I need help from anyone, because I am struggling

[gummybear1226]

I am a 30 year old mother of two young boys.  I was extremely healthy and never hospitalized, that is until I had my youngest son, four years ago.  A month after having him is when all these symptoms started plaguing me, and some of them are getting worse.  I have been to countless doctors and specialists, and they give me the impression that they are not sure what could be going on with me, but they still diagnose me anyways.  My blood work shows that I do have an auto-immune disease, so the rheumatologist told me that I have Lupus and Rheumatoid Arthritis.  I was diagnosed by a neurologist as having Fibromyalgia and a Pseudo Tumor Cerebri ( severe swelling of the optical nerve).  A back doctor has diagnosed me as having bulging/herniated disc in my back, that causes inflammation around the spine.  A Gastrointerologist diagnosed me as having IBS because I stay constipated.  An Endocronolgist found abnormalities in my blood work, and although they didn't diagnose me, they told me all the signs point to a hormonal imbalance.  I have also visited a Urologist for trouble/frequency urinating and blood keeps showing up in my urine, but they are not sure why.  I also went 3 1/2 years without a menstrual cycle and the Gynecologist couldn't figure this out either, It started back about 6 months ago and is very heavy and painful.  I have been hospitalized 6 times for having seizure like episodes, where I get very dissoriented, slurring speech heavily, and falling down.  My very 1st symptom was chronic leg pain, and the doctors kept diagnosing me with different illnesses and medicating me, but the medicines never worked.  These diagnoses from all these doctors might explain one or two symptoms but never the majority.  I find it so hard to believe that someone can go from being perfectly healthy to having over 10 different illnesses in less than a year and the fact that I have to go to so many different specialist that don't communicate with each other is frustrating, so I am trying to figure out what is going on with me so I can tell the doctor.  So if anyone can give me any advice, inputs or opinions I will be forever grateful.  My research of all my symptoms points directly to M.S. . My mother has been telling me she thought that is what is wrong with me and now I believe her.  My symptoms include chronic leg pain that is debilitating the majority of the time, substantial vision loss from swelling of the optical nerve, shuffling gait, unbalanced/unsteady while standing or walking, my middle and ring finger curl into my palms as well as my thumb, constipation, toes are numb, trouble swallowing, the "seizure episodes" come and go, my memory is shot and I have a very hard time managing and organizing my thoughts, I feel like I need to urinate constantly, but it takes me forever and only a little comes out, electical type shocks in my arms, trouble talking( I think about what I want to say but I repeat words, stutter alot and forget what i'm talking about,  I absolutely cannot go outside when its hot because I get very weak and dizzy, severe trouble falling and staying asleep, very tired and weak all the time, constantly dropping things, and I have become so irritable and depressed lately because of everything going on.  I must figure out what is going on with me, 95% of the doctors I have seen come across as having a careless attitude, and I really need someone that cares, so that I can start moving on and at least be able to work on acceptance and treatment.  I am sorry this was so long but once again, if you could please take time to give me any advice or information I will really appreciate it.          
                                   Thank You so much!

[Lulu54]

You already have great advice from Ess and Kyle - I just want to add my welcome to this forum and I do hope you will come back and stay in touch with us as you look for answers.  I'm no doctor or even a medical person - just another one living with MS - but everything you describe doesn't fit the classic MS profile, but this crazy disease often does what it wants and colors outside the lines. I agree completely with finding a neuro who specializes in MS to do a thorough evaluation.

This must be so tough, but especially with young children.  I hope you get answers, soon.  

[SarahL2491]

think willaway's coments were to gummybear not essdipity!
we all hit the wrong keys occasionally !

[willaway]

Take your eye results and other data with you to appointments . My eye doctor said when I get a brain dye MRI to make sure to go to a place where they have good equipment- a modern MRI machine-  AND good people reading the report.
So I would say the same thing to you.
Sorry for all your suffering , been there too. Very rough being tossed from one dr to another. Try and rest more if possible, my symptoms definitely get worse and I have more accidents when Im tired.
Make sure to keep a copy of your records and bring with you to every appointment.When you have a lot of issues it is too much for most drs to deal with unless it is right in front of them.

[gummybear1226]

Thank you for writing me back.  I feel if I could be diagnosed properly for whatever is happening to me I would be able to accept it and deal with it better.  Its hard dealing with all these symptoms, but its unbearable when you know somthings very wrong and the doctors are left dumbfounded.


Thanks again and take care.

[kwarendorf]

It is within the realm of possibility that lesions were overlooked if they weren;t looking for them. It's also in the realm of possibility that lesions can be missed, or hidden from view, if they are looking for them.

This is why, if you want to pursue MS as a cause for what ails you you should see an MS specialist :-)

Kyle

[gummybear1226]

Yes, but I have read quite a bit of research that said you can have lesions that wont show up on an MRI.  When they did the MRI they were looking for herniated disc, so im not sure if lesions would have shown up or if they could have been overlooked since they were looking for somthing else.
Thanks for writing me back.

[kwarendorf]

Hi Gummybear- I'm sorry your having a rough go of it.

I agree with ess. If you do have MS, you also have other things going on. She is also right in recommending that you see a neurologist tha specializes in MS. It needs to either ruled in or out.

Have any of the doctors you have seen done any MRI's?

Kyle

[essdipity]

Welcome to the forum. You have so much going on that I can see why your doctors are just puzzled and are confusing you too. No one here has the medical credentials to say anything definitive either, but we can comment on our own experiences and the knowledge we've gained about MS.

So let's try to speak of your situation in MS terms. It would be rare that anyone with MS would have so many and widespread symptoms so relatively early in the disease process. Not saying it can't happen, of course, but that makes the diagnosis of MS alone much less likely. Also, if your blood work shows markers for certain things, like anti-nuclear antibodies, that points away from MS and towards some other autoimmune diseases.

You do have a lot of symptoms found in MS, but since MS can manifest itself in so many ways, it shares symptoms with literally dozens of other conditions. Many people post on this forum because their internet searches show symptom matches with MS, though there's a lot more to it than that. And seizures, IBS, hormonal problems, absence of menses and other issues you mention are not generally part of the MS picture.

What I'm saying, in my not so well expressed lay terms, is that if you do have MS, you have other disorders as well. I think that's what you've been agreeing with when you describe how doctors have reacted.

So, I think you need a comprehensive workup by a neurologist who specializes in MS, especially one at a big MS center. The emphasis in that workup will be a thorough neuro exam, which should take 30 to 60 minutes alone. From that, tests would be ordered. In today's world, it's virtually impossible to get an MS diagnosis unless MRI images are positive. There are other nerve and vision tests that can be ordered as well, most to rule out a central nervous system involvement. The process goes on, depending on findings.

It would be good if you could be examined at a big medical center where  doctors in various specialties work in tandem on one patient. Mayo is like that, though for reasons known only to them, they refuse to follow the generally acccepted criteria for MS diagnosis known as the McDonald criteria. Still, their findings would be helpful. In the absence of that kind of setting, take all your test findings and other records, as well as a concise timeline of your history with these issues, to the MS specialist.

I hope you get to the bottom of things soon, and that you'll post back with more info as the process unfolds. When you do, please break your text into much smaller paragraphs, which make for easier reading. Many here have eye problems which make reading large blocks of text almost impossible.

Best of luck,
ess