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17255085 tn?1456426849

MS or Crazy

I have been fighting for years trying to get diagnosed for my symptoms.  I have known a lot has been wrong but have not had physicians take it seriously.  I suffer from numbness, burning, pain, pins and needles, blurry vision, I think hearing loss, difficulty urinating (finally saw a urologist who says "...what we see with multiple sclerosis..."), swallowing difficulty, loss of strength as evidenced by dropping items, weakness in legs, cognitive loss, memory issues, recall issues, difficulty concentrating, and yet still no diagnosis.  Am I going crazy?  Is it all in my head?
8 Responses
17146447 tn?1454527458
Your defo not going crazy, please don't think that.  I think most people before being diagnosed have the same thoughts, but its not normal to have your symptoms without having something.  I have Issacs disease also known as neuromyokonia or peripheral nerve damage.  I have the same problems.  Ive opened a facebook page issacs disease and put some links on.
5265383 tn?1483811956
So sorry you are experiencing this ... have you seen a neurologist?  Had tons of bloodwork looking for cause of your symptoms? (In particular vitamins B12, D and magnesium?)  Are these things all constant, or do they come then go away for a while? Do they happen together?

I was to the point where every doctor, neurologist, PT, anesthesiolgogist I saw assumed ms before my ms neuro was willing to diagnose me so I feel you pain.  

It MIGHT be in your head (i.e. MH), although chances are slim, and to that end I hope you have seen a psychiatrist as one of your rule out appointments.  My psych was a huge ally in getting ER docs etc. on board with my stuff being organic disease, and actually made great suggestions medically.

Just the fact that I was all over getting my MH investigated helped other doctors take my symptoms seriously.

You mentioned in your status you were diagnosed with demyelinating neuropathies in your upper extremioties - are you saying the EMGs were positive?  If so, there are many polyneuropathies that could be causing your issues.   this should be explored -- were you referred to a neuromuscular neurologist at the time?

If they were negative, sorry, I misunderstood.  Crazy or not initially, not having answers can drive you there quickly -- I started seeing a counselor  about 9 months in to limbo and she has been sanity-saving.  Ideally you can find someone who specializes in chronic illness.

