. ....... ??????? ...... answer..... well, no.  .... there is no comparison, and I am not on birth control.  (sigh)

I am soooooo sorry that I went off the subject at hand, I am just so disappointed in the healthcare system and I just need answers, not the brush off.  

I will take any information about lyme as I can. I feel like eventhough my MRI's are not showing much, I did not brush MS off the list, and eventhough the lyme test is negative, I still will keep that on the table as well.

I will be in touch with you, and we can pm eachother. I would greatly appreciate it.

Again I am sorry for my rant, I should've saved it for a new journal instead of plopping it all on you :)
Big Hugs,
Pam

1773941 tn?1331676759
by Nicoal, Aug 29, 2011
Hi Pam,
I just want to say that I finally got to read more of your profile (the kids actually left me alone for 15 minutes:)  I can't believe that you have to go through all of this without any doctors having some kind of clue.

But, what REALLY impressed me is your positive outlook!!! Before this, I only knew you from our posts and I didn't know that you are going through hell.  You are still funny, and happy and POSITIVE!  You are a huge inspiration, and I'm so glad we get to chat every now and then:)

I wish you all the best, you deserve it!!!
Nicoal



Avatar universal
by drsdonthelp, Aug 31, 2011
Awwww,,, Nicoal, Thank you! That really means alot to me. I feel so blessed to have this place to come to, it is my safe haven!

I hate to be sick, have problems, and diseases! I say to people that I know personally, can you believe this is what has happened in my life? This is not me, I am not supposed to have these problems, I love life, I love to have fun and socialize, but since all of this cr ap has happened, I keep to myself, I cannot just get in my car and go somewhere, because I am limited to how far I drive due to safety reasons.  I am embarrassed and am afraid of running into someone that I haven't seen in a while, and them saying OMG, what happened to Pam?  ( I am not a vain person, but I am a woman, and we worry about these things)

I miss my job, but I am now on SSD, and, I have to keep fighting to just to have it ( as if I don't have enough stress in my lovely life) LOL

I appreciate it so much when people can see past the visual and hear my words instead!

Thank you and good luck to you as well,
Pam




1760800 tn?1406753451
by Jacksmom516, Sep 02, 2011
Pam

Just read your story and All I can say is Wow - you have kept such a positive outlook on everything - I draw inspiration from you when I just want to give up -  Sometimes it is so hard just to get out of bed but I do - just to keep on!  I am as of yet diagnosed and like you had some sx over the years and always attributed them to "OTHER" things -  Just starting this process of finding out what is wrong with me and get treatment.  I too have thyroid disease and the tired heavy leg and balance problems - They are starting with the MRI's and I am pushing the Lymes testing too -  
I know what you mean about crying just to cry and Dr's just not listening.  And I truly know what you mean bout being tired of being sick and tired of being just plain tired!  

When I get down I will remember your post and your positive take on life. Know you are not alone out there!  

My thoughts are with you -
Tracy  




Avatar universal
by drsdonthelp, Sep 02, 2011
Tracy,

I can't tell you how much it means to me when I can help others just by sharing my story. I hope you find your answers alot quicker and easier than what I have been through. From all of the advice I have gotten from being here on this forum, it is to be persistent and never give up!! I am a fighter, and I will get my answers. The sad thing is, we don't ask to be sick or have disabilities, and yet alot of these doc.s tend to make you feel worse after you leave their office.

I was absolutely , possitively sure that I had MS, but since being here, and checking out the lyme disease forum, I am going back and forth now.  I know that it is one of those, because ANXIETY  just isn't cutting it anymore.

I stopped by my former workplace today to celebrate one of my students birthday, and I felt like I was home. I was welcomed with open arms. I shed tears with pretty much everyone that came in the room to see me. It was such a great feeling.
I miss my job sooo sooo much. It was what I was meant to do, and now I can't.

My kids saw me cry today, and I hate to do that in front of them, but every now and then I break down. I actually break down alot, but its usually behind close doors. If I go out in public, I do my best to put my makeup on (shaky left hand and double vision) fix my hair the best I can and wear nice clothes. To others, they may not notice the thick prism in my glasses, or the one eye looking downward. They can't see the pain I am in, or how disoriented I feel in large spaces. All I can do is put a smile on my face and get interested in what is going on, or I may as well be dead. There is too much to live for, and I am going to keep on living.

Please don't hesitate to pm me. I like to talk and if you need for me to listen, I am pretty good at that too. :) LOL

Take Care,
Pam

Avatar universal
by denzel_1980, Sep 03, 2011
Dear Pam:
I have been experiencing different types and levels of neurological symptoms for a while, such as weak, fatigue, pain, headaceh etc.  I am actually going to see my neuro next Wednesday for my spinal cord MRI. I have no idea what the result will be and what the neuro can do with it.

I am very touched by your story but also impressed by your strong characteristics. I am male of 33, but I tell you that I cry a lot this two month.

I will keep you in my prayer. I am reading your other stories now.

Blessing,
Denzel

Avatar universal
by drsdonthelp, Sep 03, 2011
Denzel,
I wish you alot of luck with your tests. If you need to cry, make it a good one! Sometimes that's what we need to do in order to let it all out at once and then you feel like you can conquer whatever comes your way.

I truly believe my kids are why I stay so strong. If I am crying  and they ask, mom why are you crying, I tell them, I 'm not crying, I have something in my eye,,

Today, I had my neices birthday party to go to. One of my friends was asking me how I have been doing, I say, good, I am doing good, but she knew.... She asked me how I do it. I said, do what? , and she said, you stay so positive, you try so hard to do what you can, and I know you have been struggling, how do you do it? And I told her CELEXA!!! ( It's my antidepressant) Well,, we started to laugh and laugh, and she said to me, You are awesome! She made me feel so good. And that's how I keep my head up.

If you ever want to chat, you can pm me. I will be hear to listen. Please take care, and thank you, I feel blessed to have touched so many people with my story.

Pam :)

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by Jacksmom516, Sep 06, 2011
Pam

Hi - as I am yet un diagnosed - I too fluctuate between MS and Lymes in my thought process - My walking and balance have deterorated so fast that unless I have some super active type of MS - which knowing my luck is probably what it is - there is something else going on here -  6 years ago I could walk for miles - even 4 years ago still not so bad  - today - have to have a cane or a shopping cart to lean on - for past 6 years Drs been saying foot and leg injury after 4 ortho's finally one said maybe neuro in nature so that is where I am waiting for Ins co to approve MRi's with contrast.  Also have Thyroid disease on top of all this so can't be active - feet don't work and gain weight at the drop of a hat cause of thyroid - oy!  

Anyway we gotta do what we can!  Have a great day!  Take care too!

Tracy

Avatar universal
by drsdonthelp, Nov 07, 2011
Cheers to the final answer to this long drawn out story...... First visit with a LLMD on Oct. 7, 2011, started on Doxy for 30 days. Good results were, Left hand tremor is starting to ease up,,, Bad results, I had quite of few "herxes". This trial run of being on an antibiotic is what "hit the nail on the head". Second visit with LLMD on November 4, 2011, I was given a most likely "Clinical Diagnosis" of Lyme Disease and two coinfections, Babesia and Bartonella. I am now taking a higher dose of zithromax (can't remember mg) and Flagyl (dose ?) 3 x's day ,,, both for 30 days...

To all that have checked in with me and have been there for me thank you.. Also, to all or any of you still looking for some kind of answer,,,,,, ya never know, it could be Lyme Disease,,, Keep an open mind and do your research, its so worth getting the right doctor, one who you trust, and most importantly ...one who will LISTEN AND IS WILLING TO HELP!!!!!!



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