I feel like my drs have given up....ms?.

Britt89

New Member

Joined : May 2013

Posts : 2

Posted 5/13/2013 2:03 AM (GMT 0)

I'm new to this whole forum thread so bare with me. I am a 23 year old female single mom with horrible insurance and doctors who I feel like have given up on my diagnosis. In 2008 I gave birth to a beautiful happy healthy daughter. A few weeks or months after giving birth I noticed a huge change in my vision. I had lived my prior life (age 19 at the time) with 20/20 vision and no other serious health problems other than allergy induced asthma. Upon noticing my vision change I went to have my eyes checked and having Medicaid I had to go to a children's eye doctor. Upon my visit with the eye doctor he became very concerned with the condition of my optic nerve. As he explained it a healthy optic nerve should look like a donut large round circle and a medium smaller circle in the middle. The eye doctor explained my optic nerves (both eyes) were very swollen. It was hard to differentiate my "doughnut" as he called it. He referred me to a ophthalmologist. Dr.Palmer also noticed a difference in my optic nerves and suggested optic neurotice. After tracking my symptoms and optic nerves he ruled out this eye disease and started considering MS. Upon hearing this I was crushed. He explained he couldn't diagnosis me that I needed to see a neurologist. I was at this point sick of all the specialists and didn't go (I'm regretting this now)

I went back to my dr with chronic headaches. I told one of probably six doctors I've seen sense then that another doctor had suggested ms close to a year ago. The doctor became very worried and ordered me the works CT,MRI, spinal tap. I refused the spinal tap. The CT and MRI both came out clear so my doctors at that point let ms go. Even dropped the fight with me over refusing my spinal tap. A few years ago I believe I had a seizure only a small one and I never went to the doctor for it. Shortly after that I woke up one morning after heavily drinking and couldn't walk my toes and feet were completely numb. I went straight to the hospital while in the waiting room the right side of my face began to droop, twitch, itch and became numb as well. When the ER doctor finally saw me me ruled out stroke

(well duh) he did a short neuro test on me where he just stabbed my face with a safety pin

I also mentioned the possible suggestions made by two other health care professionals he shook his head and said "no I don't think this is ms I believe it's from your drinking binge and your body is severely dehydrated " ........?? Do he prescribed neuroritin for nerve pain. It helped greatly. I'm still not convinced that this was from my drinking I couldn't walk or feel my feet, toes, and the right side of my face. I also experienced needle like pains all over my body. Following this fun encounter maybe six months to a year later I started experiencing a lot of pain in both my shins. Went to the doctor again.....

they ordered a ultra sound in my legs. Once again everything was fine.... about six months after that I was diagnosed with hsv 1&2 not something I'm fond of or proud of. I have excepted the disease for what it is and haven't let it define me. My ex husband cheated on me and bam there you go. So more recently I've been experiencing horrible muscle tremors ( every where ) I've been walking and bam my legs give out or I feel like I'm in an elevator and the world almost just jumps(hard to explain) my vision has continually gotten worse mostly in my left eye the last almost 5 years sense having my daughter. I often have slurred speech as well. Then today everything has just gotten worse. My legs are numb I can't control my tremors and I'm being stabbed every where. I'm trying to hide it from my family but they know something's wrong I'm crying out in pain when the stabbing a get worse. My shin pain has never gone away. I can hardly walk a straight line or walk without my knees buckling. So if anyone reads this I'm sure they will just say go to the doctor. I fully plan on it tomorrow. I just would like to know if the people here with ms have experienced these symptoms. Thank you for reading and taking your time and considerations for a reply. Any help is appreciated!!!!!!

Ccbrunk

Regular Member

Joined : May 2013

Posts : 51

Posted 5/21/2013 4:46 PM (GMT 0)

Hi, Britt. I'm as new to this site as you are, but hopefully I can help a little, or at least let you know you're not alone here. I haven't been diagnosed with MS, but my neurologist says he is certain I have it, he just needs to see the "white spots" on an MRI. I was sent to a neuro-opthamologist a year ago to check my optic nerve. They said that if they found delineation of my optic nerve, it was a good sign of MS. They didn't see any problems with my optic nerve though. Still my neurologist is sure I have MS.

My neurologist tried to give me a lumbar puncture in his office, with local anesthetic, but he hit some nerves on the left side of my spine, I started getting excruciating pain in my left leg, and I was about to vomit. He stopped the lumbar puncture and sent me to a hospital. At the hospital I took something that made me fall asleep in the waiting room. They walked me to room where I laid face down on a table. They used imaging (X-ray?) to see exactly where to stick the needle, instead of guessing like my neurologist did. It still felt weird and uncomfortable, but it was SOOOOOO much better than what my neurologist did. The reason I share this is because I don't want you to avoid a lumbar puncture if your neurologist thinks it will help with the diagnosis, just make sure you do it in a hospital. Still, mine came back clear, but my doctor still thinks I have MS.

Before any of this started, I could count the number of headaches I had in my entire life on one hand. Not anymore. Have you been told you have migraines? My migraines have been a lot better the past couple months, but at their peak, I lost vision in my right eye and saw flashing shapes. My doctors called it migraines with aura. I also frequently have blurred vision. It is like I can't keep my eyes focused on what I'm trying to look at, and I have to make a conscious effort to focus.

I seem to have all the symptoms of MS, but lately my joint pain and ringing in my ears have been two of the most prevalent symptoms, along with the problem with physical activity or exposure to heat making EVERYTHING worse. My MRIs showed a cyst on my pineal gland, measured at 7mm a year ago, but all of my doctors said that was normal. Then, a month ago, the cyst was measured at 8mm. I didn't think much of a 1mm change because I thought picture clarity/resolution could be to blame. When I saw my neurologist a couple weeks ago he said the MRI scanners can measure down to the tenth of a millimeter, so a change of one full millimeter is cause for concern. He still thinks I have MS, and he wants to repeat MRIs every 6 months until the spots show up.

I've also been diagnosed with level 3 seizure activity. Seems as though I have absent seizures; it looks like I'm daydreaming but I come to and I have no idea what I was doing or how long I was out of it. That goes along with the numbness and tingling throughout my body.

I also have shin pain! A lot of times I wonder how all these things could be connected, but also how could so many different things go wrong at the same time? Are we THAT unlucky? My legs are constantly so weak that climbing stairs is difficult, and going down stairs is scary because I feel like I could collapse at any moment. My legs a so weak and shaky that I have problems standing from a sitting position.

I was scared, confused, and pretty much shocked when I heard the doctor say MS. I found out my wife works with someone that has MS, and they are fully functional and happy since they're on the right medications. They only miss a couple days a year when symptoms flare up. I know it's scary, but know that the sooner you get to the root of your problems, the sooner you can start getting better!

I hope you're finding answers, and I hope my experiences can give you some ideas to talk with your doctors about.

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