I'm I experienceing symptoms of MS?

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pink blobs
Regular Member


Date Joined Jan 2011
Total Posts : 54
   Posted 4/7/2011 10:03 PM (GMT -6)   
Hi, I'm a 26 year old female having strange symptoms. I have been diagnosed as having an autoimmune disease, but my doctors are trying to figure out what one I have. Over last summer I noticed I would get attacks that were somewhat like panic attacks but were not. I would wave dizziness, blurry vision/tunnel vision, scotomas, visual snow/zigzag lines, myoclonic tremors in my arms/legs/back, numbness in my extremities, increased heart rate, nausea, I would feel as though I was becoming unable to breathe on my own or get proper breaths, and feel like I was going to black out, go blind or start convulsing. They would come on from taking medicines and drinking and last anywhere from 5 minutes to a few hours. After these symptoms began I started having urinary and bowel dysfunction. I kept thinking I was getting UTIs, but I would get tested and my doctor couldn't find any bacteria. I started getting nausea, vomiting or dry heaves everyday in the morning. I got CT scans, blood work, liver tests, you name it, I had it, but they could not find anything. After all this I started getting a red face everyday, that would get really bright at times and last anywhere from hours to days. I would also get short of breath, especially when walking up stairs. The myoclonic jerks kept getting worse, and I would develop episodes where I would make involuntary sighs or noises. My doctor ordered an EEG, but it came back normal, even though I was having myoclonus during it.

Then over winter I developed new symptoms. I would start feeling coldness, numbness and tingling in my hands, face, chest arms and legs. Sometimes I feel like cold water is running down the back of my leg. My circulation started feeling poor. I also noticed my hands, knees and feet were turning bright red. My toes were turning purple and my fingers would turn red and white in response to cold temperature. My doctor and I think it's Raynaud's Phenomenon. But it doesn't end there, now I'm starting to get purple patches on my legs, I can see my major arteries in my arms and legs. My skin has a veiny appearance. I think it's livedo reticularis. Then a few weeks ago after having bad chest pain, my doctors found a granuloma in my lung and that my lymph nodes were abnormally large. My GP thinks it's sarcoidosis, but when I saw a pulmonologist he thought it wasn't. He did a bronchoscophy on my lung last week, and I'm waiting on the results. My GP thinks its a fungal infection from an autoimmune disease, she also thinks I have ankylosing spondylitis, as she saw some inflammation in my spine. I've noticed I have been having pain in my spine and limited modion, as it's harder for me to look side to side. I also get zapping sensations in my spine as well. My GP also found that I had a vitamin D deficiency.

I had tests for Lupus, but they came back negative. I saw a Rheumatologist who thought I had a neurological disorder. I saw another one who thinks I have an autoimmune disease, but cannot say what one. The same goes for my GP. My pulmonoligst doesn't know what to think at all. I think I have an autoimmune disease but I'm convinced it's either Lupus or MS. My mom has epilepsy and she once told me that somewhere in my family, someone had MS. I really don't know what to think at this point. I guess my next step is to beg for an MRI. Do my symptoms sound like MS?

FishMike
New Member


Date Joined Mar 2010
Total Posts : 7
   Posted 4/9/2011 9:51 AM (GMT -6)   
Hey Pink

That sounds like you are dealing with a lot of issues, many that you mention are common MS symptoms although you must always bear in mind that all MSers are very very different. That is one of the things that's makes MS and auto immune so hard to diagnose.
I am a 17 year Mser and an auto immune patient and much of what you describe is similar in nature to my condition. MRI's were no use to me as it took a spinal tap to finally diagnose me after 7 years trying to figure out what was happening.
Sometimes a MS patient comes along who is not the typical Mser, that would be me! even knowing MS exist now has not changed the fact I continue to get all sorts of nasty auto immune diseases. At first the docs tried to attribute it all to MS but after awhile it appeared obvious it was auto immune and that MS was only part of a larger picture.
Like you I struggle to understand what being "auto immune" actually means and my docs do also. They really can't figure out who to send me to anymore! or what to do other than make me comfortable.
My advice to you is do a lot of research and learn to be your own "patient advocate". Don't allow the docs to give up looking because there is an answer out there somewhere. Best of luck!!! FishMike.

twingirl
Regular Member


Date Joined Feb 2007
Total Posts : 323
   Posted 4/9/2011 12:23 PM (GMT -6)   
I'm sorry you are having such strange symptoms.

Did any of your doctors do a lyme western blot? Do you remember ever having a tick bite? Lyme disease is a very strange and hard to diagnose illness and some of your symptoms are like some that my friend experienced when she had lyme disease.

Have you been to a neurologist who specializes in MS? If you did that I'll bet you would get an MRI and some other testing done.

