Im feeling really hopeless

New diagnosis and before diagnosis
1

Hi,

I am a 20 yr old female who has been experiencing a plethora of symptoms on and off for the last 7 months of my life, some have come and gone and others have stayed the whole time and progressed.

I started having symptoms January 2016. I started with pain on the right side of my head that lasted for 20-45 mins and would disappear, along with dizziness, and vision blurriness or double vision. This progressed in frequency and severity, and shortly after started having pins and needles, and really bad leg pain, often times at night. Then I started having bladder dysfunction and generalised weakness. I had my first accident in March of 2016 that has been related to this episode. Then the weakness was severe in my arms so bad I struggled carrying my materials to class everyday ( I am in art school, well WAS) and had to take breaks often since I had difficulty keeping my arm up long enough without it spasming and shaking really bad or eventually going limp. The tremors and twitching in my arms and hands started around then too. The head pains disappeared, but the bladder dysfunction and the weakness and the pins and needles became progressively worse. I started to have “episodes” of extreme muscle spascitiy and rapid eye blinking that looked much like seizure activity. During this time, I went through bloodwork, MRI testing, and spinal tap. the bloodwork came back normal except for elevated ANA levels. The Brain MRI showed 2 lesions, and the spinal MRI was negative. The spinal tap was also negative. Then the weakness got to the point where I was wheelchair bound for a few weeks, and had to progress to get my self to walk again with the help of my parents in law. The Drs. could not explain my symptoms and could not explain the episodes and tried attributing it to stress since I was planning my wedding, going to school, and working. They tried attributing the episodes to stress or the Cymbalta I was put on for Nerve pain a few weeks prior to the onset of the episodes.

Now, it is July. I am not cleared to drive due to the episodes, I am still having the pins and needles, and I just got out of the hospital again because the episodes have gotten to the point where they are more Catatonic in nature. I have speech problems, especially after the episodes, difficulty with things such as small motor skills like buttoning shirts, etc. I feel like I am becoming less intelligent, it takes longer for me to respond to questions and make conversations. Sometimes I will blank out for no apparent reason during a conversation, I will lose my train of thought. The last major episode I lost my ability to walk for days, and had to work my strength back up with still having balance issues. When I’m in the heat I feel really weak and like I am going to be sick, and I get weak all over so I have to limit my time outside. On occasion I will break out into a rash, and it is hot to the touch, but not itching or burning.The pins and needles sensations have increased in severity, and the head pains have returned. I also feel sometimes that a nerve is being constantly pinched, or my arm or leg is being squeezed. When I was in the hospital, they did an EEG and it came up as abnormal activity in my brain, but it was not a seizure and they do not know what it is. The bladder dysfunction is to the point where I constantly have to wear Depends. They did another MRI and they saw the lesions but said the current MRIs are not comparable to the previous MRIs since they were done differently (Im assuming because the first bout of my brain was without contrast and they were a bit blurry I guess, but I am not 100% sure why they are not comparable) so they cannot tell if the lesions have gotten worse for sure. I have seen a Rheumatologist as well and she ruled out Vasculitis, Lyme Disease, Sarcoidosis, and Lupus.

Now, I am back going to another Neurologist, and I just visited my primary and now he thinks it could be stress. But it does not make any sense to me. I am not able to work, or go to school, or drive. I cannot help support my husband and myself at all. I am honestly depressed and frustrated over all of this. I am in therapy and my therapist does not believe I am stressed. I feel hopeless and I’ve gone through countless number of blood tests, scans, EEGs, EKGs, etc with no definite answer. I feel I am getting worse and no one can offer me a solution of what is going on. They say it could be MS but its in the early stages if it is. I do not understand how it can be too early when I already have 2 lesions, and I am very symptomatic and it seems everything else has been ruled out. They also cannot explain the episodes, or my positive ANA levels.

When I was 15 I ws having issues as well, but not anywhere near this severe and I was testing positive ANA then. I was breaking out in a rash in the heat and had leg pain and dizziness / vision problems then.

