Frustrated....funny. Possible MS.

[Mr.PotatoHead]

I used to post on MS Connection, but that place seems really slow and I'm hoping to find more community here. Here's two posts combined from that place to help introduce myself.


SO......I have been officially labeled, "Possible MS" right after my 40th birthday. My internist, who I saw today, isn't happy with how the local neurologist is handling things and he's going to refer me to a neurologist at an MS clinic. I need to have special precautions taken in order to have an MRI because of my pacemaker, and from what I understand can only have a "brain only" MRI. I have, up to this point refused an MRI, but today I'm finally giving in. I'll go ahead and have one eventhough I know that it might not show anything. A brain MRI won't do me any good if I can't also have a spine MRI, but it is what it is. I know that through all of this testing that they might not find anything, and that's part of the risk in going through all of this, but I realize that this won't go away, this won't leave me alone, and I might as well just get this over with. Meeting my insurance deductible already for the year helps too. lol.

My local neurologist asked me if I had ever considered psychotherapy. My internist has basically diagnosed me with MS (based simply on my clinical timeline spanning the last 15 years, and most recent "flair"), but needs me to see the neurologist in Atlanta for a complete work-up, and he says, "so they can hurry up and get you started on treatment". A lot of my symptoms have gone away but I'm left with a few. At least I don't stutter anymore, and I'm not as anxious. I think I'm just settling into my "new skin", and I know I still have a lot to learn. It's very relieving to know that I have the support of my internist who said to me, "believe me, I wouldn't put you through all of this if I didn't think you have MS, and I would tell you straight up if I thought you were crazy. Your symptoms are NOT caused by anxiety. Your symptoms from this recent MS flair made you anxious, and I can certainly understand that."

He's placed me on Baclofen to help with my severe muscle cramps, pain and tightness. I still take the Klonopin the neuro gave me. I quit taking the Gabpentin because my internist thought it was causing me to stutter (which I know it doesn't because I've taken it since then with no ill result). I'm hoping the Baclofen helps with my muscle issues. I'm hoping that my hands and arm symptoms will go away soon, as this limits my ability to play my musical instruments. My internist also said to me today that he's noticed that my voice isn't as strong as it once was. Maybe that'll come back too. I just take each day at a time, because I'm learning that each day is different. I roll with it, and it ain't always easy but I try to just "deal with it" and go on. I mean, do we really have another choice.

I told my internist today that a tiny bit of me doesn't believe him. I realize that's fleeting denial and that seems to come and go. I can be fine one minute thinking positively "I can do this, it's not a death sentence, but rather a LIFE sentence- to live life to its fullest while I still have the ability to do so", then the next minute- I'm in disbelief. I know this must be normal.


    Today at about 4pm, after feeling a slight pressure in my abdomen, I realized that I hadn't peed all day. After I realized this, I had to stop and think, "Have I really not gone to the bathroom, or do I just not remember?"

    For MS symptoms, I take a small dose of Klonopin which seems to help my tremors, Baclofen for painful muscle cramps and pain, and just recently added Neurontin again- to see if that helps with my painful muscles. I don't know if any of these meds can add to urinary retention.

    On a side note, I just finished folding laundry and told my husband, "I would've never thought, in a million years, that folding clothes would hurt." Lately, I've been having more and more hand/arm symptoms of numbness and pain. It sures feels like I should have carpal tunnel, although I've had studies which show absolutely normal nerve conduction. It's just frustrating when easy tasks become difficult or painful. Ergh! My left wrist is hurting just to type this, and my right hand is tingly.

    I'm trying to be patient with my internist while he refers me to the MS Clinic. I have a few lingering symptoms from this last episode. It seems now I have some new ones after just a short 2 week break of feeling half way decent. Hmmm. The last couple days it seems like cognitive and word finding problems have come back. I'm wondering if this is just gonna be a lingering, gone one day- back the next sort of deal.

    MS sure is a tricky thing to learn to deal with. Still I just laugh at myself. Even if all I feel like doing is crying and feeling sorry for myself, I just roll with it because I know I don't have much choice than to do just that. Ain't no sense trying to fight it. In fact, I think it'll just make it worse. So my hands aren't as nimble and sometimes they shake, but I just smile and laugh at myself. I make myself play guitar and my other instruments. I know music is therapy to me in more ways than one. I'm just going to keep doing everything I used to do until I can no longer. Sure sometimes my arm muscles burn from brushing my teeth, and my hair dryer feels like it weighs a ton after holding it for just a couple minutes. Ergh......I just keep on keeping on.

I'm glad I found this place. :)

[supermum_ms]

I am truly sorry you are feeling misunderstood by our responses......gentle hugs, it genuinely wasn't anyone's intent to upset you, we are honestly trying to be of help to you!!

