Have you been diagnosed with MS or another autoimmune disorder?
In April 2015 I was diagnosed with Giant Cell Arteritis. I now also have Polymyalgia Rheumatica.
I have RA. and Raynaud’s.
I have eczema, but that’s it when it comes to autoimmune disorders.
In Jan2015 I was diagnosed with Polymyalgia Rhumatica. Now I’m told I have mild RA
Coeliac disease (aka celiac)
POTS (postural orthostatic tachycardia syndrome), which some researchers contend is autoimmune in origin
MCAS (mast cell activation syndrome), which is a different sort of derangement of the immune system
also, diabetes and hypercholesterolemia, which both appeared during a huge flare and may be autoimmune.
I have chronic muscle and joint pain, when it gets bad I have spasming and shaking so they were almost certain it was MS. They did both a head and cervical MRI. On the head MRI they found patches but not enough to consider it MS on the cervical MRI I had nothing. I still don’t know what’s wrong with me. They know it’s something autoimmune but that’s it and nobody wants to keep looking.
I began having neurological symptoms almost 5 years ago. I have chronic twitching, as well as joint and muscle pain. I’ve had visual and auditory disturbances in the past. But nothing on my brain mri. Only mild spinal stenosis in the neck mri.
I posted this question because it seems there are so many people that are plagued with symptoms of an “unknown” origin. They are diagnosed with fibromyalgia, or conversion disorder?! This has to stop. As an RN (in school to complete my APN) I recognized this behavior and found it repulsive. I was diagnosed with Fibromyalgia in 2009 and I didn’t argue with diagnosis. However, my issues became worse in 2013 and have been progressive and somewhat chronic. I aim to make a connection with genetic information and autoimmune diseases. I hope that I can help someone and that maybe someone can help me. I’ll post my History of symptoms as best as I can remember
So far the “doctors” have thought: MS, MG, LUPUS, rheumatoid arthritis, and Stiff person syndrome.
I have diagnosed with: IBS, Fibromyalgia, acute pancreatitis, gastroperesis, idiopathic vertigo, Degenerative Disc Disease (DDD), depression, SVT, Tachycardia, ect…
History of symptoms/Diagnosis/Procedures
Early part of 2000 (04-09?)
Vertigo (Once dx as sinusitis) PCP suggested the symptoms may be seizure vs vertigo
Cholecystectomy (performed in LR,AR)
Several female r/t procedures: CRYO, LEEP, LOOP,ETC…
Polypectomy- Dr. Williams
Vision went dark (can’t remember if unilateral or bilateral) progressively went back to normal within a week.
Tried to get up and go to the bathroom, and fell to the floor. (thought it was r/t DDD) unable to walk alone for about a week to week and a half
Disabling episode of “vertigo” spent 3-5 days in JRMC lasted about 2 weeks
Legs would get heavy and week
Woke up one morning in pain and very tired (PCP DX Fibromyalgia)
Cont’d having issues and lumped them in with fibro dx
Began having Intermittent issues with fine motor skills of R hand (Mentioned MS to PCP and he stated “I don’t think it is, but even if that’s what it is, there’s no cure”)
Returned from Europe OCT of 14 after 1 week
Palpitations and lightheadedness- difficulty breathing at times. Husband asked a few times if he should call Ambulance.
While at work, another nurse asked me to take a seat, she grabbed a W/C and took me to the ER. I was admitted with SVT and followed by Dr. Paydak
Attempted Cardiac Ablation Dec of 2014
Symptoms began to progress (I again r/t them to Fibro dx and working a fulltime and 2-part time jobs)
Became so fatigued almost ran over a large drop-off while driving
Episodes of paresthesia, blurred/ghosting vision, urinary urgency, cognitive issues, painful spasms, heavy dragging legs, balance, dizziness, stiffness, constipation, fatigue, tremor, etc…
Issues became bad enough that another visit to PCP was warranted (this time I was experiencing some during the visit) PCP immediately cautioned that we may be dealing with “MS” He asked me to use a cane and eventually a walker because of my gait and balance.
I lost the feeling in my R foot and while driving ran a stop sign (He asked me to not drive) Following this I rear ended another SUV it was very light, and no damage was caused
My blurred vision (not corrected by my glasses) caused many incidents with most damage being to the R side of my vehicle
Direct light was glaring (like looking at disco lights) at times
Episodes of tightness in chest and inability to lie down in the bed (slept in recliner) like a band was squishing me (work schedule made Dr. visit difficult) Was seen in E.R on two different occasions for what I thought was heart R/T issues, which were R/O
Dr. Griffin cardiologist at AR Heart Hosp- suggested a connective tissue disease, and after heart monitor results suggested the irregular rhythm was a symptom and not pathological. He stated, “This is more neurological, there’s a bad signal being sent, telling your heart to speed up”.
Rheumatologist- Dr. Alsebai confirmed Fibro, but wanted to R/O MS, Lupus, and RA. He also suggested using the cane.
Neurologist-Dr. Boop initially suspected MS, (My husband and I noticed an attitude change after my employer paid STD sent papers to his office) He then all but R/O MS after MRI results-He did mention Steroids but changed his mind and went on to agree with LP during the last visit
2ND Neuro- Ellana Russell, APN suspected MG/MS he placed me in the care of his APN She too R/O MS r/t the MRI stating “were looking for areas to light up like a Christmas tree” Needless to say I’d lost confidence in the ability of physicians
I began taking vitamins again, trying to exercise, seeing my psychiatrist regularly, ect…
These things did not get rid of the symptoms. However, I figured I could deal with them. New symptoms began to appear and prompted me to continue trying to get help.
