What could this be?

[Bambi2015]

I am in constant pain, fatigued, have muscle weakness, blurred vision and constant numbness shoulders down to my hands.

I have had so many tests ran, and 1 neurologists stated maybe it was a mental issue!!! The only mental issue is that I have been going through this for a year!! I want my life back, I don't want meds, I want help!!!

I have had mri of brain and cervical spine- with and without contrast.
I had lesions on C2, T5, T8 of spine but no lesions on the brain.

My EMG came back abnormal
I had a muscle biopsy done, negative
Bloodwork- negative
Lyme disease- negative
B12 deficiency- negative
Endoscopy-negative
Colonoscopy- polyps found was tested- negative
Please someone help, it's not getting better!!

[Bambi2015]

Thanks, I would be okay with taking medications if they were prescribing for the right problems. I'm not depressed as they say. I'm not making this up in my head, I don't think you can imagine having lesions on spine lol. If they were honestly trying to help and not just trying to pass me off BC they don't want to help, I would be more than willing to take them. As you said they give pain meds but they do not help. I have explained this to them and they act as if I'm lying or one of the people that doctor shop to get pain meds. I'm not that type of person and need to be able to function bc of children. I don't want to be doped up on meds,I would just like someone to want to "try" to help. The specialists I have seen seem to just write it off in the first five minutes of speaking to them.

[HVAC]

I thought I would finally be diagnosed and a doctor and his team would basically fix all my problems. I knew there was no cure. What I did not realize is I was the same after diagnosis as I had been before. I had not even thought about asking for symptom relief the two years I was going through the diagnosis process. I thought the diagnosis was important to treating the symptoms.

After diagnosis you usually get on a drug which helps slow your progression. It does not work on symptoms. If a flair is really bad they can put you on steroids which help temporarily. They do not help with the disease itself.

Then depending if you have neurological pain or muscle spasms the will give you medications and or PT.  Muscle relaxers for the muscle spasms. Usually off label anti seizure drugs, Lyrica, or anti depressants for nerve pain. Narcotics are not as good on nerve pain. The neurologist may also send you to other specialists because of all the other problems MS causes like Urological or PT.

So I would take the help they give for your symptoms. There is no need to suffer needlessly. Besides the drugs to slow progression MS drugs are run of the mill. At first I got all my medications for MS symptoms from my GP. My MS Specialist sent me to a pain clinic. I actually take less pills than I used to and my quality of life is better.

I have double vision, vertigo, and trouble walking. These are things I had to learn to live with. Other issues such ad nerve pain and muscle spasm are good because of the medication. Even ten years ago many neurologists did not think there was pain in MS. Now they know.

I thought once I was diagnosed I would see my Neurologist every few months. I saw my doctor in Feb. 2010 for first time. I have seen him 6 times. There just is not much he can do for me.

They would have had me on the same medications before a diagnosis as they would after the diagnosis.

PT is also good for MS pain. Again they would be the same exercises with or with out a diagnosis.

Take care and let them treat your symptoms there is no magic bullet.

Alex

[Bambi2015]

Thanks guys for the advice, I am just in a lot of pain and I feel like from my waste up that I'm being squeezed like everything is tight. Just want to find out how to fix it. I'm tired of dr. Trying to give pain meds to me so I shut up. I want a solution to the problem not a cover up! I don't want to take any medication.

[HVAC]

Is your Neurologist following up with you? Saying it is mental means I do not know in doctor speak. My PCP sent me to a neurologist because she thought I had MS. When one neurologist said it was just headaches even though I had lesions and other tests showed MS the PCP said it was just depression. I said okay so how can depression only affect my left side? She left the room and called a MS Specialist and got me an appointment. I had only three lesions so it took longer to get a diagnosis.

If this neurologist is a dead end I would find one who specializes in MS. Neurologists specialize and not all of them know about MS. Each case of MS appears with different symptoms depending where damage is.

You might not have MS but you might. I would have them rule it in or out.

