In and Out of Limbo

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

In and Out of Limbo

Postby G0bl1n » Fri Jun 02, 2017 7:10 am

Hello all. Like many here I am currently having symptoms but no diagnosis. However, after looking at some of the other posts in this thread, my path seems a bit different.
I first started having symptoms only 9 months ago. It started as a tingling feeling in both feet & ankles. I let this go for about 3 weeks before I went to a walk in clinic, figuring I either had slipped disk in my back ( causing a pinched nerve) or something simple. It was from this one visit that I was referred to a neurologist. The Dr. who saw me at the clinic didn't like that it was both feet at the same time, and though it would be neurological.

I saw the first neurologist shortly after. At this time, about 2 months in, my symptoms had increased to a dull pain in both feet up to my knees, with tingling & numbness in my feet and ankles. The neurologist ordered bloodwork and an MRI to see what was going on. While waiting for the results I had my first fall while walking my dog. I feel backwards on my left side, but given that the weather was colder, and ice was already on the ground, i blamed it on that. Following up with the neurologist, she caught me off guard by mentioning the possibility of MS. The mri had shown a lesion on my brain stem ( my Pons) and abnormal whitematter layering ( still not sure what that means) in spots. This neurologist set me up for another MRI, and a LP.

Between this appointment and the LP the pain in my legs had increased and I feel about 3 more times, all to my left. One was in my living room on carpeted floor, so I couldn't blame it on ice anymore. I had the LP in January of this year, and it came back clear, no O-bands or anything out of the ordinary. Blood work also came back clean for Lyme, ANA, Syphilis, and Sjogren's Syndrome. The neurologist decided to test my Vitamin B and D. B6 came back a little high, so I was advised to stop taking my multivitamin ( the only thing I regularly took at the time, clean bill of health prior to this). This neurologist also felt stumped, and got a second opinion on my MRI's with a college, who did not believe the spot on my Pons was infact a lesion, and believe I was having issues with Small Fiber Neuropathy. So i was referred to a specialist for neuropathy.

As a few more weeks go by between my last visit with this neurologist and the new one, my symptoms increase again. The pain in my legs is now a 5-6 out of 10 and i am physically limping when walking. Im also starting to suffer mild 'cognitive fogs" ( forgetfulness, pauses in my speech, problems focusing) and dealing with major body fatigue. The new neurologist retests my vitamin B6 and the results are normal. She does not believe that is the issue. However, this neurologist does not have any of my referral or previous notes/results from the other neurologist, so this first visit is me re-expalining everything. However, in looking me over, she concludes I have sever weakness in my left leg, and my left arm ( which up to now had been feeling fine). 2 weeks later I see her again ( now on Gabapenten, 300mg for the pain) and thankfully she has all my medical notes so far. She reviews and once more states she believes this is an early sign of MS. Per her reading of my MRI and the radiologists notes, there are multiple lesions on my brainstem and tells me 'you do not have a healthy brain for a 32 year old man".

She suggests a folding cane for help with stairs and refers me again ( her specialty is small fiber nerves, not CNS) to the MS center of NY ( my home state) and an MS neuro-specialist.up before hand. He needs to review your case before he will accept and make an appointment. While waiting for this appointment, I start having issues with my left hand. I had developed a numb/painful feeling from the elbow down to my fingers (best way I can describe it is hitting your funny bone) on the outside of my hand and am using the folding cane all the time. I also start dropping things in that hand.
He sees me on a friday, and does the usual gate test, checks my vision, and the strength in my limbs. Then, he surprises me and my wife ( who came with me) by saying he strongly beleives I have NMO ( though he called it Devics Disease as well), despite my eyes having no pain or vision issues throughout all this ( no headaches either). He states he beleives it's the first attack of NMO, though there is still a chance it is early MS, and wants to get me going on IV steroid infusions that day. So over the course of 5 days (mon-tues) i have an infusion of 1000mg of steroids a day ( IV of 100mg on friday, 900mg of prednisone on sat & sun, and two more IV infusions mon & tues). He also orders more blood work to check for NMO-antibodies, an MRI on monday with & without contrast, and a visit with a Neuro-opthamologist.