Good luck with this. I feel bad for both of you that you are suffering with this at such a young age.

pink blobs
Regular Member


Date Joined Jan 2011
Total Posts : 54
   Posted 4/10/2011 6:37 AM (GMT -6)   
FishMike said...
Hey Pink

That sounds like you are dealing with a lot of issues, many that you mention are common MS symptoms although you must always bear in mind that all MSers are very very different. That is one of the things that's makes MS and auto immune so hard to diagnose.
I am a 17 year Mser and an auto immune patient and much of what you describe is similar in nature to my condition. MRI's were no use to me as it took a spinal tap to finally diagnose me after 7 years trying to figure out what was happening.
Sometimes a MS patient comes along who is not the typical Mser, that would be me! even knowing MS exist now has not changed the fact I continue to get all sorts of nasty auto immune diseases. At first the docs tried to attribute it all to MS but after awhile it appeared obvious it was auto immune and that MS was only part of a larger picture.
Like you I struggle to understand what being "auto immune" actually means and my docs do also. They really can't figure out who to send me to anymore! or what to do other than make me comfortable.
My advice to you is do a lot of research and learn to be your own "patient advocate". Don't allow the docs to give up looking because there is an answer out there somewhere. Best of luck!!! FishMike.


Thanks for the thoughtful response. It sounds like you've been through a lot too. A spinal tap sounds awful. What was it like, if I may ask?

I have been very concerned I might have MS, as neurological diseases run in my family, and I once heard my mother say that it might run in my family, but I'm too afraid to ask her because she does like to talk about things like that. I'm also pretty sure I don't have epilepsy, my mother does, but I have never had a grand mal seizure and my symptoms are too strange, as I have joint pain, chest granulomas and bizarre rashes. I've heard of connective tissue diseases being diagnosed in MS patients. My positive vitamin D deficiency test struck me as one of my most interesting results out of the tests I've had so far. Rickets(vitamin d deficiency) seems to be very common in MS out of all the autoimmune diseases. I'm very interested in what you said about your MS being part of a bigger autoimmune problem. It seems that autoimmune diseases are co-morbid with the other ones, as many people report having more than just one condition. I almost feel as though diseases like Lupus or MS are just part of a larger problem, just as MS is for you, that autoimmune diseases are just different manifestations of having a problem with your immune system, which is the true issue.

pink blobs
Regular Member


Date Joined Jan 2011
Total Posts : 54
   Posted 4/10/2011 6:42 AM (GMT -6)   
twingirl said...
I'm sorry you are having such strange symptoms.

Did any of your doctors do a lyme western blot? Do you remember ever having a tick bite? Lyme disease is a very strange and hard to diagnose illness and some of your symptoms are like some that my friend experienced when she had lyme disease.

Have you been to a neurologist who specializes in MS? If you did that I'll bet you would get an MRI and some other testing done.

Good luck with this. I feel bad for both of you that you are suffering with this at such a young age.


Hi, thank you for replying. I don't think I have Lyme. I never had the Characteristic rash that people with Lyme get. I get rashes very easily, especially from incest bites, and I would remember something like that. I also think my doctor may have tested for it already.

Smoovie0704
New Member


Date Joined Apr 2011
Total Posts : 7
   Posted 4/18/2011 7:33 PM (GMT -6)   
Sounds like it could be Raynauds Syndrome also. Have you had that ruled out?

twingirl
Regular Member


Date Joined Feb 2007
Total Posts : 323
   Posted 4/19/2011 3:20 AM (GMT -6)   
There isn't always a characteristic rash with lyme. In fact my rash was very uncharacteristic and over 50% do not ever get a rash at all. Ticks are very tiny. Some are the size of a sesame seed and are hard to see. I think with your sypmtoms lyme should be ruled out with a western blot. Igenex is best. The ELISA test is useless.

medmystry
New Member


Date Joined Jun 2012
Total Posts : 5
   Posted 6/5/2012 11:54 PM (GMT -6)   
Not sure if you are still using this site, but after reading your post I was amazed because I have every thing that you do. The dizziness, nausea, bloated, difficulty breathing like my body forgets to breath, random pins and needles in hands and feet, feeling like some put a 9 volt battery on the bottom of my foot over and over, constipation, cold hands and feet, freezing episodes, only able to take lukewarm showers, constant back pain, feeling weird to walk, visual problems, varicose veins, confusion, severe fatigue, frequent urination, hypertension, and trouble talking at times. Some of these have been on and off for a while. The rest like the dizziness, nausea and the difficulty breathing seemed to start after I was sick for 3 months straight. I have had several MRI's, all the blood tests in the world and nothing except vit-d deficiency. I did have an abnormal VEP though the p100 was 109 on the right side. I am getting a lumbar puncture in 2 days. I have another MRI of my c and t-spine scheduled for next week also. I hope I get some answers or this all goes away for good. I totally know your frustration and understand that this has totally taken over your life. I have completely changed the way I eat and what I drink and I am exercising more now. Anyone else have similar stuff. AHHHHHH
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