New here--My story

[Nerve_Wrecked]

Hello, my name is Christine, I'm a 33 year old stay at home mom to a 2 year old girl and a 4 year old girl, living in Saskatchewan Canada, and I've been doing the "diagnosis dance" for the last 2.5 years, and am still in LimboLand (hope it's ok that I am here). One of my PCPs (I kind of have 2, since my regular PCP is 50km away and books up quickly) suspected MS, until the neurologist she sent me to convinced her she was wrong (before having seen me), and the clear MRI confirmed that to both of them, my other PCP told me "My gut tells me it's MS, but it will just take some time for it to show up on the MRI". He had another patient like me who didn't get an actual diagnosis for 20 years, because of the clear MRI's.

My neurologist basically sent me on my way with an "you have symptoms on common with Chronic Fatigue Syndrome, you can come back and see me though if your symptoms get worse" (yeah, I'll run right out and do that). My PCP disagreed with the neuro about that, since I don't have most of the "hallmarks" of CFS.

To date, my symptoms have included (not in any particular order, because that’s too much for my poor brain to handle):

*Electric shock sensations body-wide (not related to neck flexion)
*Vertigo spells
*Sore spot on scalp
*Muscle twitches in legs (fasciculations)
*Movement Hesitancy-arms
*Sudden jerks in the legs, ankles and wrists (and once in the neck)
*Clumsiness (dropping things, trouble picking things up)
*Neck pain (like a kink in the neck but lasting weeks or even months)
*Stiff left calf muscle
*Numb left side of my throat and mouth
*Muscle spasms (mild to moderate) in legs, feet, stomach, back and neck
*Stabbing pain through the eyes
*Inability to swallow solid foods for 1 month, and intermittent throat discomfort since.
*Colon infection
*Numb hands when waking up
* Plantar fasciitis (??)
*Weakness in hands and arms
*Sensory issues (small spots of burning, feeling like plastic wrap is covering parts of my body, pin pricks, tingling, vibrating, etc )
*Urinary leaking


To date the tests I have had and their corresponding results are:

Various blood tests (all normal, except the elevated lymphocytes and liver enzymes)
CT scan of brain and c-spine (normal)
Barium Swallow (showed possible esophageal web)
Gastroscope (completely normal, despite results from the barium swallow)
MRI of brain and c-spine (clear, I’m told)
Psychological Evaluation (basically ok, although I may be suffering from mild depression or mild anxiety, medication not required)


My regular PCP is setting me up (at my request) with an LP, and also another neurologist. I am fortunate, the province I live in allows me to request a particular specialist, and the Neurologist I requested to see is a regular neurologist who also specializes in MS, and works in the MS Clinic closest to me. I've heard from a few people that she is outstanding, so now it's just about waiting for the appointments.

Anyway, I've written a book here. Wanted to introduce myself, tell you all my story, and see if anyone had any thoughts or ideas to give!

Thanks
Christine

[Nerve_Wrecked]

Hi Rena,

Thank you so much, and howdy neighbour!!

I don't have a copy of my MRI on CD, but am hoping to get one. The fee is relatively hefty for a low-income family of 4 ($55!!) , but I'd just like to have it. The neurologist I saw never looked at the films, just read the report! Arg, his physical exam was about 5 minutes tops, never testing gait (which I don't have any issues with, but still), and just testing the major reflexes (knees, elbows, ankles and fingers). The second PCP I went to see did a more thorough neuro exam and determined that I had absent abdominal reflexes, some reflexes were hyper or hypo (can't remember which), and either I had no foot reflexes or they were positive for babinski's (he just said the foot reflexes were indicative of MS, so...).

I am also extremely blessed to have an amazing husband. He, as a child of about 11, had a massive neurological attack, leaving him paralyzed on 1 side, and with 2 lesions on the brain stem. He did a lot of rehab, is walking, can use his hand, etc, but he absolutely has deficits on the right side from this attack. So, he completely understands and has been unbelievably supportive, far more so than my family. Only problem is, I can't bounce "is this a normal feeling???" off him! LOL

I'm certainly not here looking for a diagnosis, I'll leave that to the specialists (besides, my healthcare wouldn't cover a diagnosis from you guys ;) ), mostly I'd love to know what you all think. I worry that MS isn't the right dx (meaning I have NO clue what the right one IS) because of the lack of numbness, or O.N., or the other classics. Aside from the horrific fatigue, my life isn't drastically impacted by my symptoms, except that I have way worse symptoms if I overdo it. So I'd like to know if others like me have come back with an MS diagnosis.