Alex

[supermum_ms]

Are you asking if there are any medical conditions other than MS, that would cause spinal cord lesions and those specific symptoms?

If so, yes MS is not the only medical condition that causes spinal cord lesions, though MS would probably be the more common cause of 'multiple cord lesions' because it is the most common form of demyelinating conditions in women in the 20-50 age group. see article below  

http://www.dartmouth.edu/~dons/part_3/chapter_23.html    

Cheers.........JJ

[Bambi2015]

Do you know of any other  causes for aches, constant numbness, weakness and spinal lesions? I have been on every forum I could find, talked to anyone that would listen, and have had no responses other than MS advice. I'm just so tired of being tired! I'm tired of being in pain, and I feel like such a horrible mom when my child asks me to play with him, but I'm just too tired and weak. I wish I could explain how energetic and outgoing I was before and within a week it seems it just started going down hill from there.

[supermum_ms]

It's really really common to have a few non specific brain lesions show up, even in a perfectly healthy normal brain but we've had many stories of people actually having non enhancing or non specific lesions on their MRI, neuro telling them they had no lesions at all, not enough to be relevant, not in one specific location, migraine related not MS etc. and they were eventually diagnosed with MS.

eg A couple of non enhancing or non specific periventricular lesions on there own are not very suggestive of anything really and so they are often dismissed, not counted, classed as normal etc BUT if that same person 'also' has one or more spinal cord lesions which is suggestive of MS causation, then every lesion discovered should be considered within the big picture.

According to the latest Mcdonald MS diagnostic criteria, 1 or more periventricular lesion AND spinal cord lesions would be enough evidence to put MS at the very top of the list, multiple lesions in both the brain and spinal cord, could potentially be enough evidence to meet the criteria for clinically defined MS.

Unfortunately MS isn't excluded by an LP, no single test can technically exclude MS from the equation but it's not uncommon for a neuro to incorrectly exclude MS based on a persons LP results. Approximately 10-15% of MSers who have normal LP's, so it's more common to have a positive LP but there are still 10's of thousands who don't.  

I always think it's better to double check exactly what, if anything was discovered in all your tests, your neurological assessment will have noted abnormal clinical signs, your brain and spinal MRI's will have noted lesion and location, LP - obands, protein etc, nerve conductor tests, VEP/OCT, blood tests etc

Altogether your tests evidence will collectively point towards the more likely causation, but things like age group, gender, medical history, symptom type and remitting pattern etc will additionally help limit or help identify potentials too. With multiple spinal cord lesions an MS specialising neurologist would be more likely to identify MS from your collective evidence and clinical signs and well worth considering imho.

Cheers..........JJ
    

[Bambi2015]

And thank you for the advice I have tried everything from gluten free diet, 5sth supplements, B12 supplements,fruit and veggie diet, body cleanses anything I could do on my own. Even was tested for fibromyalgia and was on meds for that - with no relief and fibro was ruled out.

[Bambi2015]

That's the only thing that the first neurologist stated was the spinal lesions on spinal chord. That there none on the brain. I also had a lumbar puncture that showed negative for myelin sheath.

[supermum_ms]

Hi and welcome to our little MS community,

That neuro is definitely 'mental' if he or she is associating multiple spinal cord lesions with mental health conditions.................run, wobble or crawl if you have to and get the opinion of a neurologist who specialises in MS!!

Keep in mind that MS is not the only condition that causes spinal cord lesions but it would have to be very high on your list, and definitely needs to be considered when you have multiple spinal cord lesions. It might actually be worth looking at your brain MRI reports and seeing if there were any 'non specific' brain lesions noted but dismissed as relevant.

It might be an idea to get a referral to a pain clinic, not only will they help specifically find the right treatment plan for you, but they are also really good at nutting out causation and it could potentially get you closer to getting the correct diagnosis or pointed towards it at least.......  

Do you know what clinically abnormal signs showed up during your neurological exam?

Cheers........JJ

PS you might also consider getting your 'blurred' vision assessed by an opthalmologist.