New here
 

Hi, my name is Jess and I’m new here. *I think that I may have MS. *I apologize ahead of time if this post is long!

My symptoms started about 2 years ago. *It was 4th of July weekend 2013 and we were hanging out by the pool with the inlaws when I started having spasms in my legs. *Later that day I felt so weak and fatigued that I stayed behind while everyone else went to dinner and to see the fireworks. *I just slept for hours and barely made it up the stairs. *I remember having a feeling of vertigo when I lied down.

I saw my GP, a few neurologists, and my rheumatologist (fibromyalgia) over the course of the next year, and they ran lots of bloodwork and MRIs of my brain, C spine and T spine, but no one could tell me what’s wrong.

The weakness and spasms continued in my legs and then in my arms, along with tingling and some numbness too. *It was a bit better in the fall & winter of 2013, but got worse again in the spring of 2014. *At the time we were living in a townhouse and stairs were so hard that we had a new construction house with the master & laundry on the first floor built. *I started to feel better around October 2014 and we moved into the new house in November.

I had a pretty decent several months until 3 weeks ago. *The weakness and spasms along with some tingling is back, and even worse. *It started back up again suddenly one day. *I am having trouble walking, shuffling along pretty slowly. *I feel unsure of my balance because of the weakness in my legs. *I am also having some trouble with my grip and dropping things.

Previously I felt like the weakness and spasms were even on both sides, but with this latest flare-up the left side is definitely worse than the right. *At this point my bloodwok and MRIs are 1-2 years old. *I saw my GP today and she ordered more bloodwork, and I see neuro #4 on June 10th.

I just have this sinking feeling that MS fits my symptoms and that’s terrifying!

Sorry for the weird * in my post. Not sure what happened!

Hi compchick,

Welcome to NeuroTalk!

Don't worry about the * .

They sometimes appear on posts. I think it's something to do with phones... not totally sure, but I've seen it before many times.

take care.

Welcome Compchick, nice to meet you. So sorry as to why you're here,
but glad you found us. It's late, so I won't go into a lot of detailed writing,
just wanted to welcome you and say good luck with your new tests.

:grouphug:

Welcome to the boards, I sincerely hope you get a dx soon. Many of the sx are seen in MS, but there are numerous other disorders they could be associated with as well, some worse than MS some better.

I'll not say that MS isn't a terrifying prospect, however things have greatly changed in the community from ten and more years ago. There are far more disease modifying drugs and therapies out there to try and slow and stop progression, and more medications and therapies to help with the symptoms you have. Sure we might never go back to 'normal' though there a few who end up better than normal.

Do your best to stay positive, and be proactive. Stay as active as you can while waiting for your dx, if you smoke, quit, and eat a well-balanced diet. Keep track of your sx, along with anything that seems to be a trigger, but don't confine yourself simply to "this is an MS sx, or trigger", simply put down how you feel and what you experienced before hand.

Also, prepare yourself for a potential long haul if MS is what you suffer from, most of us get the dx simply because we're the square peg that doesn't fit the round hole of any other disorder. Though yes there is still the McDonald criteria, O-band presence in LP and lesions on spinal or brain MRI's that may speed up the dx, but many times doctors still are reluctant to pass down the dx until they have ruled out any other possibility.

Be patient, but firm with your doctors and never fear asking for a second opinion. It's also a good idea to keep track of your medical records, don't let doctors write you off because "these blood test" show you're fine when there's a significant discrepancy in tests you've had prior. Even if you're not sure if they're significant differences, if you have a question, ask the doctor outright. If uncomfortable in doing so, see if you can't find a friend or family member who can act as your advocate.

Just know you aren't alone, and we here on the boards will always be around to lend an ear, offer some advice or to simply share a laugh :hug:

Thanks for all of responses! I am trying not to make assumptions but at the same time trying to be prepared. I am lucky to have a very supportive husband and family.

I have been keeping all of my test results, MRI discs, etc. for years because you never know when you will need a second opinion. I also like to keep informed and be my own advocate. My GP is great and agrees that there is something wrong, whatever it may be.

I use the WebMD Pain Coach app to track symptoms. It isn't obvious but it has a PDF export, but I wish that report was more detailed.

Thankfully I'm having a not-so-bad day so far today!

Welcome Jess!

It's great that you have your records as that will make it easier for you and your doctors. I'm glad you have a supportive doctor who listens and believes you. That is so important.

I hope the appointment with neuro #4 goes well for you and you get the answers you need. Have you been following up with a rheumatologist as well? That is important too as you may have some sort of rheumatic disease that's causing some of your issues.

Hang in there and let us know how your appointment goes.:hug:

Yep, I saw my rheumy again this week and she also suspects something neurological, but ran bloodwork including Lyme and several autoimmune tests as well as thyroid just in case. I hope I get some answers soon!

welcome jess to NT

you've come to the right place for info/support.
and cudos to you for keeping medical records. i learned the hard way that it's very important.

sometimes getting a dx (MS or otherwise) is a relief because then you know what you're dealing with and can make a treatment plan.

it sounds like you have good drs and you're a strong advocate for yourself.
keep up posted.