Safe to say, with all that in my blood stream I felt great and many of my symptoms disappeared. I was walking without the cane, though stiffly and not too quickly, did not have any cognitive fog, and my lest arm felt normal ( though leg and arm were still weak, the pain was gone). THe MRI's came back looking good, no new lesions anywhere's and it even looked like the lesion on my pons was doing a bit better ( not fully sure what this means either). The eye exam goes through with no signs of issues with my optic nerves, and blood work comes back fine.

So he takes NMO off the table and..... now we wait. Currently, i am using a cane per his suggestions for now, though moving much better than I had been. Cognitive functions are still good, though pain and tingling is coming back in my legs and left arm. I don;t really have a diagnosis at the moment, just orders to go on a glutten & dairy free diet for the next 3-months, follow up with him in August, and call them the moment any new symptoms pop up, or my symptoms come back big time ( The pain and weakness are to be expected, I guess, given the nature of my lesion). I did call the other day to report that my arm, which had been fine, is starting to act up again, and my legs are still sore. I'm waiting a call back as he decides if he wants me to try PT, a new med ( currently just on Vitamin D and Gabapentin) or come in for another eval.

I know it isn't as long a time as others have had to put up with symptoms without a diagnosis, but it's been very frustrating to have deteriorated that fast, have the hopes of a diagnosis in sight, and then be left playing the waiting game.
G0bl1n
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Re: In and Out of Limbo

Postby NHE » Fri Jun 02, 2017 10:38 pm

G0bl1n wrote:I know it isn't as long a time as others have had to put up with symptoms without a diagnosis, but it's been very frustrating to have deteriorated that fast, have the hopes of a diagnosis in sight, and then be left playing the waiting game.


Welcome to ThisIsMS. It's better to wait and be certain than to be misdiagnosed and have the real cause go untreated or take an unneeded and ridiculously expensive medication with potentially lethal side effects.
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Re: In and Out of Limbo

Postby Snoopy » Sat Jun 03, 2017 5:32 am

Hi G0bl1n,

THe MRI's came back looking good, no new lesions anywhere's

Just to clarify; you had MRIs of the spine? Cervical, Thoracic, Lumbar? All were normal?
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Re: In and Out of Limbo

Postby G0bl1n » Sun Jun 04, 2017 4:02 am

Snoopy wrote:Hi G0bl1n,

THe MRI's came back looking good, no new lesions anywhere's

Just to clarify; you had MRIs of the spine? Cervical, Thoracic, Lumbar? All were normal?


Yes I did. Spine is fine. no lesions spotted on it. So far the only Lesion is the one on my pons.

So far, Almost 2 weeks since the IV infusions, I'm still much better than I had been, though still have some pain in my legs & arm and a bit of weakness on my left side.

One of the tings I've noticed the past couple weeks is that I've become more susceptible to heat. We have Central air in our home, and usually keep it at 72. Lately though, 72 feels like a heatwave, and I keep turning it down to the upper 60's just to be comfortable.
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Re: In and Out of Limbo

Postby coles821 » Thu Aug 17, 2017 10:56 am

Hi there,

I was just reading your post and noticed you went to an MS center in NY recently. I did as well and was wondering if it was the same one. Is there any way you could tell me which doctor you saw and what you thought of him?
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Re: In and Out of Limbo

Postby G0bl1n » Mon Sep 04, 2017 4:42 pm

Hi Cole's,

This was in Latham NY with Dr. Edwards. I have another visit this Wednesday for an assessment
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Re: In and Out of Limbo

Postby G0bl1n » Tue Sep 05, 2017 7:46 am

Just an update for anyone interested:

I'm going to see the neurologist again, tomorrow but since my previous post ( a few weeks after I've infusions) my symptoms are back and gained some new tricks