My PCP is actually going to do the LP, but she's very open, and I can talk to her, so I will be asking her to run my spinal fluid for EVERYTHING!!!!! lol

One other thing, I forgot to mention, and that seems to be completely unconnected, although my gut tells me it IS connected is that I've had almost 2 years (at least) of chronically elevated lymphocytes ( where norm here is 1-4, I am usually between 5-6). My personal theory is that the elevation in lymphocytes is from my body being on the attack. I have a family history of auto-immune disorders (every female on my maternal side, for 3 generations,  has at least 1).

Oh who knows, it's all subjective I suppose, and hopefully this new neuro will have some ideas! I am excited for me too. Initially when I was referred to my original neuro, I was SUPPOSED to be referred to an MS Specialist, per my request, but when I lost the ability to swallow solid foods, my PCP tossed me in to see the first neuro she could (the next day), who turned out to be an Epilepsy Specialist!

Ok, I'm done rambling!

Thank you all for your kind words! I'm happy to be here!

Christine

[Rena705]

Hi Christine and welcome to the forum!  First of all we are glad that you joined us here and I certainly hope that you will find what you are looking for here.  However, if it is a diagnosis...unfortunately we are not able to give you that.  We are not doctors here but we will give you advice that will hopefully send to you in the right direction toward that elusive diagnosis.  We do have a retired physician who is also suffering from MS and she is an absolute charm to all of us.

First of all I see that you have had many tests and that you have seen a neurologist but that you also have an appointment with an MS specialist!  That is perfect and the next best thing you can do!  If you have the MS specialist that is going to do the most for you, he/she will first perform a full in-office examination.  This exam can tell your specialist about your mental status, cranial nerves, motor skills, coordination and gait, reflexes and senses.  This examination should take at least 1/2 hour and no less!  If there is no exam done on your first visit, ensure you question the specialist as to why he/she is not doing a neurological exam!!!

If you have a copy of your MRI on CD you should take it with you.  The reason for this is because an MS specialist can read an MRI a lot differently than neurologists or radiologists do.  If you don't have a copy, I am sure that the MS specialist will order another MRI be performed with or without contrast.

Is your LP going to be done by this new MS specialist you are going to be seeing?  Generally they are done by the specialist themselves and that way all of the testing is done within their realm and the results will be what the specialist needs.

I have to tell you honey that you are doing exactly what you need to be doing for your own sake!  The new MS specialist is a necessity for your own well being!  

You must know that we here at the forum are a great bunch of people...through thick and thin...we are there for each other and will be for you too!  If you need to ask questions, rant, rave, cry, laugh or just have someone to talk to ...we are here 24/7!  The road to a diagnosis can be so very frustrating and while sometimes family and friends have no way of understanding what you are going through...that is where we come in!  Please keep in touch with us and let us know what happens with the new specialist.  I am very excited for you because I believe that you are on the right path!

Lots of Hugs,

Rena705

p.s.  I am a neighbor of yours, just to the east of SK...howdy neighbor!

[princess73]

From what I have read over the last 4 months, your symptoms do sound like ms. My neuro told me that with a clear spinal, it wouldn't be ms. However, our great friends on this forum had told me they disagree. I too am in limboland and have most of the same symptoms as you, only I have pain/weakness on both sides (usually ms affects one side more than another according to my neuro). I have been diagnosed with fibromyalgia, even though I have lesions on the brain and many abnormal tests. Give our experienced friends here a little time and they will welcome you. Welcome and let us know how things go at your new appts.

[SOONERMOM]

Welcome to the forum!  There are soooo many of us here that are also in limbo, so you have found the perfect place.  I am sure everyone  here can relate to your symptom list, I know I can, and also about the long road to diagnosis.  This is such a great place to ask questions and get some needed comfort from time to time.

Stacey