I'm not sure where this thought is coming from but PLEASE keep in mind that people with MS, actually often have a lot of difficulty reading large blocks of text and your post is very long and filled with major and minor details to remember.........many pwMS have visual issue (double vision, Nystagmus, ON etc) and or experience cognitive issues retaining 'new' information!

Many of us here have learnt to not read between the lines, or draw meaning not stated from the 'words' people write, because misunderstandings are just more likely to happen if you do. We often ask questions if not sure, and we will bring up ideas posters may not have even considered or necessarily happy about if it's a sensitive issue for them but we always try to do our collective best to be of help to everyone...

Hugs..........JJ

[suspiciouscombo]

I concur with Kyle on this notion.

[kwarendorf]

I'm sorry you feel misunderstood. Our intention is to provide you with information based on our personal experience with MS.

We are not doctors or medical professionals of any sort. We are people who have ventured ontp the dark place that is the MS diagnostic process. Our remarks are based onn that experience.

MS is a VERY difficult disease to diagnose. It is a diagnosis best made t=by those who are trainned and experienced in diagnosing and treating MS.

We'd love to have you stick around and benefit from our experience. You may not always like what we say, but it will always be said with your best interest at heart.

Kyle

[Mr.PotatoHead]

I don't think people read everything I write on here. I think with my current doctor regardless if we know eachother outside of the office, I have received the best care I've ever gotten in my whole entire life. In fact, it's the most personal care I've ever received. He's the one who's concerned enough to send me to the 1st Neurologist and then suggested a referral to another one more specialized in MS in the hopes of getting answers for the both of us.

I've been here 1 day, and posted one thing and already feel so misunderstood and unsupported.  Like everything I type on here -however positive- is fought back with negativity.

I think I'm leaving this place, and that's my opinion.

[kwarendorf]

I'm not sure that blurring the line between friend and physician is a good thing. When it comes to MS, a specialized, analytical doc is the way to go, in my opinion :-)

Kyle

[Mr.PotatoHead]

Thank you everyone, You've made some great points.

Yes, both my internist and neurologist thought MS until the neurologist gave me Klonopin and it helped so he chalked it up to anxiety, and told me to come back in 2 months. I saw the Klonopin mostly helps with my tremor, but am left still with some troubling symptoms which my internist wants me to be evaluated for. I have to be "sent off" for special MRI's so he figured might as well send me off to a new neurologist too where he'd have access to the information and be in the same network- wherever that be.

I might also add that my internist does know me a lot better than the neurologist does as we're both musicians and attend the same church. He casually can tell me things I know he doesn't tell most patients. He speaks to me more as a friend, and I should've clarified that.

I know mental health is as serious as any other medical condition. As "crazy" he meant, "symptoms not all in your head", which felt actually great to be validated and supported in. I am not an anxious person and am actually usually very "chill", laidback, and "happy-go-lucky", but symptoms of numbness, tingling, shaking, mental impairment and the inability to speak completely FREAKED me out and did make me quite anxious.

He, as a friend and physician would refer me to a psychiatrist or mental health professional if he believed that's what would help me. For now, he's more concerned with getting his greatest suspicions of MS ruled out and dealt with in diagnostics and treatment he alone can't provide. He simply validated what I felt to be true as well in that my symptoms were not caused anxiety, but these sudden symptoms of this last episode caused me to be anxious because I didn't know what was going on and it was scary. I don't know anyone who wouldn't be anxious in that situation of uncertainty.

I no longer feel like I'm going "crazy", or losing my mind. I know I have, regardless of what happens next, the support of my doctor and friend who will continue to treat symptoms and tell me honestly what he believes is best for me. THAT means the world- a supportive health care team in both mental and physical well being. That and complete trust, as a Christian, in God- the almighty physician. There's peace now and whatever tomorrow brings. He is the potter and I am the clay. What will I be today?

[supermum_ms]

Hi and welcome to our little MS community,

I too laugh, my sense of humour has always been a constant and it's what gets me through all the weird stuff and helped keep me sane-ish :D through out my life. I'm basically a talk-a-holic and didn't realise how important speech was to my identity until i lost it, I walk like a human string puppet but i've definitely found loosing the ability to communicate the difficult one to accept....

I actually think i was lucky to have spent my life working with children with disabilities, i already had a lot of understanding and a few tips and tricks in my tool box to keep me calm and my mind focused on what i needed to do to function better and still be me, me lol if that makes sense.