I feel this is never going to end and I am going crazy. Could it really be from stress? I do not feel stressed, even back in January, I was really happy. I was in my dream school, and marrying a man who I love and cares about me a lot. But I am now really down and feel hopeless. I feel like there is no solution or end in sight to any of this, and I am only 20 yrs old. I just want to get my life back, where I can fully enjoy time with my husband doing activities again, where I can go back to school, and go to work, drive, had the amenities to life that made it more lively.

If anyone is or has gone through the same things, or can offer where to go or what to do, I would really appreciate it.

2

What a rotten time you are having, and at a time in your life when there should be so much to enjoy - I am sorry.

All sorts of disabling and unpleasant neurological symptoms can arise without there being any discernable disease process at work, that’s for sure, and stress (even good changes are stressful) is, I believe, often on the suspects list, particularly when there isn’t anything else to go on.

But that scan evidence should surely offer some useful pointers to your medical advisors as they try to narrow down the options of what might be amiss. I hope that your new Neurologist is able to look at your history in the round and help take things forward.

Good luck.

Alison

3

Helo there hun.

My word! What a truly awful time you are going through.

From some of your terminology, are you in USA? They seem to do more tests etc than our NHS does, BEFORE people become ill, don’t they!

Having said that, it does sound like you are having a lot of tests and treatment, to no avail .

Neurological problems can be extremely difficult to diagnose. In my own case, it took years, including being wrongly diagnosed!!

Stress can manifest itself in all sorts of weird and wonderful ways!

I think all you can do is stick with it, tell the neuros that your therapist doesn’t believe stress is causing your problems. Can you check that they are sharing and studying your case together?

I’m sorry I don’t have any further advice to offer

Pollx

4

Yes I live in the United States. They do not do any tests before people become ill. We dont have very great preventative health care, or at least I dont with my insurance. But many people here complain about our system here. Most of my testing has been done by hospitals from ER visits with observational stays. Other testing has been done by Rheumatology because of the ANA and symptoms, or Neurology because of my symptoms.

This honestly has been going on for months and within the last few weeks is when they finally decided to monitor me to make sure I dont get anymore lesions or they get any worse.

I do have a history of depression, but no anxiety. I will be completely dumbfounded if stress can cause all the clinical abnormalities they are finding, plus all of the symptoms that are just progressing. If they really think it could be stress then I dont get why they dont give me anything to relieve it. If this is stress, then I should be very seriously stressed to cause all these symptoms and be at risk for other potential serious symptoms, like a panic or heart attack or something. I should have stomach aches and trouble sleeping at night. I should have high blood pressure. Which is not the case. So either I have a really poor lack of self awareness, or I am really not under stress, or Im some kind of serious medical anomaly where stress symptoms are completely opposite of what they usually can be.

I just signed a release form from my therapy records yesterday to give to my primary. To me it seems they want to take the easy route. I guess the lesions, the abnormal EEG results, and the ANA levels in my blood work are all just coincidental. -_- I will be happy when they get the reports and see I do not have even an inkling of stress. Maybe they will start to look into other theories and get this ball really rolling.

None of the Drs that have suggested stress are completely adament that it is stress, but often times they throw it out as a theory, but I wish that they could be a little bit more empathetic to what they say, and how they approach it. I find it pretty offensive. But maybe I am just a bit overly sensitive to it.

I have been doing as much research as I can on the idea of neurological symptoms due to stress, and all I find is that the stress could be caused by the condition itself, or the stressor has triggered the neurological disease to come to light.

This following quote from an interview with Neurologist Dr Nitin Sethi at the New York Presbyterian Hospital talks about links of anxiety, depression, and stress with neurological conditions. I quoted the section on MS, but he covers strokes, migraines, heart disease, and chronic pain.

http://www.healthcentral.com/anxiety/c/157571/112690/neurologist/

  • Let’s talk about specific neurological conditions which can be affected by stress.

  • How about Multiple Sclerosis?