I began to have increased tremors (making it difficult to eat or function), difficulty with balance, stiffness in legs and hands, hip/ankle giving out, weakness, numbness in foot/toes, tongue, face. Urinary incontinence (urinating in clothes), pins and needles or biting sensation around my torso as well as extremities, worsening cognitive issues, seeing words/numbers out of order, stuttering, and exhaustion.
These things would come and go, but the paresthesia, cognitive function, and urinary incontinence have become constant. There is also a light tremor that’s persistent. As well as the shooting, stabbing, shocking, burning, gnawing pains.
I’m currently back in school attempting to obtain my APN. I have noticed that stress, fatigue, and temperature extremes bring on an exacerbation of symptoms.
Ex: while at work, I assisted in a patient’s room that was hot, I felt tired but didn’t notice anything else, until my staff began asking “what’s wrong, are you okay?” One of my nurses stopped and asked me why I was walking “that way” and asked me to sit down… I then noticed my feet dragging. When I work without sleeping and become fatigued, Get overheated/get very cold, or very stressed, I notice an onset of symptoms.
Strange occurrences: Intense episodes of itching (left scratch marks on skin); petechial hemorrhaging in area of left upper chest; appearance of bruise of L inner arm
I have fasciculations in my thigh, legs, buttock, and arm at times, as well as spasms of the toes and fingers
I have periodic spasms in my side, that last for days (about 3 episodes)
I have periodic spasms/movements of lip, leg, arm or digit
I have tried to compile a list of things that have and are happening. I was keeping a diary, but it seemed no one was interested in taking the time to read it, even though I was “told” to keep it.
I have been having edema in my extremities. My legs and feet are the worse. my veins become large and are very visible when the swelling occurs. The swelling, stiffness,and pain are exacerbated by sitting or lying down.
Okay, I believe i have given you guys my freaking life story. LOL, and though there are things missing; I hope that this information helps someone!
So much of this could have been written by me! I was dx’d with Ehlers-Danlos Syndrome- Hypermobility Type 3 last year, after doing much of my own research and seeking out a rheumatologist in my area who even knew about EDS. I suspect I also have mast cell issues, and I have TMJ disorder that sometimes causes vertigo. I was dx’d with fibromyalgia in 2013 by a rheumatologist at the VA hospital in Little Rock, and not dx’d with anything else autoimmune due to my bloodwork coming back normal since my initial RF and ANA tests being elevated in 2013-2015. I have to find a new PCP soon due to my VA clinic moving so I will have to train a new team to try to figure out what sorts of things I’ve got going on with me.
I understand your frustration, I knew there was something wrong with me for more than 20 years but Dr’s kept telling me there was nothing wrong with me. I did finally get a diagnosis of MS when I was 43 years old but it was decided that my case was mild enough that it was just under the symptoms radar and that’s how it was overlooked for so many years. I was also diagnosed at the same time with a really bad case of fibromyalgia which is in the MS family.
I was diagnosed at the Mayo Clinic. While there I took their 3-day Fibromyalgia class. It was priceless in that it helped me understand what I needed to change in order to help myself get better. It took me just over a year to make the changes I needed to but I have definitely gotten better.
I recommend you check out Dr. Datis Kharrazian also know as Dr. K., he has written a book called Why isn’t my brain working. It’s an excellent book that helps you figure out what might actually be happening and give you healthy option to help yourself. He has online talks on YouTube and he does a lot of free summits online so sign up for his emails. Thanks to Dr K and the summits that he is involved with, I am a lot better than I was four years ago.
I also found an incredible local ANP who does 45 min appointments instead of the Dr 5 min appointments. She takes the time to listen to me and has helped me get healthier throughout the five years I have been seeing her.
I have been really fortunate to find several things that are working for me. Sadly it took a long time to get them all in place. I feel like I suffered for more than 20 years before I finally got old enough and started fighting for myself. Sadly so many Drs push us, women, aside and assume we are hypocondriacs because we try to keep a history of our labs and issues. My ANP was thankful that I had kept my history and showed me how my labs made her life easier.
Don’t give up and fight for yourself, Sonya
I feel your pain. I’m also in the medical field (a pharmacist), and it is very discouraging to realize how much we really do not understand about the human body. I began having neurological symptoms five days after the birth of my 3rd child. He will turn five in a few weeks, and I’m still no closer to answers. Many of the neuro symptoms that I had at the beginning have calmed down somewhat over the years, but I’m left with a constant full-body ache that is worse in my joints. I still have twitching every day that moves around my body. I look healthy on the surface, my labs are usually perfect, my MRIs unremarkable. I’m healthy as can be on paper, but in reality, I am miserable. Constantly. I was just shy of 30 years old when it all began. It’s just depressing…
Get test for the Jak2 mutation and the C-kit mutation. This doesn’t sound like fibromyalgia!
Have they tested you for Porphyria?
I sort of skimmed your lists but tachycardia, gastropsresis, severe constipation, twitching, neurological issues and weakness/paralysis all stood out. They’re all symptoms of porphyria(but also the symptoms of a million other diseases).
It’s petty rare and most doctors know absolutely nothing about it or refuse to test anyone for it because they’ve all been told in med school that they’ll never see a case of it. If you ask your dr to test you for it, don’t be shocked if they laugh at you or refuse to test you
These are the exact same symptoms as my daughters. Look to see if you have WFS1 genes or CIRS as it would be interesting to see what genes you and my daughter have in common
You appear to have a lot of knowledge about Porphyria. I have numerous SNP’s for it, but don’t understand enough about how to interpret them. I’m awaiting an appointment with a geneticist. My grandmother wrote in her bible that my family has genetic Porphyria. My symptoms match those you quote as well. Can we connect on here to share information?