*I've experienced the MS hug
*Random mood swing (very angry feeling)
*My right arm now is starting to show the same sore/numbness as the left
*Very slight double vision twice
*1 instance of difficulty swallowing.
*Almost forgot, an electrical-like jolt down both arms and my right leg (not at the same time)

Looking forward to what the Dr. Says tomorrow. I'll keep things updated here for those interested.
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Re: In and Out of Limbo

Postby G0bl1n » Thu Sep 07, 2017 9:38 am

Ok, so I was able to see the doctor yesterday, and am officially out of Limbo. They have diagnosed me with Progressive MS.
A recent MRI showed a new lesion on my Pons coupled with the symptoms in my previous post lead the doctor to comfortably make the diagnosis.

So I am moving out of limbo, after being in it for just shy of a year. I know there are others here who have been in diagnostic limbo much longer than that. Sty strong. Limbo isn't permanent.
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Re: In and Out of Limbo

Postby Kadancehoop » Sat Oct 07, 2017 11:04 am

Your symptoms do situations sounds a lot like mine care to comment on my symptoms? I feel like I know I have ma and I keep deteriorating so fast, been waiting so long to see a neuro optomologist! I am 25 years old and have been experiencing a lot of symptoms since the birth of my first child. It all started with vibration in my feet, it felt like a phone was going off under me and it was constant. Then the insect sting feelings began along with what I would call extreme twitching of my extremities. My vision started to blur every once in a while but I thought nothing of it. Then I got sick with sinusitis and it lasted 8 months! During the last 3 months of the sinunitis I lost all hearing in my ears. I went to a ear nose as throat specialist and they determined it was nerve damage and they wanted to did a balloon synoplasty, which I declined. Over time I eventually got most of my hearing back. A few months past when my symptoms seemed to subside. Then I started to experience really bad cramping on my legs and feet (especially my feet).the numbness and vibration travels up my calves but I could still walk. I had also been experiencing loss of balance, running into walls constantly. Then the double vision came along and I went to the eye doctor 3 months after that started and they said it could be due to using electronics to read, so I got glasses and thought okay one thing has been fixed.... oh o forgot to mention around the time the sinusitis began I had numerous bacterial infections and kidney infection UTIS, I eventually got to where I was barely peeing and in a lot of pain! I would take AZO pills on a regular basis. A few more months go by and then I get a bout of pneumonia using about 50% of my lungs. So I’d go to the doctor and every other month it would be back again even worse. After 4 pneumonia’s, I was outside one morning after church and I notice a gray fuzzy blob in my right eye I tried to was my face to get it out with no such luck. So I give it a few days... we’ll 2 weeks and it was just getting worse and worse so I call the eye doctor and they have me come in right away. They ran every test available Bd found that I had optic neuritis. The doctor told me to go straight to the hospital but I couldn’t for 3 days (family issues arises) so I go the following Monday I get in to see a neurologist. And he runs every test spinal tap negative, mri of brain only negative except for the lesionbon the optic nerve. He asks if I have other symptoms and I didn’t think that my issues were related so I said no , ( by this time I was so slow to speak an had no memory AT ALL) so he schedules me to see an optic neurologist which I’ve been waiting to see for 5 months ( I go next month on Nov. 22) since then I’ve had 5 more bouta of pneumonia all acccompanied by a uti. Throughout this ordeal I’ve had huge memory loss and feel so dumbed down! I am in pain everyday and it’s just escalating. They are so many more weird symptoms like feeling of water dripping on me, patches of numbness and pins and needles. I have the electric feeling when I wake up or turn my head down or to the side. I am having difficulty swallowing and I feel so awkward when I walk. Oh and I also have fibromyalgia. I just don’t know what to do, I know something is severally off with me I’ve never been a sick person! Please I need someone to talk to and to tell me what you think. I feel crazy but you know when something is wrong with your own body!
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