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Is this MS and if not what do I have?

Ok this is going to be long, I apologize now.  I am a 33 year old female with 3 young children. 10 plus years ago, it all started, always dizzy, always tired, headaches, anytime I tried to go out walking I had to give up as my legs would get extremely itchy. The itch was from the inside. An extreme tingling itchy feeling. The more I tried to itch, the more it drove me nuts. So I gave up walking and exercising. Then came the optic neuritis in my left eye. That lasted for 2 months and during this two months my arms and legs felt so heavy and I would have some tingling in my feet in hands. I started to get very depressed at this point because I was worried. I went for a brain MRI and spinal MRI brain MRI shows 8 lesions. I was convinced I had MS but doctors continued to say they would sit back and wait for something else to happen. I then had my first child and during the pregnancy I felt great but as soon as she was worn and I stopped nursing everything got bad again. Numbers and pain in left leg. Left arm and hand pain running down and tingling at the end of my fingers. Headaches were bad. I got diagnosed with ITP which means I have low platelet levels and I also got diagnosed with interstitial cystitis i always have bladder problems as well as bowel problems. I felt as if I had ITU'S all the time but they were not. I have cracks in my bladder that allows "stuff" to get in and this makes it feel like I have an infection. I then had a 2nd child and again felt great until I was done breastfeeding. Everything went right back the way it was but far worst. Numb, tingling legs up to my lower back. Feet get numb, left arm hurts and hand tingling. I feel as if I'm losing my mind, I feel as what I would imagine people with early Alzheimer's would feel. I can't think, concentrate, remember anything, I even have a hard time talking. I'm getting very worried at this point. My MRI's are always unchanged from the first one. I am currently waiting for lumbar puncture results. And all other tests have come back negative. The doctors had earlier diagnosed me with lupus and I had begun taking medication for lupus but a month later they decided it was not lupus and possibly still MS but they WILL not diagnose! I'm so frustrated at this point and it's impacting my whole life, work, family, friends, and my wellbeing... please, any advice? What else can I do or ask to get done to finally get answers!
Thanks.
  
3 Responses
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5265383 tn?1669040108
Hi Jenn ... so sorry you're going through the nightmare of diagnosis.  It's incredibly frustrating.  Can't really add any more to what JJ said, other than no matter how much we want to know what is going on "now" (i.e. isn't three or ten years enough?), ms neurologists take their time.

They do it for good reason.  They want to be 100% confident with the diagnosis if it's ms because the treatments aren't exactly a walk in the park.  And it it's NOT ms, they don't want to miss something that may be treatable, or worse FATAL, or on the other hand worsened by someone taking a DMT for ms.

At this point there is very little you can do to move things along.  They are doing due diligence by seeing what fits, how the test results end up, etc.  I found it very helpful to see a counselor during the diagnostic process.

(((hugs))).  You will have a diagnosis (of what, I can't say), but not until they are certain.
Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
Hi again...

It's not really possible to tell you what you have, you have something but what that is, truly depends on the more likely condition based on your test evidence. Lupus is one condition that's said to be one of the greatest imitators, it does have a lot of similar symptoms to MS but so do many other conditions.

IF you have a preexisting dx of Optic Neuritis MS would definitely be on your potential causes list, ON can be a stand alone condition but there is a higher association with ON within 5 years when that person also has some brain lesions.    

In regards to whether or not this could be MS or not, you'd probably be better off getting your hands on all your actual neurological related diagnostic evidence eg MRI reports - lesion location, type, shape, size are important factors, Visual test evidence of ON, peripheral nerve conductor tests ?, all your neurological exam results over those years etc etc......and then go and get a second opinion from an MS specialising neurologist.

Hope that helps........JJ
Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
Hi and welcome,

Can you please brake up your posts into smaller blocks of text, people with MS commonly have visual and or cognitive issues that makes it difficult if not impossible to read large blocks of text....i've re-posted it for you so everyone can read it....

Ok this is going to be long, I apologize now.  I am a 33 year old female with 3 young children. 10 plus years ago, it all started, always dizzy, always tired, headaches, anytime I tried to go out walking I had to give up as my legs would get extremely itchy.

The itch was from the inside. An extreme tingling itchy feeling. The more I tried to itch, the more it drove me nuts. So I gave up walking and exercising. Then came the optic neuritis in my left eye. That lasted for 2 months and during this two months my arms and legs felt so heavy and I would have some tingling in my feet in hands.

I started to get very depressed at this point because I was worried. I went for a brain MRI and spinal MRI brain MRI shows 8 lesions. I was convinced I had MS but doctors continued to say they would sit back and wait for something else to happen. I then had my first child and during the pregnancy I felt great but as soon as she was worn and I stopped nursing everything got bad again.

Numbers and pain in left leg. Left arm and hand pain running down and tingling at the end of my fingers. Headaches were bad. I got diagnosed with ITP which means I have low platelet levels and I also got diagnosed with interstitial cystitis i always have bladder problems as well as bowel problems. I felt as if I had ITU'S all the time but they were not. I have cracks in my bladder that allows "stuff" to get in and this makes it feel like I have an infection.

I then had a 2nd child and again felt great until I was done breastfeeding. Everything went right back the way it was but far worst. Numb, tingling legs up to my lower back. Feet get numb, left arm hurts and hand tingling. I feel as if I'm losing my mind, I feel as what I would imagine people with early Alzheimer's would feel. I can't think, concentrate, remember anything, I even have a hard time talking.

I'm getting very worried at this point. My MRI's are always unchanged from the first one. I am currently waiting for lumbar puncture results. And all other tests have come back negative. The doctors had earlier diagnosed me with lupus and I had begun taking medication for lupus but a month later they decided it was not lupus and possibly still MS but they WILL not diagnose!

I'm so frustrated at this point and it's impacting my whole life, work, family, friends, and my wellbeing... please, any advice? What else can I do or ask to get done to finally get answers!
Thanks.
Helpful - 0
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