Welcome! Along with the MRIs there should be a MRI report? They indicate nothing abnormal?

Welcome to NT...sounds as if your docs are on top of things test-wise. Good to see that they checked for Lyme, since it can mimic MS symptoms.

Also glad to see you're keeping track of your tests. Make sure to keep a symptom journal too with dates of onset. Also a list of ? for your neuro appt.

Most of all, try your best to live life in spite of the challenges. It's so frustrating when you don't know WHY these symptoms are occurring; but try to make lemonade out of the lemons you've been given.

I hope you get an answer soon so you know what you're dealing with!! I was so relieved to finally get an answer...and then reality set in:(

Keep us updated please...this is a great place with great advice and support...:hug:

Not having an answer has been hard - I want to know what it is so I can start treatment. The MRI reports are normal but are between 1 and 2 years old now. Hopefully the new neuro will run new MRIs. Thanks for the support!

Jess, since you don't know for sure and if it were me and what I know now and I've followed by sister's path with MS for a lot of years.... I would surely follow Ann's nutritional plans and be sure your Vit D is optimal ...her book is Healing MS and I have a thread about this. Eliminating and reducing sugars/carbs for anyone makes sense...

I'm still awaiting the results of my bloodwork. Hopefully tomorrow before the weekend. My left arm has been bothering me more lately (weakness, pain) and has started to feel like it "wants" to be bent a little, like it's more comfortable. I just noticed tonight that if I let my arm hang down, it doesn't straighten all the way like my right one does. Similar with my left hand, it takes a bit of effort to straighten it out. Weird!

My hubby is awesome and went to the store, but I haven't yet taught him what is too heavy since this flare-up is worse than before. So he came back with a 2.5 lb thing of peanut butter. I tried to lift it with one hand and got it about 1" of the counter. So I will be scooping it into the smaller jar lol.

My bloodwork came back. It looks like a few tests were cancelled by the lab for some reason, and I know my GP added folate but that isn't listed, and I would think she also added vit D and B12 (tested normal previously) but those aren't listed either. Strange!

I have my appointment with the neuro on Wednesday. I'm going to call my GP about some of these results. I have had similar thyroid results before but she doesn't think there's an issue with my thyroid itself.

RA Latex Turbid 4.6 IU/mL [0 - 13.9]
Sjogren's Anti-SS-A <0.2 AI [0 - 0.9]
Sjorgen's Anti-SS-B <0.2 AI [0 - 0.9]
WBC 6.3 x10E3/uL [3.4 - 10.8]
RBC 4.71 x10E6/uL [3.77 - 5.28]
Homoglobin 13.8 g/dL [11.1 - 15.9]
Hematocrit 42.3% [13 - 46.6]
MCV 90 fL [79 - 97]
MCH 29.3 pg [26.6 - 33]
MCHC 32.6 g/dL [31.5 - 35.7]
RDW 13.1% [12.3 - 15.4]
Platelets 302 x10E3/uL [150 - 379]
Neutrophils 62%
Lymphs 25%
Monocytes 5%
Eos 8%
Basos 0%
Neutrophils (Absolute) 3.9 x10E3/uL [1.4 - 7]
Lymphs (Absolute) 1.6 x10E3/uL [0.7 - 3.1]
Monocytes (Absolute) 0.3 x10E3/uL [0.1 - 0.9]
*Eos (Absolute) 0.5 x10E3/uL [0 - 0.4]
Baso (Absolute) 0.0 x10E3/uL [0 - 0.2]
Immature Granulocytes 0%
Immature Grans (Abs) 0.0 x10E3/uL [0 - 0.1]
Lyme Western Blot IgG Negative
Lyme Western Blot IgM Negative
Free T4 1.41 ng/dL [0.82 - 1.77]
TSH 2.660 uIU/mL [0.450 - 4.500]
CCP Antibodies IgG/IgA <1 [<20]
*T3 Uptake 21% [24 - 39]
*Thyroid Perioxidase (TPO) Ab 48 IU/mL [0 - 34]
Sed Rate 23 mm/hr [0 - 32]
Creatine Kinase, Total, Serum 44 U/L [24 - 173]
Magnesium, Serum 2.1 mg/dL [1.5 - 2.6]
Complement C4, Serum 31 mg/dL [9 - 36]
Complement C3, Serum 154 mg/dL [90 - 180]
Aldolase - Unable to obtain valid result
*C-Reactive Protein, Quant 10.1 mg/L [0 - 4.9]
Glucose, Serum 82 mg/dL [65 - 99]
BUN 11 mg/dL [6 - 20]
Creatinine, Serum 0.77 mg/dL [0.57 - 1.00]
eGFR If NonAfrican Am 105 mL/min/1.73 [>59]
eGFR If African Am 121 mL/min/1.73 [>59]
BUN/Creatinine Ratio 14 [8 - 20]
Sodium, Serum 139 mmol/L [134 - 144]
Potassium, Serum 4.1 mmol/L [3.5 - 5.2]
Chloride, Serum 100 mmol/L [97 - 108]
Carbon Dioxide, Total 22 mmol/L [18 - 29]
Calcium, Serum 9.9 mg/dL [8.7 - 10.2]
Protein, Total, Serum 7.2 g/dL [6.0 - 8.5]
Albumin, Serum 4.6 g/dL [3.5 - 5.5]
Globulin, Serum 2.6 g/dL [1.5 - 4.5]
A/G Ratio 1.8 [1.1 - 2.5]
Bilirubin, Total 0.8 mg/dL [0 - 1.2]
Alkaline Phosphatase, S 49 IU/L [39 - 117]
AST (SGOT) 18 IU/L [0 - 40]
ALT (SGPT) 24 IU/L [0 - 32]