If this is MS for you, i'd recommend you keep an eye on your levels of fatigue and keeping your self cool, because over heating and physical fatigue will bring back your issues 'temporarily' until you've cooled back down and rested enough. It's possible that you are experiencing the pseudo effect, which isn't a true relapse but one of the on going and often confusing issue, very commonly experienced by people with MS.  

oh i too misread and thought it was your internist who recommended psychotherapy but with everything mention about your internist, i just saw it as trying to provide you with additional help, build your coping skills etc but now i've re-read, I think what you're saying, is that the 'neurologist' you saw was suggesting psychotherapy because he was of the opinion your symptoms weren't from a neurological condition like MS but mental health causation?

Unfortunately, mental health is probably the greatest mimic for 'symptoms' associated with MS, although there are many other medical conditions that also cause the same or similar symptoms to MS, so even when it does look like MS, it sometimes still doesn't turn out to be MS when all is said and done....

Unlike mental health causation though, neurological conditions generate 'clinical signs' of neurological abnormality.....I would suggest you get a copy of your neurological assessments (neurologist and internist) and note any of the unilateral or bilateral abnormal clinical signs mentioned in the reports eg positive babinski, hyper-reflex, clonus, nystagmus, foot drop, action/essential tremor, spasticity etc etc

I would also suggest, as i typically do for anyone with the M/H idea hanging over their head, is to still get your mental health appropriately assessed, even if there is absolutely no way that idea makes any sense. IF the 'idea' of M/H is on your diagnostic table, it's generally always going to be in your best interest, to have all the possible alternative diagnostic idea's excluded.

M/H 'causation' is no different to any other medical condition, it too can be ruled in or out of your diagnostic puzzle, so please seriously consider the benefits of getting your mental health professionally assessed....

Cheers.........JJ    
  

[suspiciouscombo]

That is an interesting post and in depth. Thank you for sharing. This provides me an idea of what others are experiencing regarding this journey of uncertainty ... even with a diagnosis as I've learned from a few others.

[aspen2]

Welcome to the community, from a fellow limbo-lander :).  We all seem to have such bizarre stories ... makes you wonder.  I'm presently waiting for a referral to a different (but non-ms specialist) neurologist.  Honestly hoping it will help because my ms guy was constantly contradicting himself.  Just re-read the health page "Lies my Neuro told me" here and they have apparently quoted him all over the list ;).

I'm glad you found this place too :).

[Mr.PotatoHead]

That's not what he said.  

[immisceo]

This community can be a little quiet on the weekend, but things usually pick up a little more during the week, just in case you don't get many responses at first.

I agree that if MS has been the culprit these past few years, it should show up on a brain MRI. In the mean time, I'm glad you're getting some help with symptom management. Alex has given you some great specific feedback there.

Having to visit more than one neurologist on the diagnostic trail is not uncommon. Many people here have had to visit a few or get second opinions. It's a tough situation to be in, but you're not alone in that.

I am troubled by your internist conflating diagnosing and treating someone for anxiety with calling them crazy. If that's what they said, it's an unprofessional and misinformed perspective. I personally wouldn't trust my care to someone with such an outmoded mindset, and I say that as someone with MS *and* a history of anxiety issues that predates my MS. Mental health challenges ≠ crazy. Patients and society as a whole are not well served by this perception.

[Mr.PotatoHead]

I'm hoping to solve some of my pain management issues when I see this MS Neurologist. I've also contemplated switching to a less stressful job and trading my stick shift in for an automatic. All decisions not to make too hastily.  

I'm also finally hoping to get an MRI and possible other diagnostic tests done at a hospital more equipped for someone with my medical history. I hate always being the complicated "teaching case" which is how my internist pitched it to me. Ha!

I have battled some strange symptoms throughout my life, but have never thought of MS. After this last "flair" (so my internist calls it) I am left with some residual symptoms that are nearly constant and some that come and go. I am thankful I can speak clearly now and it doesn't take 2 minutes and 14 syllables to say "thank you" to my doctor.

I have dealt with physical symptoms most of my life, but the cognitive/speech problems have been the most agonzing thing to deal with and i feel like i still need therapy from that traumatic experience. I thank God that those symptoms have passed for the most part. It's very humbling to be an intelligent person trapped inside a body that can't speak or read intelligibly.

MS is a crazy thing and I know I still have a lot to learn. I just take each day at a time, focus on what I can do and try to keep a sense of humor about my ever so changing daily challenges. MS, in its unpredictability, is now what makes life interesting.

[HVAC]

Sounds like you are coping well. Many MSers only have brain MRIs. Other MRIs often come out inconclusive because it is hard to hold still. If you have had MS for 15 years it should show up on a MRI. The neurologist may follow you over time so do not be surprised. Some get a diagnoses quickly others do not. I had a positive MRI and other tests but it still took two years to be diagnosed.

You might need to be another drug like Gabenpentin for nerve pain. There is Trileptal I was on that for years. I go to a pain clinic.

Alex