  • The disease usually first strikes a healthy person in his or her early 20s. The course of disease then varies. Some patients experience a relatively benign course with few attacks and no major disability while others are not so lucky and experience multiple attacks separated by time and incur increasing neurological deficits such as weakness, problems with gait and balance, tremors and urinary incontinence. Psychopathology such as anxiety and depression is well known in MS. For a long time it was felt that it was the increasing disability which led to patients becoming depressed and anxious. Many in fact attempted suicide. When the incidence of depression and suicide in patients with MS was compared to that of patients with another equally disabling condition such as chronic inflammatory demyelinating polyneuropathy (CIDP) which is a demyelinating disease of the peripheral nervous system something very interesting came to light. In spite of equal disability, MS patients still had a higher incidence of depression and anxiety. What does this tell us? It seems diseases like MS and epilepsy which affect different parts of the brain such as the temporal lobes are themselves associated with psychopathology such as anxiety and depression.

There has been many others to say that stress can TRIGGER certain diseases to come to light, especially neurological conditions such as epilepsy, MS, and CNS conditions. Other times, symptoms such as depression and anxiety can be due to the effects from dealing with the disease and its symptoms, and/or the damage to the region of the brain which cause the symptoms.

So, in my case, even if I was stressed, it is coincidental that the apparent “stressors” took place the same time as this episode of symptoms and such started come about, which I believe should not rule out the fact that it may have triggered the disease to come to a head, and not solely due to the affects of “stress” itself with no other underlying conditions, especially when I have abnormal clinical findings, and a history of more issues in the past since I was 15.

I think they are more stumped because they don’t know how the episodes connect to everything else that is going on. I am hoping to find out if someone else has experienced these weird episodes that started out as weird muscle spasm attacks and now have moved into more catatonic episodes, along with all their other symptoms that could be MS related or related to any other neurological condition.

Im tired of getting poked and prodded, with little answers to what could be going on. Its got me feeling really hopeless, and my husband is constantly worried about me being home alone because he’s afraid something will happen like I will fall, or have a bad episode or something while hes working. Its also depressing because I have to rely on him for practically everything: finances, running errands with me, helping me and pushing me when I am in a chair since we’ve been borrowing his aunt’s when we need it, so sometimes we get a transport chair and he has to push me, etc. Sometimes to even do housework in our apartment is too much. I am exhausted because it took so much effort to clean and my whole body aches. We had to hang the pots and pans on the wall so I could cook, I cant bend down or squat anymore because I cant get myself back up often times. Ive become a fiend to want to have control of everything I possibly can because I am so not in control of so many other aspects of my life. So sometimes I can be irritable over ridiculous things, like having the windows rolled down in the car and he doesnt want them down, because if I could drive my car, I would have the windows rolled down. But, I cant drive. I even go to bed with him every night at the same time because he wont go to sleep without me to ensure that I am okay. Sometimes even when I am tired when he wants to go to bed I force myself to stay awake in bed another half hour, just so I can feel in control of that. Feel in control of some aspects of what is happening in my life or my body. It sounds ridiculous, but I feel so helpless. I can understand now why senior citizens are so upset when they slowly lose their privileges and such. It’s awful.

Is it too risky to start me on the treatment for MS if they think it could be? Im fearful that I am going to end up like many of the stories there are with people waiting for years for a definite answer, and by that point ill be much worse. I am also frustrated that if they even have an inkling stress could be the source or the whole reason for this, why they dont give me something to relieve that. I hate taking meds, I am more into taking supplements and having a personal healthy lifestyle; but after 7 months and counting, I just want my life back.

5

Hi again. Due to the unusual high temperatures here, I am suffering from heat exhaustion and am finding it difficult to take in /read large amounts of formation.

I’ll keep reading bits of your message and follow what ensues. Look after yourself.

Pollx

6

hi

like poll, i’m wilting like the delicate little flower that i am.

it’s difficult to give advice from the uk as our system is very different.

meanwhile ask for treatment for your symptoms.

i see a bowel and bladder nurse (formerly continence nurses) and they are brilliant and have helped me to manage my bladder.

mindfulness meditation has helped me a lot.

try to see the good side of life - a beautiful sky always does it for me.

good luck

carole x