Urinalysis
Specific Gravity 1.009 [1.005 - 1.030]
pH 7.0 [5.0 - 7.5]
Color - Yellow
Appearance - Clear
WBC Esterase - Negative
Protein - Negative
Glucose - Negative
Ketones - Negative
Occult Blood - Negative
Bilirubin - Negative
Urobilinogen,Semi-Qn 0.2 EU/dL [0 - 1.9]
Nitrite, Urine - Negative
WBC 0 - 5 [0 - 5]
RBC None [0 - 2]
Epithelial Cells 0 - 10 [0 - 10]
Mucus Threads - Present
Bacteria - Few

What do you think about all your labs? They look pretty good to me, CRP is high but that can come down with constant Omega 3's which I use and brought my CRP to 1.3 or so. I had elevated Fibrinogen and it's coming down too with Natto and Vit C and 3's and other oils. I don't see that test, but it's special ordered with Lipid panel. Have you had D levels done in past?

It's best for your doc to explain the test results. The thyroid numbers are interesting...

Omega 3 isn't a bad idea. I am waiting on a call back from my rheumatologist to discuss the results. The CRP and thyroid results are similar to when this all started 2 years ago. She didn't think that those explained my symptoms and doesn't think that it's RA or Lupus. My vitamin D and B12 were tested at that time and since then and were normal. The neuro will probably order more tests on Wednesday.

Just remember when docs say "normal" or labs are in range of normal, one can be high or low or mid normal. A doc many years ago, back in 1991 and for 10 yrs said my thyroid labs were normal, and I was sluggish all those years...my story is long, but now I look at the ranges and see where the "normal" is... And as I've thought for many years, we are not numbers but have symptoms and the numbers are good gauges BUT....

The test result that would be of concern to me is your CRP level. I agree with Debbie D that you should have your doctor explain it to you. The Mayo Clinic categorizes your result of 10.1 as in a high risk category:

http://www.mayoclinic.org/tests-proc...s/prc-20014480

An excerpt:

“A test result showing a CRP level greater than 10 mg/L is a sign of serious infection, trauma or chronic disease, which likely will require further testing to determine the cause.”

Thanks! I agree that my vitamin levels should be retested anyway. So far there isn't a more specific reason for the high CRP.

Unfortunately today's appointment with the neuro was frustrating and not helpful. Basically he thinks it's all in my head and didn't order any tests. Ugh. When he did the strength tests he only used one finger. He thinks that since I can walk at all that it's not neurological. I have an appointment with a different neuro but it's not until 8/4. I hope it's worth the wait and I can get some answers.

Just a thought, have you ever considered going out of the conventional medicine box doctor thinking. I left that world probably in late '99 or so. I started with integrative MD's and can't imagine going back. The IM doc I see now is a woman and I'm with her about 8 yrs or so. acam.org (I think that's the link) for integrative docs in the U.S. I'm sure it's not a total listing.

Hello Jess, I was really hoping your doctor’s visit would go well for you. I don’t know what’s the matter with neurologists. So many of them are arrogant and think they’re god’s gift to the human race. If they can’t make an accurate diagnosis, then of course the cause must be psychological! Did he even mention your high CRP level? That’s certainly not all in your head.

If you don’t mind a few suggestions, I think it is quite important for you to have your MRIs and blood tests for B12 and D redone as soon as possible. I don’t think you need to wait until 8/4 to have these done. Since you have already had the imaging and tests done before, your GP should be able to order these for you right away. My PCP was able to order these very quickly for me after I encountered problems with my neurologist.

Your B12 levels are quite important, because a B12 deficiency can cause demyelination and many of the neurological symptoms that are typical of MS. If you are deficient, you want to start supplementation as soon as possible. If you wait too long, some of the associated neurological problems can become permanent. To be safe you may also want to supplement with B12 (methylcobalamin) even if your test results are on the low side of normal. There is a sticky B12 thread on the PN forum which has many pages of helpful information.

Thanks, I hadn't heard of integrative medicine.

Yeah I don't know what his problem is. He didn't like that I didn't fit in his neat little neurology box. He didn't mention my high CRP level but did mention my TPO but no one has ever pursued that. When I can barely walk, it's not in my head!

I think I forgot to mention here that I also have inappropriate sinus tachycardia (which I told him). They were never able to find a cause (so I take meds for it) and I wonder if there is a neurological connection there.

Whoops, I only got part of my thought out. I'm going to go back to my rheumatologist in the meantime and have her run more tests.