(((hugs)))
5112396 tn?1378021583
Not having a diagnosis should not be keeping you from having your symptoms addressed. If your medical team is reluctant to treat your symptoms, fire them.
1 Comments
Agreed!
667078 tn?1316004535
The problem is doctors are all specialized and you need to see the right one at the right time. My GP thought I was a hypochondriac until I was diagnosed with MS and cancer. Her nurse used to roll her eyes at me. Now my doctor knows I am stoic and sees me immediately if I have a problem.
If you have not had a neurological exam that is where I would start. Any doctor can do one it is reflexes and such. Mine was abnormal so my GP sent me to a neurologist.
If you are seeing a neurologist they follow you over long periods of time. Typically they see you every six months. The way they think is it is not MS until they are sure it is MS. It may seem like they are dismissing you but they are not. They go by the McDonald Criteria you can look it up. Many of us took years to be diagnosed. I take the cake it took me 46 years to be diagnosed with MS. They knew I had a neurological problem because of neuro exams. Once they thought it was MS it took a half a dozen neurologists two years.
Having symptoms treated will not effect your diagnosis. I waited because I did not know any better. Unfortunatley it is hard to be diagnosed with MS. No test rules it in or out. It has to due with the doctor and what he thinks.
You are not crazy. My GP was the one who thought I had MS. I did not go to her with symptoms she just noticed how my eye strays and did a neuro exam. Then she said it was just depression. I asked how can you have depression only on the left side of the body? Depression or anxiety is what doctors say when they do not know.
Alex
17255085 tn?1456426849
Thank you so much.  I have been seeing a counselor for years.  She is one who has thought endocrine...I was diagnosed with hypothyroidism.  However saw urologist, he still feels MS.  I also read a few articles that urologists pick up MS often before other doctors because of bladder issues.  
I actually had a potential new doctor tell me I was to old to be diagnosed with MS!  I won't be seeing her again.
MRI's came back without indicating MS lesions.  I don't want this diagnosis but I want to know....it's not right.
17255085 tn?1456426849
Thanks for your comments.  I have been seeing a counselor off and on for over ten years.  She is the one that is prodding me to keep up the fight.  She knows me more than any other doctor I have seen and recognizes that in the last two years I have had significant changes.
Did I mention my urologist is the one who stated MS; I cannot fake what is happening inside my bladder.  He still believes this is an accurate diagnosis.  Also I have read articles that support urologists being able to recognize before others due to bladder issues....OMG.....so frustrated.
1 Comments
I take the cake it took me 46 years to be diagnosed with MS. I had my first attack in 1965. I was sent to the Mayo Clinic, later Duke. They knew there was something neurological not what. My diagnosis started with my GP doing a neurological exam. She sent me to a MS Specialist. It took two years and several neurologist to finally be diagnosed.
Alex
Avatar universal
First of all I have no idea what is wrong with you but YOU ARE NOT ! crazy!!! What made you initially ask questions. Do you have other medical problems. And are you so stressed out about the possibility of Ms you are noticing things you never did before. Have they done blood tests to rule out everything. The first thing you should do right now is take a deep breath. All will be fine ok. I think you said your fighting to get a diagnosis. Ok well what have they said has caused any single symptom. It's very overwhelming but the key is baby steps. The problem with MS Is that every single symptom every single person will have at some point in their life  and is is meaningless. The problem is with MS  we pay no mind to all this stuff stacks up then you freak out cause you thought it was all stupid little things. Your not!!! crazy!! your symptoms are real and your scared. I am not a dr but my uncle is my aunt is my aunt has MS as well as another family member. GET AN MRI FOR STARTS BRAIN AND CERVICAL WITH AND WITHOUT CONTRAST. 95% of the time will show damage for your sanity you just need to have it done I've been there I have 3 other people in my family with this what's the old saying **** or get off the pot. The Dr needs to just order it have it done before you go crazy. God bless you your in my prayers
1 Comments
I'm sorry I did just see you said you had MRI w/o lesions but. I also know they don't always show up and usually they do neck and brain. Honey I'm with you no one wants this diagnosis we just want to know what it is and would prefer any other diagnosis. I hope you have a really good GP. Just don't let Drs ignore you there is obvsioly something wrong and someone need a to find out what. It's easier for the Dr if you state some thing specific slowly them after he thinks about it mention the other thing but specific.  We want our Drs to know everything and especially when there is so much it's almost like we throw up so much information they don't know what to do . You take care and just relax a little or your going to have a stroke. It's hard I know but the only thing that comes from worry it more stress you dont need
Avatar universal
First of all I have no idea what is wrong with you but YOU ARE NOT ! crazy!!! What made you initially ask questions. Do you have other medical problems. And are you so stressed out about the possibility of Ms you are noticing thinfreegs you never did before. Have they done blood tests to rule out everything. The first thing you should do right now is take a deep breath. All will be fine ok. I think you said your fighting to get a diagnosis. Ok well what have they said has caused any single symptom. It's very overwhelming but the key is baby steps. The problem with MS Is that every single symptom every single person will have at some point in their life  and is is meaningless. The problem is with MS  we pay no mind to all this stuff stacks up then you freak out cause you thought it was all stupid little things. Your not!!! crazy!! your symptoms are real and your scared. I am not a dr but my uncle is my aunt is my aunt has MS as well as another family member. GET AN MRI FOR STARTS BRAIN AND CERVICAL WITH AND WITHOUT CONTRAST. 95% of the time will show damage for your sanity you just need to have it done I've been there I have 3 other people in my family with this what's the old saying **** or get off the pot. The Dr needs to just order it have it done before you go crazy. God bless you your in my prayers
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